Prince Liam the Brave

Liam I miss you...

2011-05-11T23:08:00.002-04:00

A stream of consciousness or near unconsciousness as it got later...written 5/11/11 posted 5/13/11 due to blogspot being down.

My Dearest Liam,

My heart and mind are simply aching. I cannot get through a morning or an evening without longing for you until the pain is too great to bare. I cannot sleep because tomorrow will come sooner and it will start all over again..... yet another day without you. Tears roll down my cheeks so often that I am often surprised when they are not. I have discovered new ways to breathe and to distract myself when I am in a place where I feel as if tears should not be present. I have found that mornings are very hard for me. Even riding in a cab is trying because looking out of the window at the world around me immediately becomes time to reflect on what is not right in my world. Simply breathing takes determination because it no longer feels involuntary like it should. I try and imagine how for the rest of my life I will feel this bottomless void and unimaginable sorrow, and what it might do to me over time. I contemplate what Ella's life will be like without her brother and how your mom and I will come to terms with this loss we have been dealt. I have always believed I was a survivor; stronger emotionally, physically, and mentally than many. Much of this strength came from insulating and or distancing myself from my feelings. You though my sweet loving son broke through all of my defenses and I loved you like I never imagined possible. So much that it scared me and especially so when I realized that I might lose you to something I could not see or fend off. No matter how much I might have tried to protect myself ....your smile, touch, and the sweet hypnotic sound of "Daddy I love you" was far more powerful than anything I had at my disposal. My armor was stripped from me and now I cannot defend myself from the pain and misery that I am left with in your absence. I feel guilty for not being able to make you better. I vowed as all fathers do to protect my child at all costs and I was not able to. I tried so hard and fought with so much hope and it just was not enough. I am not one who accepts failure and will keep getting up, trying again and again; harder each time. But how I get up from this loss and continue to fight I do not know. What am I fighting for when I have already lost what is unimaginable and immeasurable? Do I continue to fight because I have nothing to lose? Do I stop fighting and just live my life quietly? Can I remain as close to pediatric cancer as I am now? Knowing doing so will invite sad memories back and often.

I was so worried my fear would show on my face as your battle went on because you could always tell if something was bothering someone. When I would look at you and you would stare into my eyes and just nod your head up and down without uttering a word...I wondered sometimes if you knew more than you let on. I wondered if you were telling me "I am ok Daddy...everything is ok" because you could sense my fear. Liam, I m sorry the world has not put enough of a priority on saving kids. I am sorry that bureaucracy and profit are what cover up so many issues and that not enough people choose to stand up for what is right. I am sorry your type of cancer had not had enough attention paid to it over the years, and still to this day cannot be treated effectively. I am sorry most humans cannot see what is right and wrong and when they do they often look the other way because it is easier. Most have lost their will to fight back. Liam, I am sorry your hopes and dreams were cut short and all you desired from this world was not to be had. I am sorry we all failed you. I am sorry we never got to use the woodworking bench and tools you got from Santa. I am sorry I had to go to work when you wanted me with you, and I am sorry that I could not wish a snowstorm, rainbow, beach or the sun whenever your heart desired.

I hope you were not scared to leave us and that you felt no pain. Not knowing is something that brings me the greatest heartache and is often when I find it hardest to breathe. I try and cling to the memory of you reaching past me and smiling like you knew where you were going....you were not afraid but I certainly am. I have so many questions I feel must be answered for me to find any ounce of peace and yet I know they never will be. I know I must compartmentalize all that we as a family have endured and find a way to move ahead; but anyone who knows me at all knows how hard it will be for me to do that. I worry that I am not going to be able to let go and to be able to package this up neatly and trick myself into some false sense of happiness. Most people manage to accept the many ills of our world and to tolerate the lies that surround nearly every topic, but we both know I am not one of those people. I feel it would be wrong not to let the reality of my loss drive my actions, feelings, and beliefs. The weight of this world without you is so heavy it often feels like I might not be able to bare it. It is more difficult than ever to deal with or relate to day to day issues when they all pale in comparison to the tragedy of losing a child to cancer. A couple months have gone by since you earned your wings and each day I miss you more. Nothing could have prepared me for the emptiness I feel inside. I try and find some comfort in knowing you are in a better place than I and free of the burden of your broken body. Your sister Ella is amazing and brings mommy and I sunshine each and every day. It's almost as if she knows she is now the glue that needs to hold us all together and you would be so proud of how much love she gives us and how brave, compassionate, and fun she has been. I am not sure how we would get through each day without her light. Watch over her and keep her safe. You are her angel and we tell her so. She misses you so very much and always will. I thank god for choosing us to bring you into this world, and though my heart now aches for having to give you back, I would not trade our time together for anything.

I want you to know I am proud of you Liam and it is amazing to see those you inspired doing so much to fight for other kids, and in your honor. You were the inspiration for something that is becoming quite remarkable. Know that mommy and I and many others who love you are working very very hard to make sure it lives on and grows into something that will stand the test of time. Your light and spirit will one day be responsible for saving the life of a kid just like you. I hope to know just who that kid is and when he grows up I will be sure to tell him your story. Your friends are baking so many cookies and having bake sale after bake sale, and all for you Liam. Your love and spirit are contagious and you have inspired not just me and mommy, but thousands of others. You have given many wonderful people a purpose and they surprise us each day with their noble and selfless acts.

Liam I am not sure what to do this Friday. It is the day I watched you come into this world 7 years ago and a day that has always been filled with such emotion. I know it is going to be a very hard day and not sure how to make sense of the mix of emotions that are already building. I am not sure yet if writing will help me or if it is simply salt in an open wound. I know I have a desire to capture and preserve the memories that I am so afraid of losing, and while they are fresh and vivid in my minds eye. I miss you my sunshine. Happy Birthday Liam. I love you and miss you to the moon and the stars and back again...

"You are my sun"

by Sun Kil Moon

You are my light

Dark cities, you fill the loss

Of the day

You are my love

Radiant and pretty, over seas

You find ways of bringing hope

The lonely hours, gloom of night

Empty mornings

You are a stem, of wild flowers

Rollin' hills, 'round the bay

You are a gap

In the meadow, soaring low

In this way, you are my friend

In the shadows, there to bring

When I need

You are the suites

Of the cellos

There to mend, if I bleed

You are a swing

Sleepy porches, the warm light

On my face

You are a charge, of wild horses

You are the sun

You are my SON

Sleeping over spilling out

Over the mountains

You are my sun

link to song on itunes

http://itunes.apple.com/us/album/you-are-my-sun/id374811685?i=374811730&ls=1

Thank you to all who are doing so much to honor Liam this month and helping to bring awareness to the cause in hopes of inspiring others to join in the fight against pediatric cancer.

Your love and support carry us forward and together we can and will make a difference.

Larry

NY Daily News Feb 15th 2011

2011-02-20T11:24:00.002-05:00

http://www.nydailynews.com/ny_local/2011/02/15/2011-02-15_bravest_hearts_cry_for_lil_liam.html

Celebrating Prince Liam the Brave

2011-02-16T20:43:00.006-05:00

Dear Friends,
On Monday, January 24th, the world lost Liam Witt - a gentle, inquisitive child who loved life and lived it to its fullest. . .a brave, sweet little boy who endured so much without complaint and inspired his parents each day with his courage and love. The son of Cookies for Kids' Cancer founders Gretchen and Larry Witt, Liam will forever be the inspiration for their mission to fund new, less toxic treatments for pediatric cancer.

On Valentine's Day at St. Francis of Assisi Catholic Church in New York City, I joined hundreds of friends and family to celebrate the life of Liam. Each day since Liam's memorial service, nearly 50 families in this country received the very same news the Witts received four years ago: Your child has cancer - the disease that kills more children in this country than any other. And tomorrow, about 50 more will get that same news, and in an instant those families will learn what is impossible to accept - cancer can impact any child. It happens every day.

So, how can we help these families? How can we improve their odds? How can we save more kids?

Surrounded by those who knew Liam best, the answer seemed quite clear to me.

Together, we can honor Liam best by continuing the fight against pediatric cancer.

You don't have to know lion-hearted Gretchen and Larry Witt to be inspired by their example. After learning that Liam had a 30 percent chance of survival, they focused every spare secon they had on increasing support for and funding of new, less toxic therapies in an unbelievable effort to save Liam's life and the lives of so many other innocent children.

At the memorial service, I made a resolution in Liam's name. I vowed to honor this amazing child and his valiant family by taking specific action to advance pediatric cancer research. Today, I ask that you join me.

Liam would have celebrated his 7th birthday this May. It's my hope that 700 bake sales will be held across the country in May to honor my friend and hero. As further motivation and a symbol of its love for Liam, the Glad Products Company is committing $225,000 to match all money raised by Cookies for Kids' Cancer bake sales in the month of May. I can't think of a better way to show support not only to Liam's family but to all families in the fight against pediatric cancer. than to get involved.

I called my resolution the "Prince Liam Pledge." Today, I ask you to join me by vowing, in Liam's name, that the 50 kids who get this diagnosis today will have a better outcome than he did. Every child deserves it. And there is arguably no better way to honor the bravest person most of us have ever known.

With sincerest thanks,

Bob Woodruff
ABC News Anchor

Prince Liam’s Memorial Service

2011-02-07T10:10:00.005-05:00

Prince Liam’s Memorial Service

Monday, February 14th, 2011

Memorial Service:
2:30 pm - 4:00 pm
St. Francis of Assisi Catholic Church
135 West 31st Street
(between 6th & 7th Avenues)
Note: We suggest arriving at least 15 minutes early.

Reception:
Directly after the service
Studio 450
450 West 31st Street
(between 9th & 10th Avenues)
12th Floor
Note: It is approximately a 10 minute walk from the church.

Liam’s family is requesting that everyone wear something orange, their Prince’s favorite color. Additionally, Liam was particularly passionate about ties and felt every day was a good day to wear one.

Please note that anyone bringing cookies should arrange for delivery to Studio 450 before going to the church. Please do not bring any cookies to the church.

Good-night, Sweet Prince.

2011-01-27T00:46:00.005-05:00

Now cracks a noble heart. Good-night, sweet prince;
And flights of angels sing thee to thy rest.
--Hamlet,V,ii

It is with shattered hearts that we share the news of the end of Liam’s brave and epic journey. Our dearest Prince could simply fight no more as his enemy had grown in size and strength. He fought fearlessly and relentlessly for 4 years. On Monday January 24th at around 4:00 in the afternoon, Liam passed peacefully in our arms. I have sat here for nearly an hour trying to share with you the profound sense of loss we feel but I cannot find the right words. Liam was the drum by which our family’s heart beat and today the drum is painfully silent. Our heart is broken and with it the ability to rationalize the rush of feelings that surround us.

Scan results from just a week ago were not as hoped but we never expected that just 6 days later would be the end of our physical time together. Liam touched people’s lives in such profound ways that we know he will live on in the hearts of many. A wonderful Memorial service and Celebration of Liam is being planned for Monday, February 14th at 2:30pm at St. Francis of Assisi Catholic Church, 135 W 31st Street, New York City. The most perfect day to pay tribute to the brave prince and to celebrate what Liam gave so freely…Love. If you are planning to attend Liam’s services, please RSVP to iloveprinceliam@gmail.com

In lieu of flowers, we request you honor Liam’s love and life by making a donation to the organization he inspired us to create, Cookies for Kids’ Cancer, through a special online giving page we have set up in his honor - http://cookiesforkidscancer.kintera.org/iloveprinceliam.

No news is NOT good news...

2011-01-12T12:31:00.002-05:00

Much has transpired since we last updated everyone who follows our journey. Many of you get your updates on Liam via Gretchen's Facebook page, which often provides real time information, but others I know still look to this blog as their source of all things Liam and why I am posting here today. The last few months have been the hardest part of this journey so far. Each time we take a step forward we lose any ground gained and then some just a few weeks later. Liam's cancer has been relentless and none of the therapies he has had over the last few months have held him for more than a few weeks. Since his surgery last summer we have been in the throws of this battle nearly full time. Liam has endured numerous rounds of toxic chemo, damaging radiation, and painful antibodies in just the past couple of months. Each has beaten his cancer back but only for a few weeks at which time scans show it spreading to a new spot or growing back where it was just removed or killed. Up until a few weeks ago we felt we were possibly making headway as scans showed some disease but nothing significant and the decision was made to use antibodies to help his body fight the remaining residual disease. Unfortunately after 2 rounds of antibodies a random x-ray showed a suspicious spot on his right lung. The CT scan that followed showed what appears to be disease in his right lung as well as on his right kidney... again.

This news came just 48 hours before Christmas. And with it the question of did we want to continue to fight. This was a question that required no time to discuss or to think through. The answer was we will fight..start therapy next week. Liam would never quit and we will not quit while there remains hope in our hearts and a smile on his face. His love, passion, joy, touch, insight, and warmth are worth every bit of hope and fight there is to muster and not just from us but all of you. So the holiday we hoped would be filled with joy and renewed hope instead left us searching for the strength to make it through and appear as if all was right in our world for Liam and Ella's sake. The needed break in the country was then cut short because we needed to be back in NY to start chemo just a day after the magical morning of Christmas.

Liam finished the round of high dose chemo nearly 2 weeks ago and has been neutrapenic (no immune system) for nearly 10 days now. The chemo pretty much wiped him out and he has barely eaten, played, or been remotely himself, until last night when he seemed to perk up a bit. As if the neutrapenia and fear of being admitted were not enough, last Thursday we found blood in Liam's urine and it has been persistent since. The cause is unknown and could be due to a virus in his bladder called BK virus, which is spread through transfusions and typically only effects those with compromised immune systems. Liam has had countless transfusions so we all hope that this is the cause since it can be treated with a full month of antibiotics. The test takes 6 days and we should know in just a few days if this is the cause. The other possible causes could be the chemo he received 2 weeks ago or the right kidney due to the tumor that is attached to it. If the tumor and kidney the hope is that it is due to the chemo causing the tumor damage. Liam had an MRI yesterday to get a better picture of his kidney and we hope to hear about the results today or tomorrow.

So as you can see we have been through a bit of hell the last few months and are doing all we can to keep pushing ahead and to keep Liam engaged and fighting. Spending nearly most of each day and week at the hospital has taken its toll on Liam, Gretchen, and our family as a whole. Liam needs your hope and prayers more than ever before. Gretchen and I continue to dig deep to find hope, strength, and courage. We will fight with everything we have as we have done from day one. Liam continues to accept whatever comes at him each and every day like the brave prince he is. His days are filled with very little fun and yet he takes it all in stride and does as he needs to with very little fuss. I hear more complaining from adults about the weather, their jobs, their co-workers, family members, and acquaintances in the course of a week than I have heard from Liam in 4 full years. His almost daily display of bravery, strength, and perseverance is really unbelievable when you think about the fact that he is just a 6 year old little boy. He continues to inspire us and to shape the way we view the world and the people around us.

I also want to take a second to thank those who support our efforts to help bring needed change to the world of pediatric cancer by supporting our Cookies for Kids' Cancer Foundation. A special thanks to The Glad Company for taking a public stand against pediatric cancer. No other national brand has created awareness for pediatric cancer in such a meaningful way. Thank you to the thousands of people who held and supported Cookies for Kids'Cancer Bake Sales last year. Cookies will announce grants of half a million dollars to 5 of the top pediatric cancer centers in the country in the coming weeks and it would not be possible without the efforts of so many. Lastly a special thank you to our dear friend Emily for all you do to keep Cookies growing.

Thank You.

Posted by LWitt

PLEASE VOTE FOR COOKIES

2010-09-18T15:49:00.005-04:00

Dear Friends,

You might not be aware that Cookies for Kids’ Cancer, the 501(c)3 nonprofit Gretchen and I started after Liam was diagnosed with Cancer, has been selected by the Jimmie Johnson Foundation (Nascar Driver - Lowe’s Team) as a winner in its Samsung Helmet of Hope program. The 13 chosen charities are now in a popularity contest to win and additional $20,000 grant. Plus the winning charity will receive a great deal of publicity and awareness courtesy of the most successful driver in Nascar! Help Cookies win like Jimmie Johnson wins!

VOTE NOW CLICK HERE
(bookmark link so you can return to it easily)

How can you help?
1. Vote for Cookies for Kids’ Cancer via the above link every day between now and September 29th. You can vote from every computer you can find and depending on your internet connection, from different browsers on the same computer!
2. Get everyone you know to vote as well…kids, friends, co-workers, etc.
3. Kids in college? Ask them to champion this effort on campus!
4. Have a Facebook Page? Share it! Like It!
5. Kids have a Facebook Page?…ask them to share it with all of their friends as well.
6. Company website?
7. Newsletter to customers?
8. Business meeting with a close customer or vendor? Ask them and their employees to get involved.
9. Kids in college? Get them to champion this effort on campus!
10. Help make someone aware of how easy it is to help bring awareness and dollars to pediatric cancer research…just the click of a mouse. Sadly September is Pediatric Cancer Awareness Month and I bet many of you had no idea.

Cookies has been in a heated battle for first place with another organization and why I have decided to go to my personal well and to reach out to all of you to help us pull ahead. After you vote the site will tell you what percent of the overall votes each charity in the running has earned. We need as much support as we can get to pull ahead and stay ahead. Voting once is nice but it will take a consistent daily vote from everyone to ensure Cookies comes out ahead. I know many of you are big supporters of our brave son Liam, our family, plus the organization we founded to fight back. This really is an easy way to help make a difference and it will take you just one to two minutes each day! Consider setting a reminder in your calendar or blackberry so you remember to vote each and every day!

VOTE NOW CLICK HERE!!

The winning charity will be announced live at the October 1st Nascar Cup Race at the Kansas Speedway! The exposure at the event and the media attention the winner will receive would provide Cookies with an immeasurable boost as we head into our biggest and busiest season. We appreciate any help you can bring to our effort. Cookies will grant more than half a million dollars before the end of the year to support research at the top pediatric cancer centers across the country. Please help us help Liam and other kids like him win. Vote for Cookies for Kids’ Cancer as the overall winner in the Jimmie Johnson Foundations Helmet of Hope Campaign.

And the clouds give back every time they cry..

2010-08-26T16:00:00.003-04:00

Last week was the worst week we have experienced in a very long time and quite possibly the worst since this journey began nearly four years ago. Liam has not been right since surgery 5 weeks ago to remove the small tumor in his chest. His recovery was too slow and he was not the Liam we knew the weeks prior to surgery when he was jumping in the pool, swimming, and enjoying summer like a kid is supposed to be able to do. The reason for his struggles became apparent last Friday when his recent scan results showed that his cancer was spreading. It has once again appeared around his right kidney and it could be that his kidney is now involved. The site in his chest that was just surgically cleared 5 weeks ago has new disease that looks as if nothing was even removed.

This is the most aggressive his disease has been and it has put Liam in a very dangerous place. He is weaker than he has been in a very long time and suffering from the effects of radiation and now the chemotherapy he is receiving this week in hopes of stopping the spread of this relentless, insidious, cancer. He is barely eating because he feels to sick to keep anything down, only making him weaker. We have never felt like we were losing this battle until now. Each relapse has been simply a bump in the road and together we have been able to meet it head on and get back on track to the amazement of many. This time is different. This relapse is much bigger and we have lost precious ground this time. We are scared for him in a way unlike any time in the past.

The conversation with Liam’s doctor was just as different. Each time in the past a game plan was presented and there was never a question of fighting on. Never a question of what do you as his parents want to do…it was obvious. This time we were both summoned to come in and discuss the situation even though everyone at MSKCC knows I have the scan result and game plan conversation alone and Gretchen is allowed to remain focused on Liam and the prize and is not to be brought into such discussions. This time the conversation started off with “this is serious” and then basically we were being asked if we wanted to wave the fucking white flag and surrender our son to this worthless enemy. No matter the words chosen by our doctor this was the question. Surrender to an enemy who’s too much of a coward to fight an adult like myself but rather it looks to steal our small innocent son.

Gretchen and I had already discussed this possibility and unless there was a case presented clearly stating we had no chance of stopping this disease we were going to keep going. We know Liam wants to live. He is one of the most alive people we have ever met and there is no question in our mind he would not want to give up if he had the ability to make such a decision on his own. It is a decision that a parent should never have to make because while we know fighting for his life is the right thing to do but it is tempered with the fact that we know the therapies we must use are taking their own toll on him and we also know it is very unlikely a cure. We all agreed to do a very strong regimen of 5 different chemo agents. It has to work. It must stop the progression we are seeing. We will then likely need to repeat the regimen and it will need to shrink the present disease to a point where it can be surgically removed again. We never stop hoping for a miracle and at the very least looking to buy him more time to experience the sun, moon, stars, sand, his best friend Tabor, and sweet adoring sister Ella. Liam needs your love, strength, support, acts of kindness, inspiration, and anything and everything you can spare for him now more than ever before. He is miserable and the coming weeks and months will only be more of the same for him and all of us involved. I cannot remember the last time I have seen him so beaten down. We need him to remain engaged and fighting. We all need more time to love and adore our Prince Liam. More time for Scientists to unlock the weak link in this cancer.

Last weekend Liam was supposed to travel to South Carolina to meet his friend Jack Johnson, a singer songwriter whose music Liam simply adores. He was going to be Jack’s guest backstage and to see Jack in concert. Unfortunately Friday’s news and the way Liam was feeling forced the trip and meeting to be cancelled. I so wanted him to be able to make this trip and for him to meet Jack whose music has put him to sleep and calmed his mind and heart so many times. I wanted him to leave an impression upon the man’s whose music touches his little soul, knowing Liam would surely touch his soul, as he has done to everyone who has had the pleasure of spending time with him. Instead Jack sang Liam’s favorite song to him and a friend of ours videotaped it and brought it to NY on Monday to share with Liam (thank you Emily we love you and thank you Jack!). The words to the song are below and the most amazing thing is the words are so fitting. It’s as if Jack knew Liam when he wrote this sweet song. It reflects Liam’s outlook on life, love of the sun, weather, the grass, and how his world really is a puzzle he enjoys taking apart and putting back together. Liam like the water gives us all a gift. If we could just give back to him like the clouds give back then the sun would come back out and he could follow it forever.

Talk of the Town by Jack Johnson
I want to be where the talk of the town
Is about last night when the sun went down
And the trees all dance
And the warm wind blows in that same old sound
And the water below gives a gift to the sky
And the clouds give back every time they cry
And make the grass grow green beneath my toes
And if the sun comes out
I'll paint a picture all about
The colors I've been dreaming of
The hours just don't seem enough
To put it all together
Maybe it's as strange as it seems
And the trouble I find is that the trouble finds me
It's a part of my mind it begins with a dream
And a feeling I get when I look and I see
That this world is a puzzle, I'll find all of the pieces
And put it all together, and then I'll rearrange it
I'll follow it forever
Always be as strange as it seems
Nobody ever told me not to try
And the water below gives a gift to the sky
And the clouds give back every time they cry
And make the grass grow green beneath my toes
And if the sun comes out
I'm going to paint a picture all about
The colors I've been dreaming of
The hours just don't seem enough
To put it all together

Friday at Lincoln Center

2010-08-15T17:37:00.004-04:00

Finally. An Update. Friday, August 13th.

2010-08-15T02:58:00.006-04:00

Friday the 13th of August marked three weeks since surgery. The surgery itself was fine...as far as surgery goes. Dr. LaQuaglia once again literally saved our son's life and has kept him in the game. What that man does as a matter of routine business on a daily basis goes beyond comprehension. It turned out that the lymph node had sprouted tentacles that were branching out from it and ouching his esophagus, pulmonary artery (or was it the vena cava?) and lung. I don't even want to think about what it was ready to do. It was one of Liam's shorter surgeries, but after a too-long wait for a surgery update that left us anxious and nervous and without the benefit of a waiting room filled with friends to keep us preoccupied like we have had for Liam's other surgeries, it felt like one of the longest.

The past three weeks have been very long weeks filled with lots of annoying "little" things that individually can all be explained but collectively make for tense times. The roller coaster we normally ride has been even more intense. We had issues while still in patient after surgery that had me trying to comfort a little boy who was beside himself with anxiety while simultaneously and vigorously explaining to nurses how we were going to deal with a blocked port...an episode that started at 3 a.m. and didn't resolve itself until well after 5 a.m. They were ready to give up after a lackluster attempt and put Liam through something very painful. I was determined that they were going to work at it like I have seen other nurses work at a blocked port until they resolve the issue. In the end, it unblocked without needing to make Liam endure more pain.

After surgery on Friday afternoon, he was up and shuffling along, completely naked except for shoes, at 10 a.m. on Saturday morning. He would painfully shuffle to a fish tank filled with lots of colorful fish, glance up, and beg to shuffle back to the room. While we were still in patient after surgery, our sweet prince endured having his back pounded on every two hours through the night for the first two nights after surgery, including directly over his brand new 6" incision, to loosen the build up of fluid in one of his lungs that was heading towards pneumonia. He would yelp and cry in pain during the procedure while giving me a bear hug...all while listening to "his friend" Jack Johnson sing to him for comfort. He never once complained.

For 13 days post-surgery, he coughed and coughed and coughed nonstop trying to open up his lung and was finally treated with an antibiotic specifically for bacterial pneumonia, even though he didn't have any fever which is the tell-tale sign of a bacterial infection. The coughing was so intense it would make him throw up, cause his stomach to be in a constant state of discomfort and to be exhausted from the effort. It was vicious cycle that finally started to resolve itself around day 17.

Since he was returned to us from surgery, it feels like every time he starts to feel better he's hit with something that sets him back. It doesn't help that his recovery has involved more treatment. In the past three weeks he has gone through two rounds of Rituxan (the first was six days post-surgery), a different antibody he hasn't received before, which is a relatively "easy" experience although one that people have died while receiving so it is monitored very closely and requires a very long day (11 hours) at the hospital. He has also had a round of Irino/Temo low dose chemo between the rounds of Rituxan. He has had no appetite, although in the past 72 hours we have seen it coming back. ("You want cookies for breakfast? Absolutely! Eat as many as you want, honey! Can I get you some ice cream?") (Yes, the insanity of the situation never loses itself on us.) He has lost the weight he worked so hard to put on the weeks before surgery, something that is frustrating to him and us. On top of the pneumonia-like symptoms, he was hit out of the blue with the most awful stomach virus symptoms exactly one week after surgery that had him completely down for the count but increased his white blood cell count from a normal range of 4 - 11 to 21.5. When we got the CBC results with that white blood cell count, everyone...and I mean everyone...on his medical team was a bit wigged out and decided to share that wigged out feeling with me in front of Liam which left my knees ready to buckle as I tried to nonchalantly take in the news while acting like they were telling me the score of baseball game I was vaguely interested in. "He has two key key tumor markers that are incredibly elevated!" I was even asked, more than once, if I was giving him GCSF shots to increase his white blood cell count. ("Oh, yeah, you caught me...I have been giving him the injections he despises almost as much as he despises Temodar capsules just for the fun of it!) Not surprising to us because we knew how sick he was from the rogue virus-like symptoms that plagued him, his white blood count has since gone back to normal. In the 21 days since surgery, he has gone through radiation set up...yet again but this time with Ella by his side...that included another tattoo to help line up the radiation beams in exactly the right spot. This time to help ease his high anxiety, I told him I'd get a tattoo first to show him how it didn't hurt. The technician administering the tattoos thought I was joking. I wasn't. I let Liam pick out the place on my body he wanted me to get the tattoo. He chose a spot on my right forearm to match a freckle on his right forearm. He received the first of 10 radiation treatment to the area where the lymph node was. During the treatment course, he's going to get some more radiation to his scapula to go after it again.

It has been a lot but we're not complaining.

Throughout it all, we have been living and loving and loving living. We have been to the movies (Cats & Dogs isn't so great but the kids loved it), we have stumbled upon an amazing free concert of music from around the world at Lincoln Center that Liam and Ella loved, we have been enjoying the peace and quiet of our home in New Jersey, and with Ella's help ("Come on buddy, you can do it") have been prodding Liam along to get back to the Liam we all very much want and need to see...the little boy with boundless energy and enthusiasm. He's getting there. Slowly.

Next Friday is August 20th. It's my birthday. It's the fourth week after Liam's fourth surgery and the fourth birthday I'm marking (noting, not celebrating) since this journey began. Next Friday, August 20th, Liam has a CT scan scheduled. I have two favors to ask. 1. Please pray/believe/hope/chant/meditate that the CT shows what we all want and need for it to show...nothing. 2. Please have a bake sale this fall to support pediatric cancer research. Our incredibly supportive supporters at Glad just announced a bake sale match period from September to December. We want to take full advantage of this match. We have to...Liam and his friends are counting on it.

It has been a hard few weeks but we have never lost our faith...and he has never lost the essence of who he is...a sweet little boy who wants to do nothing more than to be a little boy and big brother.

In the past few days, Liam has been planning a party he wants to have this fall. He's calling it a fun party for everyone to come and have fun. While receiving antibodies and chemo, he has slowly and diligently written out invitations, come up with a schedule for the party, and deliberated on every aspect of the party. We will keep planning the party because that's what we should all do...look at life as one big party to enjoy and celebrate.

Swimming on Wednesday - Surgery on Friday

2010-07-21T23:46:00.007-04:00

Be aware this post will start as an urgent update on Liam and end as a rant with a political and social bend...just the mood I am in and I make no apologies.

Last weeks scans show that the treatment over the last month has stopped the progression and both his shoulder and the spot in his chest show slight improvement. His team of doctors at Memorial Sloan-Kettering have decided that it is best to remove the soft tissue disease in his chest and we agree. The plan was to get him on the surgery schedule sometime next week but late today, around 5:30 pm, a slot became available this Friday. While we would love to pass on the earlier slot and let him enjoy another week of swimming and bonding with his little sister Ella, we want the cancerous mass out and we want it out now. The thought of it sitting inside him and knowing based on last Fridays scan that it is alive means it is likely growing. Think for a minute of someone you love and think about what it might feel like to sit there and not be able to stop what you know is trying to take them from you. Surgery while scary and risky is the one sure way of gaining ground on this relentless cancer. Chemo has it's limits and children can only get so much before it starts to do more damage than good. It is the number one reason we need new therapies to fight pediatric cancer and ones developed specifically for kids and their unique cancers and we need them desperately. Liam's type,neuroblastoma, is one of the most insidious and least understood of all pediatric cancers and yet it is the most common type of solid tumor and one of the most deadly. Today about 40% of kids diagnosed survive and kids who relapse have odds so low there is no reason to speak of them. I know many of you reading this know these facts or have heard Gretchen or I discuss them at various times in the past. This is simply a reminder so you know that nothing has changed! Each month we watch as more kids lose their battle as more are diagnosed and as those who seemed to have won fall victim to relapse and are plunged back into the abyss.

I know many have been truly bothered by the BP oil spill in the gulf of Mexico. We have all watched helplessly as an ecosystem was being destroyed before our very eyes. We all felt helpless and it gripped the nations attention for weeks and weeks on end. People wanted to stop it but felt helpless because they simply couldn't, they didn't have the power or ability to make a difference. BP is one of the villains in the saga of the oil spill much like our government policies and our beloved wall-street centric pharmaceutical companies are the villains as it relates to the disaster that unfolds each time a child is diagnosed with cancer in this great country of ours. The key difference being that with pediatric cancer you can make a difference, you can get involved and your efforts truly help. You don't have to sit on the couch watching this disaster unfold...you can do so much to make it better. Hold a Bake Sale, an Alex's Lemonade Stand, shave your head for St. Baldricks, write a letter to your representatives, tell your friends, scream, volunteer to help a small local non-profit that supports any facet of pediatric cancer, volunteer at a local pediatric cancer center, donate money, buy cookies, educate everyone you know and can influence so they know the facts about pediatric cancer and the need for their involvement in some form or fashion. To help us help Liam and others more advocacy needs to take place. Liam's story needs to be shared...people need to learn how to take action again and not feel helpless. One of the biggest problems in this country is that people don't feel they can make a difference in anything that happens and have given up trying...it just isn't so.

We with the help of many of you and thousands of others across the country have raised millions to support the needs of those on the front lines in the fight against pediatric cancer. True change will not happen until the majority takes action instead of a small minority. We know many of you will be praying for Liam and it is greatly appreciated but the best way any one of you can truly honor him and his fight is to fight with him...

Larry

Pictures.

2010-07-15T12:56:00.002-04:00

What Liam has been up to these days.

2010-07-15T12:44:00.005-04:00

Today Liam begins the two day process of scanning his little body to see the results of the last round of super harsh chemo. Please pray, believe, chant, meditate, and whatever else you can do to storm the powers that be on Liam's behalf. There are so many things to tell everyone. We have seen so much pain and suffering...but thankfully not related to Liam who, as always, just takes everything in stride. For the past 10 days since being discharged after a week stay at Hotel Memorial Sloan-Kettering, we've been holed up in NJ enjoying being away from the hospital. We've been living and loving and loving living. It's the only way to be, really. But we're focused on getting through these next few days. So, until we have some news to share, we'll share some pictures with you.

Update on our Prince

2010-06-14T18:15:00.000-04:00

We were hoping that his scans last week would show that the disease in his shoulder was nearly gone and that there was no new cancer to deal with. Unfortunately our hopes were dashed once again. A new small spot (smaller than a dime) was found in his chest and the disease in his shoulder is still present, though thought to be a bit fainter. The new spot was not present 3 weeks ago when he was last scanned so it has shown up rather quickly. The 10 rounds of radiation to his shoulder causes the MIBG scan to light up due to the cell and tissue damage present from the radiation therapy. The new spot is of some concern because it means he progressed while receiving chemo therapy. It means we need to be even more aggressive and subject him again to therapies that are as bad for him as they are hopefully good. It reminds us again why we have fought so hard to bring more awareness to pediatric cancer. Outside of chemo there are few therapies that work and hardly any that are not toxic to tender developing children. At the same time the cancer is showing that it is not simply going to go away, Liam is brighter and more amazing than ever.

Our hearts ache knowing that his summer is now going to be one filled with hardships and not the fun and sun we so desired for him. He started a round of high-dose chemo today. The same chemo regimen he received about this same time last summer (ICE). Due to the amount of chemo he has received it is expected that they will need to give him some of his harvested/frozen stem cells back to help his immune system and bone marrow rebound after the ICE therapy. Liam needs your thoughts and prayers once again to ensure that this round of therapy stops his cancer in its tracks…just like it was able to do last year.

Liam recently learned how to whistle while sucking air in and I am sure it is only just a matter of weeks before he can whistle blowing out as well. He is really into looking at bugs and other interesting things under his microscope and he is very much into Jack Johnson music. He loves to watch Jack Johnson music videos and is even beginning to memorize some of the words to his songs. I about fell off the chair when I saw him watching an old school Yogi the Bear cartoon recently. What kid these days watches Yogi the Bear? He found it on the iTunes or Netflix site. Further proof the kid is one of a kind and marches to his own drum.

Every time Liam would see a convertible he would say….Daddy we need one of those! Saying that to me is like offering crack to a crack addict. When it comes to cars those of you who know me best know I just need an excuse. Last weekend I made this simple dream come true for him. On our first drive together I looked over at him… the wind blowing in his face, his arm hanging out of the window feeling the breeze tickling his skin…he didn’t say a word. I was worried because he was being so quiet..something Liam rarely is these days. I realized he was simply taking it all in. The new found joy of sitting in the front seat, the warm sun on his face, the trees, blue sky, wind, smell of fresh cut grass. While I was thrilled to have made his convertible dream come true, my heart was heavy as I watched him relish in what so many of us take for granted…. time spent with those we love, nature, freedom to roam, our health, our imaginations. I reached over and put my hand on his leg and he then without saying a word put his hand on mine. I have enjoyed a fair amount of success in my life and have been blessed with many things but everything I have accomplished, acquired, fought for, or helped to create are rather meaningless at the end of the day. All that really matters to me is that he and other children like him have the chance to pursue their dreams and to always feel the sun and the wind on their sweet innocent faces. We fight on…we fight harder.

Commencement 2010 - Part2

2010-05-23T19:35:00.000-04:00

Part II

Commencement 2010 - Part1

2010-05-23T19:33:00.000-04:00

Mother's Day

2010-05-23T18:59:00.006-04:00

I spent this Mother's Day at my alma mater, Meredith College, delivering the commencement address. It was a surreal experience, somewhat like living in the alter world of pediatric cancer. Much of the speech focused on the very first cancer mom friendship I made with Shirley Staples. Shirley, unbeknownst to me when we met, is also a graduate from the same college with the same degree. Having Shirley be the first cancer mom I met be a fellow grad of the English Department of Meredith, a small women's college in North Carolina, was about as likely as Liam being diagnosed with cancer. Coincidence?

To the Class of 2010, thank you again for inviting me to be your commencement speaker. It was quite a day.

5-19-10 Update

2010-05-19T09:29:00.011-04:00

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I don't have much to say other than Liam is doing well. He's happy. His pain was gone after three days and his hair after two weeks. We've had a lifetime of adventures the past six weeks including a positive blood culture for a particularly nasty bacteria that could have been really (really) bad. We've been through two rounds of chemo, 10 long days of radiation, a quickly scheduled MIBG to make sure everything was "OK", transfusions galore and the all-too-familiar game of waiting for his white blood cells, red blood cells and platelets to recover. But, as is the norm for Liam, this latest detour has been a non-issue. He makes the most of it and moves on. He never complains. He inspires all, especially us to keep fighting.

So then why is it that the kid with the endless supply of good luck - he finds a four-leaf clover his first attempt at looking for the elusive lucky token, he finds lucky pennies almost every day, he is the one who can get the tricky machine that requires a combination of luck and skill to secure a prize to not only give up one but two prizes, he is the one who has gone down this awful road with none of the common setbacks and complications so many others have had - not have the good luck to keep him clean? Why? Why? Why? Why does it keep wanting to sideline my son from being all he can be? Why does it keep challenging us? Have we not done enough? Have we not advocated enough? Have we not shared enough about how painful, scary and frustrating this experience is on so many levels? Please, dear God, tell me why this cowardly beast keeps picking on my son..our son...Ella's brother...and the child who delights us all with his sweetness, charm and curiosity? He says that when he grows up he wants to be a scientist. He says when he grows up he wants to work in Dr. Modak's, Dr. Kramer's and Dr. Kushner's lab. We need him to realize his dream and make it a reality. It's the least we can do - give a child a chance to live. What do we need to do to inspire people to get involved? This is the disease that claims more children than ANY OTHER DISEASE. I don't want it to claim mine...he's too valuable to me. He's too valuable to all of us. Please tell me what I need to do to convince those standing on the sidelines watching our story to get involved. I'll do it. Just tell me what you need me to do to convince you that what's happening to Liam could just as easily be happening to your child or any child. He wasn't a heavy smoker. He didn't live a life of poor health choices eating candy all day. He wasn't a sun worshiper spending hours outside without sunscreen. It just happened. And because it can just happen is what makes us all vulnerable and what should make us all care enough to get involved. If you have children, if you like children, if you have a heart...then please stop reading Liam's blog and start doing. The time is now. Not tomorrow, not next week, now. Maybe people are tired of our story. Maybe people feel like they've done enough or want to move on to something else. Maybe it's hard to be a friend of ours because our nose is always to the cancer grindstone while trying to make it look like everything is perfectly normal on the outside. I can assure you, nothing is normal about this life...the trick is to make it look normal so that you can keep functioning.

In the meantime, we'll continue to shield Liam and Ella from the reality of their situation. We'll continue to allow them both to live, love and discover. We'll continue to advocate. We'll continue to believe that Liam will win, even if we can't see the path. We will continue to share victories and cry over setbacks with other friends in this awful journey.

I'm sorry if this isn't the entry you were hoping to read. Maybe I shouldn't post it. But maybe it's time for a wake up call. The words of Dr. Cheung, one of the brilliant oncologists who works so hard on Liam's behalf, haunt me day and night. "It's not science that's holding us back, it's funding." Great. There's a price tag on my son's head. Isn't that just dandy? Can I even begin to tell you how that feels? My son is priceless. Every child is priceless. Too bad not everyone agrees that children are precious, priceless and our future. But in my heart I don't believe that...I don't believe that's what you think. I don't believe that if you asked anyone from a stranger walking down the street to President Obama what their children means to them they wouldn't say, "everything."

No..no it cannot be.....

2010-04-05T19:20:00.001-04:00

It is never easy for me to share the kind of news I must share with all of you today. Last Friday afternoon Gretchen and I learned that Liam has once again relapsed. Cancer was found in two new locations during his regularly scheduled 90 day scans. We did not want to tell anyone until after the holiday so as not to ruin everyone’s beautiful spring weekend. We quickly escaped to our home in NJ to absorb the news and to come to terms with what it meant for Liam and our family as a whole.

The MIBG scan showed a small amount of cancer on his left leg just below his knee and a larger area on his right shoulder coming off of his scapula (bone). An MRI of his shoulder verified that it was indeed new disease and not an injury. The shoulder pain he has been experiencing the last week was due to the disease in his shoulder, not a simple boyhood injury as everyone had hoped. The low dose therapy he has been on since last fall held him for awhile but not as long as hoped. He will begin high-dose chemo tomorrow followed by radiation therapy to the affected areas and then like many we will be searching for the next best option. Liam’s most recent relapse is further evidence of the lack of effective secondary therapies for high risk kids. It is basically chemo or antibodies and if one or both cannot keep you clean then there is little to turn to, outside of a handful of phase 1 studies that have so far proven to be less effective than desired.

It is for this very reason that we must all continue to advocate for our cause, our kids, and to do all we can to raise money and awareness. It is really unacceptable that kids can survive massive grapefruit size tumors, metastasis, infections, day long surgeries, and the other endless risks they are exposed to throughout treatment and hospital stays to continue to slip backward because there is not a therapy yet developed that keeps them where we all fight so hard to get them to. NB should be a curable cancer due to the various consistent signals it presents when compared to other types of cancers; but not enough money or energy is being spent to find out it’s Achilles Heel.

Gretchen and I are focused on getting him through this once again, as is his team of amazing doctors at MSKCC. Liam has a rough couple of months ahead of him but in famous Liam fashion he is sure to make the best of it and continue to inspire us all with his courage, strength, curiosity, and love of life. Please keep Liam in your thoughts and prayers.

Liam’s recent setback has only further ignited our passion and our will to fight back against this insidious disease. In my opinion you are either fighting tirelessly to beat it or simply surrendering to it, and surrender is not an option when your child’s life hangs in the balance.

Sincerely,
Larry and Gretchen Witt

2010-03-13T00:36:00.009-05:00

It’s not an anniversary you celebrate…or is it?

February 26th, 2010 marks the 3rd anniversary of Liam’s diagnosis. Three years. Three long years that have gone by faster than I can say the terribly ugly word: neuroblastoma. In three years I haven’t exercised, been to a dentist, or done many of the other things I used to do BC (before cancer). In three years the mundane worries that used to occupy me have vanished. For three years we have lived in a world of terror, happiness, fear, hope, anxiety, peace, and above all love. I never knew the capacity for love could be so deep. For three years we have loved like there’s no tomorrow while trying to live like there is a tomorrow. For three years we have learned, not always gracefully, to live with a level of stress that goes beyond any description. It feels like you’re walking on a mine field hoping and praying you’ll be one of the lucky ones to make it to the other side while you see comrades falling all around you. You stay focused on the goal, but your peripheral takes in everything that’s happening around you. For three years we have seen too many families lose children decades too early. The trail of tears they have to walk as they struggle to live without their child is a journey too painful to comprehend. It has left me unable to write. I didn’t know there could be this much pain in life. I didn’t know there could be this much joy. I have no complaints and Larry and I consider ourselves incredibly lucky to be able to shower our two sweet children with every ounce of love we can…every day. A few nights ago Liam asked me to kiss him good night 200 times. I did without hesitation and would have kissed him 2,000 times if he had asked. You learn to never miss the opportunity to love.

On the night of the third anniversary, sweet Jessie’s mom sent me a brief text message in the evening as I was struggling to wrap my emotions around the significance of the day. Her text said she was thinking about me on the day that both of our children’s lives were forever changed. I had forgotten that Jessie was diagnosed on the same day and year as Liam. And while her family has found comfort and solace in their God, I would be lying if I said the pain of her departure still doesn’t hit me hard. I don’t have the same level of solace…not because I don’t have the same faith but because I just miss her.

But Jessie’s mom’s text reminded me that yes, this is an anniversary to celebrate. We are here…together…which makes us so lucky.

I have fits and starts of so many blog entries. Stories of Liam and Ella as they grow, learn and discover together. Stories of trips to the Museum of Natural History to visit Liam’s favorite room – the Gem Room - that is filled with geodes, minerals, gems, quartzes, and lots of other things that make Liam “oooh” and “aaah” with excitement. I tried but then the pain of someone else’s situation would invade my head and I would lose my will to write. Just this week a sweetheart of a little girl named Layla Grace and a valiant little boy named Sam both lost their battles. And before them, an incredibly gifted young man named Erik lost his battle after being in remission for 13 years. And before Erik there was Santi. Santi who was nothing but sunshine. And before him Pierce whose intense gaze would pierce my heart with love. It takes my breath away and leaves me numb, fumbling and stumbling. I would try to write, but instead choose to go to Liam’s and Ella’s room to kiss them while they’re sleeping.

And then there’s our philanthropic work which takes up our second work shift of the day. Every night we put the children to bed and then pull out our computers to work. Cookies for Kids’ Cancer is our mission. Cookies for Kids’ Cancer is our passion. It’s something we have no choice but to do. Every child deserves a fighting chance and knowing there are treatments waiting for funding in order to be developed are nothing short of heinous in our minds. If children are our most precious resource, then please explain to me why we wouldn’t do everything in our power to protect them? Why? If you knew there was something you could do to stop the pain of losing a child to cancer, why wouldn’t you? Sometimes when we’re working we see Glad’s Cookies for Kids’ Cancer commercial on TV and stop for a brief moment to watch it…and then go back to work with an even greater sense of urgency. There’s no time to waste and we’ve both gotten pretty good on less sleep. And the work has yielded funding for trials at leading pediatric cancer institutions that we hope will offer more children more options. We read every bake sale registration, more than 700 in November and December, and shook our heads in appreciation that people cared enough to want to get involved. We exuded gratitude with each letter we received from people describing their bake sale and what made it unique. The organization has grown and flourished, but there’s more trials to fund and work to be done. One day at a time.

Our fall was filled with uncertainty as we waited for questionable areas on scans to either clear up or “declare” themselves. When a team of a dozen doctors needs to interpret what is being seen on a scan of a child, your child, it certainly leaves you with an uneasy feeling. But we try to push those demons down below our feet and focus on the present of a little boy who feels great and a little girl who calls that little boy her “best friend ever.” The fall included a magical trip to the Florida Keys where Liam learned how to dive and do a flip into a pool which gave him immense joy. The dynamic duo literally spent the week outside in a collection of comfortable chairs on the porch they positioned face to face to form a mini pod. Between swimming sessions or searching for lizards, they ate all three meals of the day in the chairs, watched movies in the chairs, read books to each other in the chairs, napped in the chairs, played Spiderman and Princess in the chairs, practiced writing letters and numbers in the chairs, and sometimes would squeeze together in the same chair to snuggle with each other in one chair. We saw sharks, manatees, fish, and other sea creatures swimming under the dock that was next to the house. We saw the most vivid sunsets across the bay. Liam and Ella reveled in sleeping in a bunk bed…Liam on the top and Ella below her big brother. Every night around 7:00, hours before his normal bed time, Liam would announce he was going to bed. He just couldn’t wait to climb up the ladder to the top bunk. He and Ella loved the experience. We swam with dolphins, sting rays and a sea lion named Mimi who we still talk about every day. It was a gloriously simple vacation and incredibly restorative.

The fall also ushered in the crazy process in New York City of finding a kindergarten, the right kindergarten, for Liam next year. The process includes school tours, play dates without parents where your child is evaluated by school personnel to see if they’re the “right fit”, a standardized test equivalent to the SAT, parent essays, long applications asking questions like “What do you as a family like to do together” (how do you explain that your answer is as simple as just being together, something never taken for granted?), a secret visit by prospective school personnel to observe Liam and other applicants in their classroom, and a parent interview that Larry and I could not make it through without crying. It would start out innocently enough but then the question of, “tell me about your son,” would usher in a wave of emotions and a flood of tears. How do we explain to someone we’re meeting for the first time what our son is like and what he has been through? Do you have a few hours and we’ll give you the Cliff Note version? The fall was also filled with weekly sessions of low dose chemo – one week on and two weeks off. One Wednesday in the fall I dashed into Liam’s school to whisk him off to the hospital for day three of chemo. As I rushed in the door, faces dropped with a look of surprise. Liam was off with a tester who was administering the standardized test that would determine his chance of securing a spot in a kindergarten class. He had a two-inch needle piercing through the thin layer of skin under his collarbone into his medical port, an eight-inch tube dangling to his waist, had spent the morning throwing up before he went to school, and was taking that equivalent of an SAT test? What’s amazing is that the narrative report written about our son talked about how engaging he was, how inquisitive, a “true delight,” a pleasure to be around and a “joy to test.” It didn’t mention that he has been battling cancer or that he had a tubie dangling down his front. The tester couldn’t tell and he certainly didn’t feel like It was important enough to mention he had a “tubie” in. He acted like any other little boy which is exactly what he is. Liam still thinks of himself as completely “normal” and no different than anyone else. And while he’s beginning to ask questions about why he goes to the hospital so much more than other people, he hasn’t asked if there’s something wrong with him. To him, it’s normal to ride his scooter into the hospital, get some medicine for an hour, and ride out. It’s exactly what we’ve always wanted for him – to be normal. We have always maintained that our job is to worry and his job is to be a little boy. We are fortunate we have been able to maintain this position for the past three years. And we’ll do it for the next three years, and the three years after that, and the three years after that, and so on and so on. One day at a time.

On our most recent trip to the Museum of Natural History, he stopped to talk with a museum employee who was on a giant hydraulic platform that was about to lift him up to the top of a totem pole. “What are you doing?” “I’m getting ready to clean the top of this totem pole.” “Why?” “Because it hasn’t been cleaned in almost a year.” “Hmm. That’s cool. {Pause and contemplation.} I’m going to work here some day. I’m going to be a scientist and I’m going to work here some day. I just thought it would be a good idea for me to tell you.”

As much of a science guy as Liam is, he’s also a music lover. He falls asleep every night listening to Jack Johnson’s soundtrack to the movie Curious George. He talks about how it calms him. His favorite day time song is “Sunshine and Lollipops.” We listen to the song over and over and over again. He knows all the words and loves to watch an original video of the singer performing it on YouTube. Listen to it and then watch Liam in your head doing a special dance to celebrate a song that makes, as he says, his heart happy. We live savoring the moment and having nothing but faith and conviction. Our lives are richer. Our lives are sadder. Our lives will never be the same as they were three years ago. But we dance to Sunshine and Lollipops every day.

Facebook: www.facebook.com/cookiesforkidscancer
Twitter: @cookies4kids
Glad/Cookies for Kids’ Cancer TV Commercial: http://www.youtube.com/gladtogive

11/09 - Chef Liam baking cookies

2009-12-16T01:06:00.001-05:00

Please stay tuned...

2009-12-15T22:27:00.004-05:00

I have been sitting here trying to think of a title for this long overdue update and after a few options presented themselves I opted to simply name it Please stay tuned...
At first it was simply a way to open a post many of you have been waiting to read for several months. Hopefully though by the end of this post it will encourage you to stay tuned and maybe help you understand why posts have been so few and far between.

Liam's most recent relapse really caught us by surprise, and to be honest really knocked the wind out of our sails. To think the bad news we always half expect to hear could hit us so hard, shed new light on the reality of what we were up against and sent us deep into our hole. We have not had the strength to share our innermost hopes and fears like we have been able to for the last two plus years. We were angry, scared, and needed time to heal a bit and to find our voice again. Over the last few years we have witnessed too many families lose their children to cancer. Some very close to us whose children we wanted life for as much as our own. We have learned the facts about why pediatric cancer is so many years behind when compared to the medical advances made for most adult cancers. We have been living in two completely different worlds and we often do not feel like we really fit in or relate to those in one and the other is not one we want to be in and would do anything to get out of. Imagine all that we have experienced in the last few years and the pain we have witnessed Liam endure, the never ending fear, the never ending feeling of helplessness we live with, and all while the world spins madly on around us. I sometimes think that maybe we have done too good a job of handling this curse. We have met it head on and taken it in stride. We have remained endlessly hopeful, committed, and as some have said a force to be reckoned with. But much of this courage, strength, and ability to balance our lives between the two worlds came to a crashing halt when we learned of Liam's second relapse. It was a sucker punch. One thrown by a coward when we were not looking. One that sent us to the ground grasping for air. The wound inflicted was deeper than any before it and it is one we doubt will ever truly heal. Each day suddenly required so much more energy to get through it that any task requiring above and beyond emotional input was outside of what we were capable of enduring. The blog as you know was the first emotional baggage to be thrown overboard. All available energy and focus went into things that can't be thrown overboard like our kids, Liam's care, work, and Cookies for Kids' Cancer, the foundation we started. All things we were more committed to than ever before. So hopefully those of you who have stood by us over the last few years will understand why putting our feelings into words the last few months has been a bit more difficult than we expected. I know Gretchen who has posted the large majority of our postings has found it very difficult and many of you know I all but abandoned posting more than a year and a half ago for similar reasons. For me it was due to the reflective nature of writing such posts. It often forced me to recognize personal feelings and fears that were often painful to acknowledge. I chose instead to keep them bottled up. Needless to say I will once again begin to post news about Liam, his adventures, treatment plans, and to share insightful stories about our hero. We know many of you have a deep love or him and it is only fair that we keep you up to date on the Prince on a regular basis. He continues to inspire us, his doctors and nurses, teachers, friends, and all who have the pleasure of knowing him.

This week Liam is receiving his 6th round of low dose chemo. Each day so far he has attended school in the morning and treatment in the afternoon. This is not a treatment intended to cure him but hopefully it will hold his cancer back for awhile. It does provide him with excellent quality of life right now and another reason we have been silent. We recognize more than ever that time with Liam, and Ella too for that matter, is truly precious and we need to take advantage of every second we are blessed with. There are a few treatment options being discussed but none of them the sure bet we desire and that Liam needs. Each just a trial. Some older trials and their success rate or lack there of known, plus newer trials not yet proven effective or in some cases even safe. We have the option of receiving more 3f8 antibody though it has not been proven truly effective against soft tissue disease which Liam has been prone to.
We have some hope for the humanized version being developed at MSKCC and hope that it can be brought to the clinic sooner than later. We and many of our closest NB families are dealing with relapses and time is something we all realize we have little of. It is hope that gets us all from one day to another. Hope that science can win the battle against neuroblastoma and pediatric cancer as a whole, hope that our efforts will help make a difference, and hope that all of you will stay tuned! We continue to need your support, love, and hope. We need each of you to help us make a difference and to be advocates for pediatric cancer...for Liam, for Cookies and all that we are trying to do to help make a difference. If you are new to our blog please take some time to read the archives to gain a true feel for our journey and how we have arrived at this point this point in time. We are looking forward to a magical holiday season filled with love,joy, and discovery and wish the same for each you and your families.
By the way there is still time to order cookies and have them arrive by Christmas or take your time and send as a New Year Gift. www.cookiesforkidscancer.org

2009-09-16T00:41:00.000-04:00

My name is Liam. “L” - “I” - “A” - “M”.

Today was day two of round three of low dose chemo. It’s not so bad…compared to what he has been through. He has a full head of baby soft hair…except for the oval-shaped spot on the back of his head courtesy of a pressure wound while on the bloody bi-pap machine at Cornell. I have to restrain myself from marching him over to Cornell to say – “Hello, Remember me? I’m the mom who you thought was crazy when I told you his head had a HUGE goose egg growing out of the back of it from the tight straps around his fluid swollen body and you totally dismissed me? Well, look at his head now! I told you something was wrong!” But that would only upset Liam and I’ve been told his hair will eventually grow. I suppose it’s one of those concerns that’s a bit down the worry list but I’d be lying if I said it doesn’t irk me. He has regained a lot of his energy, so much so that he outpaces Ella when we’re out on scooters but he’s still suffering from a raw esophagus from radiation that makes eating and drinking impossible without narcotics.

Daddy was out of town this past weekend so we spent the weekend out and about town on scooters. Ella’s is pink and she wears a princess helmet. Liam’s is orange and he wears a Spiderman helmet. Mommy’s has no color but has a board wide enough to accommodate Liam and Ella when they get tired of scootering. Yes, all three of us can squeeze onto my scooter, albeit very carefully. We were outside for hours on our scooters on Saturday exploring the Hudson River Parkway…in the pouring rain…and loving every minute. We came in for a break and then it was Liam who announced he wanted to do more scootering….so out we went for a night time jaunt from 44th Street and 10th Avenue to 58th Street and 8th Avenue. Two of the blocks were on a fairly steep incline which Liam went up without any struggle while Ella had to walk her scooter up the hill. Liam had one face plant – head over the top of his scooter handle – but not while going very fast. He scraped his nose, but not badly, but enough to scare him and cause a scab. As I was crouched on the sidewalk comforting him, I was in a strange way happy to hear him crying over something so normal as a scraped nose instead of a personal violation courtesy of cancer treatment. On Sunday we scootered for hours along the Hudson River on a picture perfect gorgeous September day. We had an amazing day laughing, loving and being together. We explored piers, checked out every sight along the way from a helicopter launch pad to a restored fire boat built in 1931, and watched a cruise ship makes its way along the river on the way to the Atlantic. In our pack, Liam leads, Ella follows and I stay close behind reminding Ella to keep her eyes forward and looking for bumps. Liam points out bumps to Ella and yells warnings to her. It would be Ella who would get tired and insist on catching a ride on Mom’s scooter, not the cancer patient who has been through more than I care to recount and who has every reason to be the one who tires first. He reminds me of Lance Armstrong….he does what everyone else thinks is impossible. Every time they dynamic duo went down an incline of any sort, there would be hoots and hollers and squeals of laughter. Liam has absolutely no fear of speed…and there’s a transfer of fear to me as I watch and pray he’ll be OK.

He took the hospital by storm…on his scooter. On Monday he rode into the hospital on his scooter and took great pride in showing off his new mode of transportation. He couldn’t wait to show Dr. Kushner how fast he could go on his scooter, a feat on many fronts. Ella was also along for the trip, as our new regular hospital team member. When it came time to access his port, he looked at me through tears and asked if he’d still be able to ride his scooter and I assured him yes. He also asked when we would be done with all this medicine stuff, to which I replied as soon as we possibly can be. And sure enough, after the insertion of a needle into his port which has a 7” long tube attached that snakes to his waist and before he would allow a shirt to be put over his head because of fear of disturbing the tubie, he tested riding his scooter.

Today he felt some of the side effects associated with one of the chemo drugs. When we got home, he had to take the remaining two of three chemo pills. As soon as the pills were down, he looked at me and said, “What if I have to throw up?!” I begged him to calm down and relax and not throw up but within 20 seconds he was running to the bathroom with me following and exploding with vomit that consisted of curdled milk and bunny crackers. It was so powerful it flew out his nose. He wretched and wretched and I saw the chemo pills come out with the powerful waves of nausea. And then, knowing that if he didn’t take those two pills we’d have to go back to the hospital which would mean he wouldn’t get to visit with his special friend Taber who he adores, I reached into the toilet and the sifted through the vomit until I retrieve the two pills, rushed them over to the sink, rinsed them off and then started blowing on them to stop the process of the gelatin capsule from disintegrating which would make the pill useless. It was a knee-jerk reaction. I don’t normally forage through vomit, but I would do anything to let Liam have a play date he was so looking forward to. After we cleaned him up and rinsed out his mouth, I looked at him and said, “Buddy…here’s the deal…you either take these two pills (which were standing upright stuck to my fingers but still intact) or we have to go back to the hospital to get two more.” He looked at me, asked if they were still OK to take, took my word that they were, opened his mouth and pulled the pills off my fingers and swallowed them. And once again I say that he is my hero. My poor guy who is still can barely eat or drink because of radiation burns to his esophagus did what needed to be done in order to move on.

Today there were special visitors at the Pediatric Day Hospital. Three Yankees players came to say hi. Now, Liam doesn’t know who the Yankees are nor has he ever watched a baseball game. He knows the sport from having learned about it firsthand. He and Ella stood at the front of the crowd looking at the larger than life players trying to understand what the big deal was. After the presentation the players signed balls for all the patients. Liam picked up a ball, walked over to Andy Pettitte, placed the ball on Andy’s knee, borrowed Andy’s pen, very slowly and deliberately wrote his name on the ball and handed it to him. Andy looked at the ball with complete surprise and wasn’t quite sure what to do. Liam then said he had to give the ball to his mom and walked away. When Liam showed me the ball with his signature, I explained that usually people want the baseball player to sign the ball, not just borrow the baseball player’s knee. He wanted to know why. So I explained he’s a very famous baseball player and people like to have baseball players sign balls as a special gift. He was completely perplexed by the concept of wanting someone else’s autograph, but decided to go along with the idea. So off he went…back to Andy Pettitte to ask him to also sign his ball….which Andy graciously did. And after he came back to show me the ball with two signatures….Liam went back over to Andy one more time to give him a big kiss on the cheek which Andy welcomed from the little boy who didn’t exactly follow the flow of the way such situations normally unfold. And as Andy and the Yankees crew were leaving, yelled out…”Bye! Thanks for coming!”

Ah Liam…you are one of a kind.

Clean Scans?

2009-09-10T08:48:00.002-04:00

Clean Scans?

Yes….but. Liam had two scans – a CT on Friday and MIBG on Saturday. The CT was clean with a qualifier and the MIBG is negative. There’s a spot between his kidney and liver in the site of his original tumor that was on his last scan – the one done during our long inpatient odyssey in July to search for fungal pneumonia. This was the CT that showed his primary tumor had shrunk by 50 percent after one round of ICE, the super-tough chemo regiment that brought tears to a mother’s eyes when she heard we were doing it. The spot is still there but is MIBG negative and it’s something that would be big enough to be MIBG positive. It’s also something that Dr. LaQuaglia, Liam’s surgeon who also qualifies as surrogate grandfather, thinks is post-operative change. He studied the images and compared them to his surgical report and said it was an area he was definitely “in” searching for signs of neuroblastoma during Liam’s surgery. It’s an area that has been through three surgeries. It’s an area that has seen a lot. He, apparently, feels quite confident it’s not neuroblastoma. Liam’s MIBG scan is clean, the gold-standard for neuroblastoma, which is a huge relief. Our sweet guy whose new passion is dressing up as a SWAT team member is one who is MIBG “avid” which is a good thing because it’s a reliable test. (In case you’re wondering, his first relapse which showed on a CT but not on an MIBG was so small that it wasn’t large enough to show up on an MIBG scan. This thing is bigger and would definitely light up on an MIBG.) But because neuroblastoma is a resilient and cunning beast…we can’t take any chances. There’s no opportunity in this game to say, “We should have.” We are moving forward with another round of low-dose chemo beginning Monday which means Liam will be going to school while on low-dose chemo. (I wonder how many preschoolers can make that claim?) In four weeks we will rescan and when those scans show no changes because I know they will, we will move forward with the NK Cell trial. NK, for those not familiar, stands for Natural Killer. Here’s where we get into wacky, weird science. I don’t know enough about natural killers to be able to explain it….but I know that my blood and Larry’s blood will be tested to see which one of us is a “mismatch” to Liam’s blood and can give him an “ingredient” that’s missing that would then make 3F8 antibodies more effective. Liam will be the second child to participate in the NK Cell Trial. The first child to participate in the NK Cell trial is a sweet little girl from California who had persistent neuroblastoma that just wouldn’t go away…no matter what was thrown at it. I remember talking with her very worried looking mom about her daughter becoming a part of a very new trial that sounded a bit like Star Trek science. I remember seeing her look even more worried leaving the IV room after having her blood drawn and looking a bit discombobulated having to be the one receiving a poke instead of watching her daughter. I remember being scared for her and wanting to run up to her and give her a hug, but was tending to Liam who needed me. I remember seeing her a few weeks later on the day they were to receive the results of her daughter’s scans post NK Cell. A lot was weighing on those scans. The weight of the world. She and her husband looked so nervous but we were all trying to act like it was just a normal day…in a pediatric cancer ward. I saw her, her husband and children in the late morning. I can’t remember why Liam and I were at the hospital that day. We’ve had so many trips it’s hard to keep the details of each straight. I remember wishing and hoping so, so, so hard for them to receive good results. I didn’t see them again that day. But that afternoon there was an e-mail about the nothing less than miracoulous scan results following NK Cell. Tears flowed freely down my face as I read the account. I was so moved I forwarded her update to a few friends. Tears flow freely down my face now as I remember reading her update. Her scans were completely clean. Completely and unequivocally clean…because of a trial that was funded in large part with private donations. Think a cookie can’t make a difference? Think again. Every bit counts. I recently heard Katie Couric being interviewed about her philanthropic work related to cancer research funding. During the interview she explained to Larry King how important the private sector is advancing cancer research and used the statistic that eight of our 10 clinical trials are funded with private funds, not government funds. Eight out of 10. Eight out of 10? I was stunned to hear the number and stood mesmerized in front of the TV taking notes. Katie’s platform was that if we are going to make a difference in this war against cancer, we all need to work together. I firmly believe that it is not science that is holding us back, it’s funding. What if there wasn’t funding for this trial? How long did it take to fund? And reading the update from the mother who saw her daughter’s disease disappear because of a trial that weeks ago hadn’t been available served as reaffirmation to keep doing everything possible to impact change. No one else is going to take care of this – it’s up to us – you, me and everyone we know. There are ideas, hypothesis and theories just waiting to be developed that have no funding. And that, to me, is the greatest injustice. What would you do if you knew you could be part of saving someone’s life? By raising money for research which includes funding trials, that’s exactly what you’re doing, saving lives. And wouldn’t that be an amazing feeling knowing you were part of something that had the ultimate impact? We’re into the month of September which is Pediatric Cancer Awareness Month but in every store I visit, magazine I read, commercial I see….I am bombarded with a sea of pink. Now, don’t get me wrong, Susan G. Komen and her sister are my heroes. Susan’s sister was so outraged at the loss of her sister she decided to do something about it and changed the way we as a society think about breast cancer. I am so grateful for the work she has done and I hope I never have to be a beneficiary of the advancements she and legions of others have made on breast cancer treatment. But couldn’t there be just one commercial….one display in a retail store….one magazine story about pediatric cancer to note Pediatric Cancer Awareness Month? Just one? Being the number one disease killer of children in the U.S. would seem to make it worthy of highlighting, right? And if you’re not sure how funding can help…use the sweet girl from California as the poster child as inspiration. Clinical trials save lives. And if you cut funding to clinical trials, which is what has been happening, you are essentially telling a family that there is no money to save their child. If polio could be eradicated through a campaign calling for the collection of dimes, why can’t pediatric cancer? Shoot, I’d settle for all trials waiting to be funding to be funded.

Liam’s good, relatively speaking. He’s dealing with radiation burns to the inside of his esophagus that cause him great discomfort only relieved with narcotics. Eating and drinking is only done with the help of a pain killer. This morning he set up a weather station on the roof and is bubbling over with the excitement at being able to forecast weather. He can’t wait for school to start. He was watching You Tube tonight about how smoking damages lungs and explaining to Ella what was happening, “Ella – those are arteries…see them? They’re bigger than veins and carry more blood. And those there are red blood cells – they look like donuts. And the big ones are platelets.” And then he moved from discussion about platelets to his new passion…a Nintendo game thing that I totally don’t understand but that he has fallen in love with. It’s one of the ways I know he really is a little boy. I love him so much. I love watching him protect and take care of his sister whether it’s putting toothpaste on her toothbrush or reminding her that school is starting soon and she’s going to need to get up earlier. He wants to be the older brother blazing the trail for his sister. And Liam, we’re doing everything we can to help you keep blazing trails because we know you have a lot to do.

NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. All it takes is a few clicks to support pediatric cancer research. Please. See the Facebook page and/or website for details.

2009-09-07T17:53:00.003-04:00

The Dynamic Duo at The Hayden Planetarium the Day before Liam's Surgery

NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. See the Facebook page and/or website for details.

"The work goes on, the cause endures, the hope still lives, and the dream shall never die."

- Senator Edward M. Kennedy

The Tunnel.

A few weeks ago Liam and I were in the car returning home after finishing the fifth and final day of the first round of low dose chemo. It was 10 days after his long and complicated 8-hour surgery. It was five days since he had been released from the hospital. We were still in that “giddy to be out of the hospital” mode reveling in how beautiful the sky is and how great it is to feel a breeze. We entered the Holland Tunnel which, per usual, was heavy with traffic. To enter the Tunnel there are a series of merges where cars alternate moving forward as many lanes merge into two narrow lanes to funnel traffic under the Hudson River. A few lanes away on the right I could see a black, shiny hearse approaching the Tunnel. I avoid hearses at all costs and never want to be near them. My heart started to beat a little faster as I tried to calculate where I was in relationship to the hearse to hope that we wouldn’t enter at the same time. Entering the Tunnel, I was just slightly ahead of the hearse and tried to do everything I could to avoid looking at it in my side mirror. If I don’t see it, it’s not there. Then all of the sudden my lane stood still while with the hearse kept moving. Very soon the shiny hearse was one car ahead of me. It was right there. I couldn’t avoid seeing it. The walls of the Tunnel narrowed as I felt the presence of the hearse. I kept trying to get the traffic in my lane to move faster by driving as close as I possibly could to the car in front of me. I willed the traffic to move faster. I prayed for the traffic to move faster in my lane. My fingers tightened around the steering wheel and my hands began to sweat as Liam and I discussed how rocket ships go into space, how glass is made, why dogs slobber and other pressing curiosities. I had to get past the hearse. I had to beat it out of the Tunnel. I couldn’t let it win. Back and forth we traded positions. Liam and I kept chatting about all things Liam while he sang along to Jack Johnson who he calls “George the Monkey” singer. “Upside Down….We’ll find the things that can’t be found…we’ll share our love with everyone….and there’s no time to waste….and this world keeps spinning round and round and upside down…we’ll be together till the end of time…” The race with the hearse silently continued. It was a race I was determined to win. I had to win. And then the traffic in my lane stopped. All I could see were red lights ahead. The hearse cruised past me. I was crushed. It was way up ahead and looked unreachable. And then traffic started to move in my lane. I could see the hearse way up ahead. My lane inched forward painfully slow. My heart felt like it was going to pound through my ribs. I had to win. I could not follow the hearse out of the tunnel. I had to win. Very slowly I pulled in line with the hearse. It was right next to me. And then ever so slowly I passed the hearse. I was a half a car ahead and then one car ahead and then two. But I knew at any moment things could change and it could be ahead of me again. I knew the end of the Tunnel was coming soon but there was still enough room and time for the hearse to pass me. And then all of the sudden traffic in my lane shot ahead. I considered changing lanes so that I could guarantee a win. The ticket would be worth it, although explaining to an officer why I switched lanes could be challenging and then explaining to Liam would be worse. I stayed in my lane repeating “come on…come on…come on…drive…drive….drive.” I couldn’t think about anything else as I maintained a steady banter with Liam the Inquisitive. I had to win. I would win. I had to win. I could see sunlight shining ahead. I knew the exit was just up ahead. I could see the top of the hearse several cars back in my side mirror. The road bent a little and a flood of sunlight came into the tunnel. It was so close. As we exited the tunnel the hearse was three cars behind. We made it! I wanted to throw my arms up in the air and do a dance like an NFL football player in the end zone after completing a tricky touchdown pass. But instead I told Liam I loved him and thought we should stop at a farm on the way home where we could cut our own flowers to which he replied, “that’s a great idea Mommy. I’ve always wanted to do that.”

My apologies for the “radio silence” and any fears our lack of communication has caused. We’re OK. A bit worn, but OK. We’ve been in the tunnel and focused. When we first got the news, I had to quickly regain my footing and brace myself for being plunged back into the cancer groove. It wasn't easy and I'm very grateful there were others to help support me from nurse practioners who let me cry on their shoulders to a deluge of supportive messages. For the past 10 weeks Liam and I have become one again. We read each other. Too well. He knows if something is wrong. He asks more complex questions although he still hasn’t asked the big one – “Is something wrong with me?” We assumed the roles we know too well. I know how to crouch in just the right position to cradle his head in the crook of my neck while holding a throw up bucket while he’s on the toilet exploding with diarrhea. He knows how to hold his throw up long enough for me to grab a throw up bucket which is always within an arm’s reach. I know how to pin him to my chest so that a nurse can access his port while he’s screaming at the top of his lungs and thrashing with all his might from fear and anxiety. He has retrained himself to do his hospital time without complaining. He didn’t ask why but I did. "Dear God, why can’t Liam have just a normal summer filled with no obligations except having fun?" Why does his summer camp have to be the hospital? Liam is like a cat – he always lands on his feet – so why is this happening? He’s the child who on his very first try of looking in a field of clover for a lucky four–leaf clover found one. He reached down and pulled out a lucky clover as if it was no big deal and couldn't understand why we were all astonished. This is the child who had no delays and no complications. This is the child who his father, sister and I love more than anything. Was it something I did? Was it something I didn’t do? Why?

In 10 weeks Liam has been through the proverbial ringer…but you’d never know if you talked with him. His daddy and I notice subtle changes in his personality – he’s a bit more cautious around certain things and can easily work himself up into a nervous energy he didn’t have before - but for the most part he’s Liam. To him it has been a normal summer. After all, this is the third consecutive summer he has spent his summer vacation in a hospital. He has had scans including a very long full-body MRI which he did without anesthesia; he learned how to spell blood having seen it so many times around the hospital being wheeled down hallways to and from appointments; undergone two surgeries – one to place a port on the Monday after we got the news (he started chemo on Tuesday) and a second “big” operation with the talented Dr. LaQuaglia who scoured his body to extricate anything that looked like cancer; radiation directly to his body cavity while he was opened up during surgery using a special applicator that is a one-of-a-kind apparatus made of a combination of silicone and rubber to conform to the terrain of a patient’s body and developed by three doctors at Memorial Sloan-Kettering (let’s not even talk about how bizarre it is learning there is a team of 10 from radiation including three physicists who swoop into the operating room to receive a report from the surgeon on where he found cancer and map out a radiation plan on the spot); a round of really tough high-dose chemotherapy called ICE (when one cancer mom heard we were doing ICE she had to hold back the tears as she looked at me knowing how difficult the regiment is); a very grueling 16-day hospital stay post ICE while his bone marrow recovered enough to start producing blood cells and platelets which was marked with eight days of nonstop fevers every three and a half hours that at the onset caused his entire body to shake uncontrollably to the point that he would start violently coughing which would cause him to throw up even though he had no food in his tummy and have a bout of diarrhea – a process that would take an hour and a half to get under control which would give us another hour and a half respite until it started all over again; a move to a new apartment which Larry had to navigate without me and Liam since we were in the hospital; an emergency CT scan on July 4th which had to be postponed until July 5th because no radiologist would come in to read the scan on a holiday to see if he had fungal pneumonia which would explain the violent coughing (one doctor’s explanation about why a radiologist wouldn’t come in on a holiday was a dry, “no one cares about kids”); an ambulance ride to and from Cornell ICU – the first of which he was unconscious and on a ventilator for and the second he was awake and enjoyed; a four-night stay in Cornell ICU post-surgery (which could have been two but there were no beds available at Sloan-Kettering) which was highlighted with Liam pulling out the ventilator tube helping him breath and the NG tube draining his tummy on his own 12 hours after his surgery even though his arms were restrained – he was in a room with three patients, two nurses and a doctor and I was taking a 20 minute cap nap with my head on the foot of his bed and woke up when I heard him trying to talk to me - which caused a huge scary scene in the ICU of people rushing to his bedside with the expectation of reinserting the ventilator tube which I said no to since he obviously was feeling well enough to remove the tubes and no alarms went off indicating he wasn’t breathing well (“Mommy – I felt the tube and I didn’t like it so I just pulled it right out”); the placement while in his bed in ICU by Dr. LaQuaglia of a new chest tube to drain the fluid collecting on his lung that was causing it to collapse the day after surgery; two rounds of low-dose chemo which is a cake walk compared to high-dose chemo but still requires multiple trips to the hospital, fatigue and diarrhea; a radiation set up which included making a new mold of his body and adding new tattoos on his chest (the last time he was tattooed was under anesthesia…this time it was with numbing cream and yes, they use tattoo ink and yes, it is permanent); 10 days of radiation twice/day that spanned three weeks since it started on a Friday; burns to the inside of his esophagus from radiation which makes swallowing extremely painful only lessened with nonstop narcotics; a two-night hospital stay after a fever with low blood counts; multiple transfusions including a platelet transfusion that caused his throat to become restricted and his body to break out in angry hives followed by an emergency dose of another medicine in a little plastic IV bag to reverse the effects to make sure he didn’t stop breathing; and as of this post the nervous energy of waiting for scan results since getting a CT on Friday afternoon and MIBG on Saturday during Labor Day weekend. (Yes, they scan on Saturdays.) There are so many medical checkpoints that occur throughout a day to maintain a child’s health when they’re in the hospital. If you think about it, it’s almost too much to comprehend how any can live. We humans are a pretty darn complicated. We have been through so much – moments when time was measured moment to moment, blood gas level to blood gas level, CBC to CBC. And as much as is happening on the medical front, there are just as many stories to relay about Liam being a boy full of wonderment, inspiration and graciousness. He never once has lost the essence of who he is – a sweet, inquisitive little boy who loves with endless reserve and with no reservations. When we were discharged from the hospital after his 16-day stay where he missed the July 4th holiday, his first request was to go to a toy store to get a present for Ella…and maybe one for him too. He has lost weight, lost his hair, regained the weight, lost it again, and is now working on regaining the weight and his hair which has sprouted a peach fuzz all over his precious head. He loved pulling out his “magic hair” to give to people – something that newcomers to magic hair received with a bit of shock, surprise and astonishment. He discovered the magic of Star Wars and Magic School Bus. Star Wars quenches his thirst for space and discovery while Magic School Bus gives his science-oriented mind answers to endless questions. We have examined work sites in the hospital watching workers as they repair, install, and inspect. He is now a doctor in training with his own white doctor coat that is adorned with a real stethoscope that is blue (he picked the color), a small orange light for checking patients’ pupil reactions, a notebook and pen in the pocket because that’s what his doctor has in his pocket, a small quacking duck to make his patients laugh, a bottle of Purell, and a real hospital photo ID that bears his signature and is attached to the breast pocket of his coat with a retractable string like all doctors and nurses. (It was one of those classic Liam moments – he confidently strode into the hospital security office wearing his white doctor coat and respectfully but determinedly announced he needed a photo id. And he got one.) He rotates wearing the doctor coat with his other hospital outfits – Mr. Incredible and Superman, appropriately. We’ve tried to live as much in the carpe diem spirit as possible and do…not talk about doing. We’ve been to the Museum of Natural History and Hayden Planetarium, visited the Children’s Museum, run through water fountains; ridden the Roosevelt Island Tram, walked through Central Park to smell the wonderful smell of grass and trees; strolled through Times Square to look for the man with the albino Python and marvel at all the lights; gone to the movies which is a new activity; and seen The Lion King on Broadway which we’re still reliving and singing the songs to. Ella has been with us on many of our adventures and many of our hospital days which has been really nice. She adds a certain element of comic relief and loves being with us as much as we love having her around.

We have greeted newcomers to the cancer world including the mom I met at 5 a.m. one day on her first full day at Memorial Sloan-Kettering after he son was diagnosed with cancer during a family vacation on a cruise ship off the coast of Greece. We have shared scary and sad news with friends. We have seen other children lose their battles. We said good bye to baby Pierce and his wonderful family as they returned to Oklahoma to shower their precious boy love and comfort. And we have seen other friends looking great. We have never lost faith. We have no reason to. We have never lost hope. We have no reason to. We have, though, worked very hard at keeping Liam and Ella happy and imprinting every laugh, smile, “I love you,” and snuggle on our souls. We have been in our tunnel and completely focused. It has not been easy but who said being a parent was going to be easy? Liam is our hero and Ella his adoring princess in waiting. Liam has made one change about his future plans. He has decided he wants to go to Princeton because it’s not too far from us and their school color is orange, his favorite color. He talks about going to college quite frequently. He can’t wait to learn about science, lightening and electricity stuff. Oh, and be a space guy fixing satellites.

Thank you to everyone who has prayed for us, sent good wishes, musical cards, special treats, visited us at the hospital, visited us at home, brought meals, and been there for us. Your support means the world to us and helps keep us going. Your support allows us to be in The Tunnel focusing on Liam. And without your support this journey would be much, much harder. We are humbled by the outpouring of support we continue to receive and are so incredibly appreciative.

Slaying Liam's Dragons..

2009-07-31T09:30:00.005-04:00

After more than 8 hours of surgery by the talented team of Dr.'s at Memorial Sloan-Kettering Dr. LaQuaglia emerged from the OR to tell us that he has once again spared Liam from the clutches of neuroblastoma. He removed the main tumor that was near his paraspinal region (muscles surrounding and supporting spine but did not involve the spine!) as well as the various lymph nodes that were found to be neuroblaastoma positive from his abdomen leading up to his esophagus. After Dr. LaQuaglia did his part and then Dr. Waldon and her team from radiology came into the OR and administered radiation directly to the areas where Dr. L. found tumor remains as well as a wide area around the tumor bed to eradicate any proliferation. This exact type of inter-operative radiation for a child like Liam is only available at MSKCC and has been perfected over the years to provide positive results. Dr. LaQuaglia used Liams original incision so he will not have another massive scar but did need to extend it some to be able to gain access to the upper chest region to remove the lymph nodes. So you understand the magnitude of this incision, draw a line from your belly button around your side to within an inch of your backbone and you will get the idea. Liam tolerated the surgery well but due to the length of time he was under and intubated he needed to remain on the respirator and was transferred via a special Intensive Care ambulance team directly from MSKCC's Operating Room across the street to Cornell Medical Centers Pediatric Intensive Care unit at around 6:00 p.m. yesterday. he has a chest tube in his side draining fluids from his abdominal area as well as an epidermal to help manage the pain associated with the large incision.

Then began the game of finding the right combination of pain medication and sedatives to keep him comfortable and sleeping. Unfortunately this is easier said than done. Around 7:30 Liam emerged from his anesthesia and immediately attempted to pull out the respirator tube (he hates it). His heart rate went sky high and remained high for the next hour or so as we worked with the attending Dr. to get his pain and discomfort under control. He would try several more times to remove the tube. He was aware of his surroundings and nodded when Gretchen and I told him we loved him and when we asked him if he as ok. It was not until after 2:00 am that he was finally comfortable and his vitals where we would want them.

Liam woke up this morning, sat up (if you can even imagine) grabbed his respirator tube and yanked it out. This of course set off a panic in the ICU. His hands were obviously not restrained enough for Liam's determination. We warned them several times last night that he has a will like they rarely see and it takes 5 nurses to give him a shot if he decides he truly does not want it. They now know the Liam we all know and love. They opted not to put the respirator tube back in and he is now breathing on his own with supplemental oxygen. He is also not happy about the oxygen mask on his face. There is a small amount of fluid in one of his lungs that will be monitored throughout the day and hopefully will not cause any complications. He has a tough couple of days ahead and will be required to be up and walking as early as tomorrow. The hope is that he is transferred back to MSKCC late today or tomorrow morning to their step down unit (below ICU critical level care but above general in-patient level monitoring). We know most of the nurses in the unit and look forward to being under their care. The first 48 hours post such a dramatic surgery are the most critical and we have cleared about 16 so he is not out of the woods yet but being off the respirator is a step in the right direction...a step Liam chose to make on his own. Mr. Inquisitive managed to ask Gretchen various questions as to what all of the probes and wires were sticking to and coming out of his body.

I want to thank all of you for your endless support and love. We are all hopeful that this will be the round of treatment that keeps him cancer free.....it has to be. We will try and update the blog as energy and time allows since we know how important Liam is to many of you. Thank you to the dear friends who sat with us yesterday and helped us get through the grueling wait while Liam was in surgery... we love you guys and could not endure this journey without you.

Surgery Moved to Thursday Morning

2009-07-29T01:08:00.002-04:00

Liam's surgery has been moved to this Thursday morning with a start time of 8:00 am. I just remembered in my sleep deprived state that I had not yet updated the blog. Sometime today (Wednesday) we will need to tell Liam that he will be going to the operating room again and this is one of the hardest things for us to do. The pressure that is building as we inch toward Thursday is almost unbearable. We have been here before and the imagery is burned into our memories permanently. Parting with Liam as he is taken into the OR gives you an immediate emptiness I cannot describe and that I will never forget. It is a feeling I know I will feel again all too soon. An overwhelming sense of anger, frustration, fear, and sadness.

To Dr. LaQuaglia and the surgery team as well as Dr. Walden and the radiation team; please keep Liam safe and return him to us and all of those who love him free of this cancer once and for all. Please treat him and care for him as if he was your very own son....

Crawling out of our hole...

2009-07-22T15:10:00.004-04:00

First I would like to apologize for the silence Gretchen and I have observed for the past few weeks. The reality is that we have not had the strength to write what it is we are experiencing as it only makes it a reality we are not yet prepared to accept. Liam’s relapse caught us and his doctors by surprise. Something neuroblastoma is famous for and why it is such a despised and unwelcome disease. Liam was receiving 3f8 antibodies and doing so well that the thought of him relapsing now was truly not expected. Remember he is scanned every 90 days. 90 days before his last scan there was no tumor. 90 days later a tumor had formed in the rear of his chest cavity and was 2 inches in diameter. It had also spread to various lymph nodes in the area. It is proof of how unrelenting this type of cancer is and why there MUST be better therapies developed for kids like Liam. Over the past few weeks he has been through hell and back and I will spare the finer details but after a high dose round of chemo called ICE he and Gretchen spent 2 full weeks in patient due to neutropenia and a cough that he could not shake. He coughed so hard and so much that he would throw up and every muscle in his body ached from the physical exertion. The chemo knocked his immune system to zero and then some and it took weeks for it to slowly climb back to where his immune system could once again defend him from internal and external germs and bacteria. He has also lost his beautiful head of hair again. He has been recovering from his ordeal in NJ with his little sister since last Wednesday. Ella being without Mommy and her best buddy for two weeks was very hard on her as well. I tried to give her as much love and attention as I could but I am a poor replacement for Mommy and Brother. For the last week he has been playing, eating to regain the weight he lost, and enjoying his home and surroundings as any child should be during their youthful summers.

Next up is a fairly involved surgery that is currently scheduled for next Wednesday though we will know for sure today or tomorrow. The surgery will require a sizeable incision similar to the one he received during his first major operation to remove the original tumor. I was told to expect that he will be in intensive care following the surgery and on a respirator. Meaning he would go across the street to Cornell’s pediatric ICU post surgery until he is able to come off of the respirator. The surgery will be performed by the amazing Dr. Laquaglia and he will remove the new tumor as well as parts of Liam’s lymphatic system (nodes) where the cancer was also detected. The chemo he just received did its job and reduced the tumor by at least 50% so it is now smaller than a golf ball and resectable without additional chemo. During surgery he will receive inter-operative radiation in an effort to eradicate the cells that continue to develop in his abdominal area. Post surgery and recovery he will receive external radiation to the same area as well as the areas where the nodes were located. Post radiation he will receive an additional round of high does chemo and then several rounds of low does chemo and most likely additional rounds of 3f8 antibodies. Even though 3f8 has not managed to control his soft tissue relapses it has in everyone’s belief kept his bone marrow clean and his relapses treatable. The team at MSKCC is confident that Liam will be NED again soon and back on track; we too believe this to be true.

He is an amazing little boy and has taken all that has been thrown at him in perfect stride, never complaining, and always full of love and kindness. He has every right to throw things, scream, yell, cry, and to be miserable but then we would not be talking about Prince Liam.
Liam is in for a very rough couple of weeks. Our hearts ache for our precious son who deserves none of the pain and suffering he has been chosen to endure (no child does). He has had more than his fair share and what lies ahead for him over the coming month weakens my knees. I would take it all for him if it was at all possible. Take his cancer away and give it to me. I have begged God to spare Liam of any further anguish and to place it all on me to endure. It should be my fatherly right to make such a choice. As his father and his mother one of the most painful aspects of this journey for us has been the inability to protect our son from further harm. To protect him from the cancer that keeps trying to take him from us all, the toxic treatments required to keep him with us but that we know are harming him in other ways, and the uncertainty of what tomorrow holds for him. It goes against nature and all we are programmed as parents to do. We have managed to keep up a pretty good façade through most of this journey but you all must know that today we feel the pain more than ever before and why this journal has been so quiet recently. We are tired, saddened, weak, and working to muster the strength to get through the next few weeks to be strong for Liam when he will need us most. Your prayers, good thoughts, and random acts of kindness have given us added strength in the past and why I felt the need to bring everyone up to date on Liam regardless of how difficult it is to share the news above. He needs us all once again to cheer him on and to focus all of our positive energy in his direction. We will provide the exact date and time of the surgery as soon as we know. Sorry again for the silence but our armor took a serious blow this time and has taken a few weeks to recover.

Liam Returns to Battle

2009-06-15T11:48:00.003-04:00

It is with heavy hearts that we share with you the unfortunate results of Liam’s most recent scans. The results of which showed that Liam has relapsed in a new area behind his lungs, around the lymphatic system. The 3f8 treatment Liam has been so fortunate to receive does not seem to be the right therapy to keep him free of soft tissue disease. We have been fortunate not to have found disease in his bone marrow but it is a mixed blessing since bone disease is what 3f8 really excels at fighting and the treatment Liam has tolerated well. He received 7 rounds of 3f8, two being high dose, since earlier this year. Cells hiding in soft tissue require that chemo be used to kill them so Liam will start a round of high does as early as tomorrow if not later today. No amount of time can be wasted since the tumors they found were not there 90 days ago and have grown to be approximately 2” in size in a short period of time.

It angered me all weekend to know that the cells were growing and spreading while he ran around the yard, swam, rode his bike, and played with Ella as if his world was in perfect order. The feeling of being completely powerless while something is harming your child right in front of you is a feeling I cannot begin to describe.
Today Liam has an MRI to better understand where the tumors are located since one resides in the soft tissues surrounding the spinal cord. It is most likely in the tissues around the vertebras according to last week’s scans but we need to be certain.

Liam will also have a port surgically implanted back in his chest today so he can receive chemo. The surgery time is not known since he was an add on the schedule so will be squeezed in at some point. He will be really bothered by the ports return both physically and physiologically. It kills us to have to watch him endure so much. We plan to tell him that his blood “still needs more fixing” and he will need more medicine to get the job done. Liam does not know he has cancer, does not know what cancer is, and thinks he is perfectly normal. His innocence has been a major priority of ours throughout the last two and a half years. We know that this time around he will likely question the various treatments and procedures more than ever as he works to process and determine what is really going on. Anyone who knows Liam and knows him well appreciates his relentless curiosity and inquisitive nature.

We are looking in every direction to determine the next best step based on Liam’s situation. We know we must stop and shrink the tumors immediately and then remove whatever is left. Meaning, Liam will likely undergo a major surgery sometime in July. We along with Liam’s team of doctors at MSKCC, along with input from several other top neuroblastoma doctors, will then develop a new game plan to keep him clean. There are a few other options but not as many as you would think or desire. Each will likely include various combinations of chemo as well as new or experimental therapies like NK cell, ABT-751, or MIBG therapy.

We have a most unpleasant and unexpected summer ahead of us. Your support and endless cheering for Liam is what truly keeps us going. Though we are scared, broken, and tired of this journey’s seemingly endless barrage of heartache and pain, it is one we would walk a thousand times over for Liam.

I will leave you with this:
On Friday we returned to our apartment after learning of Liam’s relapse. Gretchen and I were doing our best to act as if nothing was wrong even though we were both crushed and had pretty much had the life sucked out of us. We could not appear as if anything was out of the ordinary even though we were both numb. I walked into Liam’s room with him to find the sun streaming through his bedroom window. He said “Daddy! Daddy look! It’s beautiful! Look at the sunlight” as he held up his arms and basked in it, dancing around! I could not physically respond but I doubt I will ever forget to appreciate the simplicity and beauty of late afternoon sunlight shining through a window. ..yet another lesson from our young Prince.

2009-06-15T01:49:00.002-04:00

June 14, 2009

Dear Friends of Prince Liam:

Gretchen and Larry asked me to write you all because they are polishing their armor at the moment, getting ready for battle. On late Friday they were given the news that Liam has had a relapse and will begin a course of chemotherapy treatment beginning Monday. He will also need a fairly complicated and delicate surgery in the upcoming weeks. It has come as a complete, devastating and disappointing surprise especially considering how great Liam looks and feels as everyone who attended his birthday party last weekend can attest.

She and Larry have much to do. Most importantly they must stay strong and rested and focused for Liam. So here are the things that you can do during this part of the journey. Remember that no acts of kindness are wrong-- it's just that some things are more appropriate and more helpful at times like these than others.

If the tone of this seems a little harsh, it isn't meant to be. It is just meant to give Gretchen, Larry, Ella and Liam the greatest amount of practical and helpful support at a stressful, tense and crazy time.

So here goes:

1) NO crying visitors. Only stiff upper lips. They'd love visitors, but only if you come with the intent of showering Liam with joy, either by bringing a craft project to do or a book to read.

2) No chair sitters. They need you if you are ready to run and explore and engage Liam in order to give them a break for a few minutes. For Ella’s friends’ mommies and daddies, Ella cannot be forgotten in this crazy time. She loves playdates but there are times they'll need to cautious of her exposure to others because of the risk it poses to Liam. Please have no one with a cough, cold, sniffle or anyone less than 100% healthy around Ella.

3) Don't ask questions about Liam when he or Ella are around. In fact, please don't ask a lot of questions in general right now about the details or the disease or outcomes. They don't have the answers and answering them is exhausting.

4) No one is allowed in the hospital room who doesn't believe that there is any other outcome than to battle this cancer beast back once again.

5) If you're not a local friend, you can hold a bake sale, buy some cookies (www.cookiesforkidscancer.org), do something to support their efforts to make more treatment options available for this insidious disease.

6) If you're not local and even if you are.... send a handmade card or music card to Liam and one to Ella - they love them.

7) Don't call. It is one more thing that will make them feel like failures as there will not be enough time in the day to take care of Liam and Ella, to calm them, to talk to doctors and nurses, to wage the battle and to rest-- even though that last part is next to impossible.

8) Do send an e-mail instead. Don't expect a reply but know they appreciate your note.

9) Don't ask Liam how he feels or Ella how her brother feels. Liam looks and feels great. When people ask him how he feels, it confuses him because he doesn't understand why people are acting like there's something wrong with him.

10) Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And know that we love you for your friendship and support....

Lee Woodruff who shares a birthday with Liam

Jet Packs and Grass Stains

2009-05-03T04:03:00.005-04:00

4/09 - Yes, I DO still fit in my dump truck!

4/09 - Glorious Hair

May 3 – 10 Days until Liam’s 5th Birthday

Jet Packs and Grass Stains

There’s a post at the end of this entry that was written on the two-year anniversary of Liam’s diagnosis. I was angry, grateful, defeated, hopeful, sad but trying to remain happy when I wrote it. I was going to post it, and then another child lost their battle which sent me reeling in a sea of conflicting emotions. I froze. And then another child lost their battle and I remained frozen to write but not to love Liam and Ella like there is no tomorrow. It is a powerful and poignant gift to be taught the fragility of life. It is also a suffocating and smothering burden at times to carry. Yes, Liam will walk across a brilliant green lawn to pick up his university diploma and look back over his shoulder once he has it in hand with a twinkle in his eye saying, “what’s the big deal?”, but the road it’s going to take to get him to that milestone is going to be one without a map to guide us. I’ve always felt more comfortable having a map for guidance, but I’ve also been pretty good relying on instinct to guide me. I like going with the, “I feel like if we go this way, we’ll get there” guidance system. It worked when I was studying in Europe, why can’t it work in this situation?

I found my writing voice with the help of a steady stream of postcards from London that have never ceased their regular appearance in our mailbox in two years; the encouragement of friends who gently prodded me along; the weekly arrival of proceeds from Cookies for Kids’ Cancer bake sales and, most of all, Liam’s good health which proved to be the salve I needed to cover those wounds.

Without further adieu, Liam is good. He’s so good in so many ways. And every day we try to drink it all in, savor the good times and believe they will go on and on and on while also hoping that the advancements in treatment that are being worked on will become available as quickly as possible for Liam and all of his friends.

He’s growing up in so many ways. He’s practicing writing letters. He's interested in learning how to spell and wants to learn how to read “in two weeks.” He made the very astute observation that he likes a pacifier for the same reason other people like cigarettes. He just does. But after two years of relying and depending on his pacie to comfort him during cancer treatment, he has retired his beloved friend because it was making him “say words funny.” He did make the condition that he can have his pacie during owie medicine week because “it helps me.” He also announced he wanted to go to “word class” to learn how to say words the right way. (We’ve added a weekly speech therapy class to his schedule which he loves.) (The pacifier does come comes out of hiding during hospital weeks, but that’s just fine with me.) He switched from kid’s toothpaste to the toothpaste Daddy uses, because he likes how it tastes “spicy.” He can watch a movie to the end and be completely engaged. (Ella tends to get bored and wants to move on to something else.) He wants to know about everything from dinosaurs and the life cycle of toad eggs, to plumbing and how gasoline makes engines go. Space and the solar system is a hot topic for him and we have watched countless videos showing sun flares and sun spots. We spend a lot of time looking up videos on YouTube that will explain the latest fascination. A jet pack constructed using two empty liter bottles, duct tape, cotton balls and glitter that was a gift from twins Robbie and Stevie have become a part of his daily uniform. He wears his jet pack to school, to the grocery store, running around the yard, and is convinced it makes him run faster. For months the jet pack went unused as Liam just didn’t have the energy to think about being an astronaut. But now he wears it all day to help him get from point A to B faster and hangs it on his bed post at night to keep it close by. If you ask Ella what she’s going to be when she grows up, she very assuredly responds, “I’m going to be a princess and Liam’s going to be a space guy.” Last weekend he spent time running up and then down a hill of bright green spring grass over and over and over. He would run down as fast as his legs could carry him while squealing in glorious delight and fall into the grass. Again and again he made the trek up the hill and the run down. When he eventually tired, he was surprised to find his knees were stained a bright green color. As he contemplated the green color on his knees, I wanted to fall on my knees in grateful thanks that he could experience something so fundamental.

What’s next?
Since the last update, Liam has completed two more rounds of antibodies which brings him up to six including two at a dose four times the amount of “regular” dose. The first four rounds are administered at three week intervals which are more like two and a half when you take into account that injections start the Wednesday before antibodies begin. The scheduled has now changed to every six to eight weeks which represents a huge turning point for us. It is the first time the leash with the hospital has had this much slack since July. He also has successfully navigated another round of scans and endured two bone marrow procedures with good results. (There were a few knee-weakening moments during his most recent MIBG scan which left me with the spine of a jellyfish while waiting for the results, but all turned out well.) He is on round four of Accutane with, thankfully, minimal side effects. Accutane is given two-weeks on and two-weeks off for a total of six cycles. (There’s a small book of warnings about the potential scary side effects that come with taking Accutane, along with very official paperwork including a registration card with the Federal government.) We’ve had worrisome moments along the way, some of which rocked my foundation enough that I couldn't write about them and instead had to reflect on what happened and come to peace with. The one lesson I am constantly reminded of is trust your instincts. If you feel something isn't right, it probably isn't. His next round of antibodies is scheduled for 5/18 and his three-month scans June 11 and 12. As hard as antibody treatment is, we remain faithful it is the right path. We’re squeezing in a vacation out of the country to an island far away from Memorial Sloan-Kettering before his next round of scans.

Liam and Ella Stories:

I love you
We spend a lot of time saying the three glorious words, “I love you” and extolling how much love we have for each other. With Liam’s solar system fascination comes a new way to measure love. Liam knows the planets in the solar system and their position and declares that he loves us “to Pluto and Back and Pluto and Back and Pluto and Back and Pluto and Back and Pluto and Back.” We always tell each other we love each other before we leave the house and have lots of group hugs. When Liam or Ella is going somewhere without the other, they seek each other to give each other a heartfelt hug and kiss goodbye with the assurance that they’ll be together again soon. They hug and kiss each other before going to bed. They comfort each other and say unprompted, “I love yous” to each other throughout the day. They are so close both emotionally and physically that they are often asked if they are twins. They decided they like the idea of being twins and now tell anyone who asks that yes, they are twins.

Snuggle Bunny
Larry was the one to coin the phrase snuggling like snuggle bunnies with the kids as he curled them into him to offer warmth and comfort. We’ve spent a lot of time snuggling with both children – Liam to sooth him while dealing with pain and discomfort and Ella for reassurance and extra attention during difficult times. There’s no greater joy than feeling a child nuzzled next to you. Liam and Ella have now adopted the phrase. Liam frequently asks Daddy to “snuggle with him like a snuggle bunny” or says, “Daddy – Let’s be snuggle bunnies” when he’s looking for some quiet time. Liam and Ella have started sleeping together on weekends in Liam’s “big bed.” As they climb into bed together, one of them will say to the other, “Do you want to snuggle like snuggle bunnies?”

How Old Are You?
I can’t count the number of times that Liam or Ella says something that makes me either laugh out loud or smile an incredulous smile of amazement. It’s a daily occurrence. Liam routinely tells cab drivers to have a nice day and asks when he’s going to see them again with an innocence and earnestness that makes you want to scoop him up and hug and kiss him. When a friend and her family were recently leaving after an afternoon visit, Liam turned and said, “They’re really nice people. That was really nice of them to come visit us. I hope they come back again soon.” As Ella and I were walking, she turned to me and said, “Mommy – Wasn’t it hilarious when we were in Disney?” She’s three. When did she learn the word “hilarious?” One of Liam’s favorite words is beautiful from declaring it’s a beautiful day, a beautiful grilled cheese, beautiful flowers or beautiful scene in a movie.

Ned or NED?
NED is what every parent of a child with cancer or adult cancer patient wants to achieve. The acronym means, “No Evidence of Disease.” There are some parents who never hear those words and others who have a very, very hard road trying to attain the status. Cancer is always on my mind. It’s always there but I try to act as “normal” as possible. A few weeks ago as we were returning from New Jersey to New York, I saw a new billboard that jolted me. In huge letter the billboard read NED with a phone number after it. Why in the world would a cancer term I never heard of until entering this stranger alter-universe be on a billboard? Why? NED? NED! And what was the phone number to…a cancer center? And then I noticed underneath the word NED , it said “Gutter Cleaner.” Ned is a gutter cleaner who is advertising his services.

Liam”isms”
- “Mommy – I’m very serious about science, blood and electricity. Very serious.”
- “I think I’m getting smarter because my brain is getting bigger.”

Marathon Man
Liam has a jersey and medal from the 2008 NYC Marathon. They were given to him by his friend and supporter Marci who has run in the past two NYC Marathons as a member of Fred’s Team. The money raised by Fred’s Team goes directly to the pediatric floor at Memorial Sloan-Kettering with a chunk of it directed to the costs associated with manufacturing 3F8 antibodies. Marci is an “after cancer” friend who has been so gracious and unwavering in her commitment, even for a family she doesn’t know outside of the world of cancer. Lately Liam has taken to running around with the purple and orange Fred’s team jersey on, with the medal around his neck, and his head popping out of the arm hole of a t-shirt to act like he has long hair flowing behind him. He runs from one end of the apartment to the other yelling, “I’m a winner!! I’m a winner!!” with Ella faithfully following behind.

Who Let the Dogs Out?
Last Valentine’s Day Liam received more than 10,000 Valentine’s Cards from all over the country thanks to the heroic efforts of one of our many North Carolina friends, Julie Yenichek. We saved every Valentine card and quite often Liam and Ella go through the boxes looking at the cards and asking who each one is from. They, of course, assume we know every person who sent cards. All we need to know is that each person sending cards was doing it in support of Liam and our family, something I will be eternally grateful. One of the cards played music, the song “Who Let the Dogs Out.” That song has become a favorite. It’s on my iPod and played in the car, on the computer and, of course, the original card. The kids sing the chorus over and over again and both have become quite proficient at mimicking the singer. To whoever sent that card, you have no idea how much joy that card has brought us. We still have it, more than a year later, and it still makes us all laugh. Thank you to the person who sent that card and to everyone who sent Valentine’s cards. Even today, they still bring us so much joy.

And here is the original post I wrote on the 2nd anniversary of Liam’s diagnosis.

State of the Union - 24 months and more than 200 injections later.
February 27th is the day we found out Liam had a tumor in his belly. No one said he had cancer on that day. It was a Monday. We stayed in the hospital in New Jersey that night; the very hospital where he was born 2 years and 9 months earlier. I still vividly remember the day of his birth, looking at him for the very first time and thinking he was just perfect and realizing that in an instant my life and my heart would never be the same. I still think he is just perfect. The day after we learned Liam had a large tumor in his belly was the first day the word oncologist and cancer entered our world. It was the day we knew we were in a bad place with our baby boy. It was the day I crumbled to the floor when I was told the news that he had the worst of the two cancers they thought it could be and, as icing on the cake, it was stage IV which means it was the absolute worst it could be. Liam was still unconscious from anesthesia, resting on a CT scan bed next to me. If he had been awake, I wouldn’t have collapsed. The only reason I did was because he couldn’t see me. I’ve tried so very, very hard to never let Liam see fear in all of our time at the hospital, but I haven’t always been successful. There were two times he has seen it and both times after he asks a million questions about why I was upset. I’ve tried so very, very hard to approach this as just something we have to do and nothing unusual. We are so fortunate to live close by making it fairly easy to transition from one home to two. Ella was too young to realize anything was different and Liam understood the explanation that Daddy and Mommy wanted to have him and Ella closer to where we work. “Curious George has two homes, a city home and a country home, and so do we.” He accepted it and we moved to the city and moved on.
Two years later we’re still in a very precarious state but are still living. We’ve learned to deal with things we never thought we could. I have now learned how to give injections and have pierced my son’s skin at least 182 times while Larry plays the heavy handler to keep him still. Larry learned how to do dressing changes in a sterile environment while I held, soothed and restrained a very upset little boy. And together we have learned to take nothing for granted and never get too comfortable with status quo.
We’ve made amazing new friends. We’ve lost touch with others. We’ve been buoyed by the support of so many, from around the world. We’ve had victories. We’ve had setbacks. But we have never lost faith. We get scared more easily than we did before the spot was found in July, but we try to keep that fear contained. It’s the genie in the bottle we don’t like to let out. We have learned to love as if there is no tomorrow and for that, we hope our children have benefitted. They tell us and each other, “I love you,” more times than we can count a day. We also have had hard times. A couple adjusting to this new world certainly has its fair share of challenges. Men and women are different in the way they process information and for many, many months Larry and I have not been able to talk directly to each other about Liam’s diagnosis. It’s just too painful. We talk around it. We talk about things related to it. We talk about safe topics, but we don’t talk about Liam. We talk about cancer every day. But we generally don’t talk about it in relationship to Liam. The way I deal with it is the way I have to deal with it. And the way Larry deals with it is the way he has to deal with it. We respect each other enough to not judge how each has chosen to handle. What we do share and are both completely committed to is loving our children with our hearts and souls and doing everything in our power to change not only Liam’s statistics but also every child dealing with a devastating diagnosis of cancer and, in the process, hopefully preventing more families from having to hear not only the awful words, “Your child has cancer” but even worse, “there is no cure and virtually no funding to support research to find a cure.”
We have divided responsibilities but not without it taking a toll. Ella and her daddy have a special relationship that, I suspect, is more than the classic Daddy/Daughter relationship. Liam and I have a unique relationship that doesn’t require words since each instinctively knows how the other feels. As the one who has done the bulk of the hospital time, there are many times I’ve felt like either Sigourney Weaver in “Alien” or the mom character in “The Terminator” movies doing battle with the enemy to protect my child from a morphing alien that just keeps coming back no matter what we do to keep it away. We have leaned heavily on others and have been grateful for the support from so many. Battling cancer is an isolating, all-encompassing and exhausting job. We try to return the overwhelming amount of goodwill by doing our best to keep Liam healthy and as a couple stay strong. We have learned to batten down the hatches and focus on what is truly important, protecting Liam, something that hasn’t come without the cost of friendships. The team we all play on is Team Liam. Even Ella has learned to be more compassionate and sensitive than any 3-year old should be because of Liam’s situation. We’re still as much in the battle today as we were 24 months ago which, quite frankly, is draining. And we have more than 4 ½ years ahead of us of sitting on pins and needles and watching everything. Everything. Right now the pins and needles are in a heightened sense of awareness as scans approach and Liam has been displaying a variety of seemingly innocuous symptoms but collectively amount to worry. Are these symptoms nothing? Are they related to Accutane? Is it something? Is it nothing? It is exhausting and I bet it’s also exhausting to be a supporter of us. This is a long battle and one that would be easy to tire of.
The reality is we now know of more children who have not made it than who have, something that unfortunately reflects the statistics. I guess numbers really don’t lie. We take each loss very personally whether it’s a child we knew or only knew of. It sets us back. We get angry. We get sad. We get scared. The searing pain of the loss of a child is the same anywhere in the world. Recently a little girl in China lost her battle against neuroblastoma. She was in the midst of receiving the same type of antibodies Liam receives at a hospital in Hong Kong. It is the only other institution other than Memorial Sloan-Kettering where 3F8 antibodies are available, something that will soon be changing. The words the mother wrote about the loss of her sweet baby girl seared a new scar on my heart. This is what we’re fighting for…to help impact change that will be felt around the world. It is our responsibility to do whatever we can, because we can. And I believe in my heart that we will. We already are. Every person who reads this journey knows at least 50 people who also love children and can pass the word along. And then those people can pass the message along to another 50 people. And the message of “Yes We Can” will spread the farthest reaches, even those beyond our wildest expectations. What is happening to my child could be happening to your child or any child. I look at the children in Liam’s sweet and innocent class and am sometimes overcome with emotion seeing how normal he looks. You’d never know what he has been through. Liam didn’t get cancer for any reason other than an awful shuffle of the cards of life. He didn’t deserve it. No child does. But to change it we have to work together. It’s literally up to us to say enough is enough.

My birthday wish this past August was for 50 bake sales to be registered. It didn’t happen. We were close, but we didn’t reach the number. Mother’s Day and Liam’s 5th birthday are coming up. For Mother’s Day as my gift in honor of my son who is the reason I am a mommy and his sister who loves him more than anything, I have a request for those who read our journey. I know there are 50 people who can help us reach the goal of having 50 bake sales registered by Mother’s Day. There is nothing that would make my heart happier and my soul affirmation. Now, with that said, I always hesitate mentioning a hope like this because I don’t want to be disappointed. But then I remind myself that it doesn’t really matter if something makes me feel uncomfortable…cancer is uncomfortable. There’s nothing comfortable about it. And who am I to worry about protecting my own feelings? This isn’t about me or my feelings…this is about Liam and his fellow warriors and the need to believe we did everything we can for him and for every child. After all, doesn’t every child deserve a fighting chance?

2009-02-22T18:49:00.002-05:00

Early February 2009

Stories and Vignettes from Round 2 of Regular Dose of Antibodies.

Monday Monday.
Monday, February 2nd was tough. Mondays are always tough in a week of antibodies. The song, “Tell Me Why I Don’t Like Mondays,” plays on a continuous loop in my head as I try to reason, explain, cajole, plead and finally grab Liam to restrain him for a finger stick. It really is no fun. He curls his fingers into the palm of his hand with such strength that it takes two adults to uncurl one finger. He cries, screams, begs me not to do it, protests, yells “no…no…no…no…no” over and over again and kicks with the strength of a donkey. I feel awful restraining him. I feel like I’m betraying his trust and hope and pray he’ll forgive me. And then it’s over and he bounces back to being Liam. Unfortunately I don’t bounce back as quickly but try to shake off the experience since he apparently already has.

The insertion of the peripheral line in a vein in his arm was equally unpleasant. He was nervous about it, understandably so, and kept asking seemingly random questions that were not at all random about the process for about 24 hours prior to the actual deed. “How big is the needle?” “Is it going to hurt?” “How does the little tubie stay in?” “How does the needle come out?” And when we finally had a bed, in one of the shared room, the real assault began. First the shot. OK, done. Then, the peripheral line. It’s not that either Liam (or I) would prefer to still have a medical port and the stress associated with a temperature over 100.4, but to a 4 ½ year old the concept of a needle piercing a vein is tough. We had a different nurse than we normally do which added to his discomfort. We were in a different room than normal which also got him off kilter. (“Mommy – Why are we in this room?” “Mommy – When are we going to go to our room?”) This time it took three adults to restrain him in order to get the task completed. I have never seen Liam like this. He literally was hysterical with fear. And then unfortunately our poor nurse hit a valve when inserting the needle and had to abandon her attempt to access that vein. Out came the needle. We had to do it all over again with a fresh arm. As we were trying to keep him still, he was trying to do anything he could to stop the process. I heard the nurse calmly but firmly saying, “Liam – You can’t bite. You can scream and yell, but you can’t bite.” He hadn’t bitten her…yet…but he was a cornered animal looking for any escape. OK. Did I mention how much I hate Mondays? After it was finally over, he almost immediately fell asleep in my arms. And the final part of the day’s assault…the administering of antibodies. Now, just to make sure I am clear, I am not complaining about antibodies….not in the least. I am grateful for the opportunity to receive them. I can justify the pain knowing what it can and hopefully is doing. But I’d be lying if I said a piece of my heart isn’t ost every time I go through the experience of hearing my sweet, sweet guy cry out in agonizing pain. But would he have pain this round, the tell tale sign that the treatment is working. This is the part of the twisted story where you nervously and hopefully wait for the pain. Come on pain…show your face. Wait. No. What am I saying? I’m wishing pain on my child? But as crazy as it sounds, that’s exactly what I’m doing. And then it started. And everything was good. Sort of.

When he was in recovery mode, he called out to Cat, his gal pal nurse who has spent more time with us during antibodies including the very first time we went through the experience. Cat is the nurse he has shared a cab with which makes her extra special in Liam’s mind. Cat is the one whose name I urgently called out over and over when Liam became unresponsive back in the fall which makes her extra for me too . With slurred speech and droopy eyes, Liam gingerly called out for her. “Caaaaaaaaaaaaaat. I want you to ride in the cab with us.” And Cat promised Liam she would. After Liam had recovered enough to be able to moved to lay down in his stroller, he insisted on giving out the special Disney character pens to his doctors and nurses and others who play pivotal roles in his life that came back from our recent pilgrimage to the Magic Kingdom. We tried to convince him to do it another day, but he insisted on doing it right then and there. Cat pushed the stroller. I carried the bags that come along with Liam when he’s at the hospital. Liam clutched a plastic bag filled with a collection of Mickey, Minnie, Tinkerbell, Donald, Chip and Dale, Goofy and Pluto pens. Liam would reach into the bag and through blurry eyes determine which character should be matched with which person who he thinks of as friends but whom are part of a highly-skilled medical team working very hard on his behalf. I’m not sure if it was a coincidence or planned that Goofy was deemed a good match for Dr. Kushner and Linda received Chip and Dale which, if said fast, sounds like the famous and talented male dancers.

When we finally left the hospital, Liam was snuggled in his stroller wrapped in blankets and dozing in a narcotic haze. He didn’t appreciate the blast of cold air that greeted us. And removing him from his stroller cocoon was not easy. When the cab pulled up to the train station to drop off Cat, she quietly exited to let him continue sleeping. He, though, was conscious enough to know she was leaving. “Caaaat….wait…” His voice sounded so small and weak. Cat came back. “You forgot to give me a kiss and a hug.” She gave him a kiss. “Caaat. A hug too.” And after her very long Monday, she leaned down to give Liam a very tender hug amidst all his owies. We said our good byes again and she was on the curb when he urgently called out to her again. “Caaat. Caaat. Wait. I have to ask you something.” Once again, she came back and leaned next to him. “Caaat. Um…Um…Um….Caat. What kind of soap do you use in the shower?” “What kind of soap do I use? Ah…Let me think…cucumber melon. It’s green.” And with that information, Liam finally allowed Cat to depart.

The next day when we arrived, Cat presented Liam with a bottle of cucumber melon soap. I’m taking that bottle of soap and packing it in Liam’s bag to use in the shower at the Y after his weekly swimming lessons.

Conversation between Liam and Ella overheard on Thursday morning, February 5th around 10:30 a.m. on day four of round 2 of regular dose antibodies.

Liam: “Ella, when I come home from the hospital I’m going to have owies and I need you to not make any noise. So you can’t drop the blocks when you’re building a horse barn with Daddy like you did last night. I don’t like that noise. It’s not that I don’t love you, I just have owies. But I only have one more day of owies after today.”

Ella: “OK Liam. I know Liam.”

NASCAR – Staying in the Race
At some point during the week, I had an epiphany that the life of a pediatric cancer patient is similar to a NASCAR car. Let me preface this by saying that I don’t know too much about NASCAR, but I do recognize a few drivers and have always been impressed by the sense of community in the NASCAR world. My impression of NASCAR cars is that during a race, pit crews do whatever they can to get a race car back onto the race track, even if the solutions are slightly unorthodox. It’s all about staying in the race, even if driving under challenging conditions. When you look around at kids in various states of treatment, some with hair but most without, some able to walk and some not, some looking present and accounted for with others looking far off and distant, some zipping around like there are no issues with others being a bit more tentative, I was struck with the feeling of being in the middle of a NASCAR race. You hear parents talking about treatment options and plans like they’re no big deal. “Yeah, we’re going to do another round of high-dose chemo,” or “We’ll do 20 more hits of radiation to the tumor bed,” or “We’ll be getting an injection of radioactive isotopes that will attach directly to cancer cells and I can’t touch or be near my child for a week until he isn’t radioactive.” In our world, a treatment option is better than no option, but oh how unbelievably abnormal it all is. Fix ‘em up and get ‘em back in. It’s just crazy.

A short Liamism
(Liam to Grandpa Rich in Michigan following surgery to repair a shoulder injury.)

“Grandpa, why are you getting old?”

Liam and Barack
Liam is making a movie. We actually have several takes of it and if I could figure out how to get the movie downloaded from my phone, I’d be happy to show it. He heard that Barack Obama smokes and is quite disturbed by it. His concern is not that Barack will get cancer, Liam doesn’t know the word cancer or what it means, but that Barack’s brain will get hurt from smoking which is what he saw in a commercial. He decided, on his own, to make a movie for Barack to tell him to stop smoking and decided the best place to shoot the movie would be at “his” hospital. Of course the irony of a 4 ½ year old cancer patient who doesn’t know he’s a cancer patient or, for that matter, even a patient making a movie about why smoking is bad from a hospital that only treats cancer is a little overwhelming, but that’s another story. In the movie, Liam emphatically tells Barack that smoking is bad, really bad, and if he doesn’t stop he’ll have to go to a hospital. And then, because he’s 4 ½ and more interested in playing, closes his movie by asking Barack to come over to his house to play. Oh, and then snorts like a pig to close the movie.

A new love: Wall-e
The new favorite movie in our house is Wall-e. He has watched the move so many times we can’t count and asked so many questions about recycling and space travel that we also can’t count. He loves Wall-e and turns toys in his collection that make noises that sound like Wall-e into Wall-e. One of his favorite parts about the movie is the theme song by Peter Gabriel. He loves the song, so much so that we downloaded it for him to listen to over and over. He wanted to know the words, so we looked them up so that he could learn them. When we’re in the car, he sings along to the song in his sweet, squeaky voice. If you have a chance, listen to the song and hear Liam’s little voice singing along emphatically singing, “We’re coming down to the ground!”

Cinderella
One of the activities we took part in during our storming of Walt Disney World was breakfast with the princesses. We arrived at Cinderella’s Castle and waited in line with lots of little princes and princesses, but mainly princesses, waiting their turn to greet Cinderella. We’re not big on the princess circuit yet. I couldn’t even identify Belle or Princess Jasmine so the whole concept of meeting the princesses was interesting but certainly didn’t have my kiddies in the frenzy of excitement that it did with other children decked out in their princess outfits. When our turn came, the red velvet rope let us into the special area with Cinderella. Ella was completely shy but Liam stepped right up to say hello. He was quite taken with Cinderella’s beautiful blue dress and perfectly coiffed hair complete with princess headband. He cocked his head to the side, put a hand on his hip and innocently said to Cinderella, “Ah, we’re going upstairs for breakfast…would you like to join us?” Cinderella clearly was taken aback. She laughed and explained in her princess voice that she was very busy greeting other knights and princesses but would be upstairs later and be happy to stop by to see him. And then, being Liam, he paused, furrowed his brow, put his hand on his hip, cocked his head and said, “We have a really pretty hotel room. Would you like to come over and play?” Cinderella was quite gracious as she tried to explain that she had previous engagements. I was quite surprised, impressed and proud. And then, snap, the picture was taken of all of us surrounding Cinderella. During the rest of our trip to Disney Liam would declare whenever he saw Cinderella, “there’s my friend!” He also hijacked all of the Cinderella dolls in the collections of princesses Ella collected during our trip. Since we’ve returned from Disney, there is a Cinderella positioned on the dresser next to his bed in the city home (what I think of as the “hospital home”) and on the top of the headboard in the country home (the home I think of as home). Cinderella, you might have made the biggest mistake in your life. I think you should have taken Liam up on his offer to come over and play.

Names.
There are times I get stuck in a freeze frame state. My body is functioning and it looks like it’s moving, but my heart is frozen. Someone will get tough news, and I freeze as I take on that family’s weight. A child will lose their battle and I freeze with a noose wrapped around my heart. I go to this place where I feel vacant and empty and the only time I really feel like I can snap out of it is when I’m with Liam and Ella. The thing I didn’t think was possible just recently happened. I now know so many children who have lost their cancer battles that names are being repeated. There are two Jessies. Two. Two Jessies who should still be here; One who was on the cusp of spreading her wings and starting her senior year of high school, and another who was in kindergarten getting ready to embark on her school career. One Jessie was Liam’s first and much older girlfriend and the other a roommate with us during one of our hospital stays. There are so, so many who share names who are in treatment, something I didn’t think possible. And the faces of those children who have been lost are permanently etched in my memory bank. I have snapshots of children burned into my memory bank. A smile seen in the playroom while tackling a Scooby Doo video game. A grimace during a painful post-operative walking session to get a body moving again. A chorus of happy birthday for a 5th birthday. (I can’t sing happy birthday without welling up with tears.) Those names and faces give me inspiration. They’re also incredibly painful. There are two Jacks who are back in the thick of the battle, both for a second time. Those Jacks and their families are with me all the time. There were two Zachary’s but one lost his battle this past fall. The names go on and on and sometimes it just gets so overwhelming. No one said life was fair and I’m not feeling sorry for myself, but come on powers that be…can we give kids a break? Seriously…let’s let kids be kids and save the crappy stuff for adults.

2009-02-02T11:49:00.002-05:00

"Just be.”

Without further adieu, we’re good. We’re savoring every smile, every romp in the snow, every run down the hill in the sled, every discovery, every funny line, every observation, every milestone, and every memory we can squeeze out of a gloriously ordinary day. We love the appearance of ordinary. It’s nothing less than glorious. We love blending in and Liam’s full head of hair certainly helps make that possible. We love Liam and Ella being on equal ground with Liam resuming the role of dominant older brother vs. Ella needing to tip toe around him and be the nurturing caregiver. We spend a lot of time showering our two pumpkins with an outpouring of demonstrative love and, at times, have carefully carried sleeping children from their beds to our bed just so that we can be close to them. Liam asks every night for us to snuggle with him like a bunny and we are more than happy to oblige. The past ten weeks haven’t been without the medical world crashing in on our effort to just be. The weekend before Thanksgiving and a week after a rough round of antibodies, we were back in Urgent Care with a temperature. Ella had an ear infection earlier in the week which included a fever, so we chalked it up a sisterly sharing of germs. But a fever in a child with a medical port is not something to take lightly so on a Saturday night, the evening of Fireman Tommy’s Cookies for Kids’ Cancer Pub Crawl (who said you have to bake cookies to support Cookies for Kids’ Cancer?), we were rushing back to New York City from our “country home.” It was a long night. We were finally discharged around 2:30 a.m. to go back to the apartment and meet up with Daddy and Ella. Even in the wee hours of the morning, Liam welcomed the blast of cold air on his face as the double glass doors opened and proclaimed how happy he was to be leaving the hospital. “Good Bye Hospital! See ya!! We’re going home!!” Hearing his relief made me realize just what a good sport he is when he’s there and how much he really doesn’t want to be there. When we finally found a cab, always challenging in a residential area at 2:30 a.m. in an area with few bars, Liam was making plans for Sunday. He was still sound asleep in our bed when the phone rang around 10 a.m. It was a nervous-sounding resident trying her best to be authoritative by telling me we needed to return to the hospital immediately to be admitted and start a course of IV antibiotics. Once again one of his blood cultures tested positive for bacteria. It was the third positive culture since August and once again, it was the same type of bacteria that had been previously explained away as rogue positives from contamination or other reasons. No. No. No. This isn’t what we wanted to hear. Was this another contamination issue? Could it be a false positive? He was resting comfortably in bed with no fever and hadn’t had one except for the original temperature that brought us to the hospital. Did he really, really need to be admitted? Couldn’t we just watch him closely? Could we do IV antibiotics at home? How could I crush his spirit again by telling him we had to go back? No. no. no. no. no. We quickly found a friend Ella could spend time with and made arrangements for her to be picked up and loved. And then with heavy hearts but with a light tone of voice, explained to Liam we needed to go back to the hospital. He wasn’t happy but he understood. And with the added bonus of having Daddy along for the trip, we returned to Urgent Care with the condition that we were going to have a consult with infectious disease first before being admitted. It’s always a fine line of not wanting to be a “difficult” family but wanting to protect your child’s spirit by doing everything possible to avoid a hospital stay. It was a long day…a nine-hour odyssey in a small room in Urgent Care. We met with the head of infectious disease for Memorial Sloan-Kettering, an obviously brilliant man who wore glasses decorated with rhinestones on the wings and who drew on the sheets of the bed to illustrate his theory as to what was going on with Liam’s no symptoms but successive positive cultures. (We’ve since been trying to explain to Liam that he can’t draw on his sheets even if the doctor did.) In the face of three positive cultures and a desire to not constantly look at a thermometer as a bad thing, the decision was made to remove his medical port which seemed to have some bacteria hanging out in the “sludge” that collects in ports. It was now after 7 p.m. and in order to be put on the emergency surgery schedule, we needed to be admitted and hope we could get on the schedule as an emergency add on. Damn. Daddy left to retrieve Ella who had been with a preschool friend the entire day and made herself so comfortable that she took a nap on Valentina’s mommy’s chest. We finally got to a room, in isolation because we had his nose swabbed for RSV just as a precaution, around 9 p.m. Liam hadn’t had a temperature in over 24 hours. He finally fell asleep around 11 p.m. after proclaiming he had had a long day. And then, before I could even spend time thinking about the decision that was made, in came Dr. Kayton bright and early on Monday morning to take Liam to the procedure room to remove his port. I carried Liam down the hall of the inpatient side and crossed the hallway to the out patient side of the hospital, past the cubby-size waiting area where nervous parents hold vigils, to the room he is familiar with as the one where “blood” is taken from his pelvis. (We haven’t explained that they’re actually taking bone marrow…we haven’t felt like it was something he really needed to know so we have explained it as taking blood, something he is familiar with.) And then just as we were entering the room, I quickly scanned the landscape to see a large tray of surgical tools next to the stretcher. I kept Liam’s head tucked next to my head so he couldn’t see in the room. “Dr. Kayton – Could you please cover those up?” There are certain things Liam just doesn’t need to see yet. And yet again, Liam and I assumed our familiar role of me holding him close to my chest as the white medicine he has such an affinity for enters his system, he quivers and shakes, and falls into a drug-induced sleep. I hate laying his body down on the procedure room table. I hate leaving him. I just hate it. But I did. I kissed him on both cheeks and his forehead, told him how very much I loved him, and left him to the expert hands. As I was leaving, Dr. Kayton said that they were going to be taking bone marrow too…per Dr. Kushner. Oh – OK. Sure. No problem. Bone marrow and bone marrow aspirates. The good news was we wouldn’t need to come back in a few weeks for more anesthesia. And then I waited, along with nervous parents and children waiting their turn to go to the procedure room. It’s a hard wait…you can almost smell the nervous energy. You can’t read. You can’t focus. No song sounds right to listen to. You just wait. He came out of anesthesia and promptly threw an anesthesia-amplified fit when he realized there were bandages on his pelvis. He hates the compression bandages used to stop the bleeding after a core sample of bone and bone marrow are taken from four sites in his pelvis. Unlike the early days when he would leave the bandages on for weeks, he now insists on getting them off as soon as possible. He cried and cried and attempted to pull them off with clumsy arms that weren’t quite working right from the white medicine. I tried and tried to comfort him and explain why they needed to stay on just a little while. He compromised by falling asleep on me and I carried him back to the hospital room and waited for him to recover so that we could leave. He woke up, declared himself well enough to leave, and we started to discharge process. He wasn’t happy to discover the peripheral IV in his arm which was put in under anesthesia. He was even less happy to hear it would need to be removed before we could leave. It took countless packets of adhesive remover to loosen the bandage securing the IV in place in the crux of his arm. When it was finally loose, he very nervously and cautiously removed it and was delighted it didn’t hurt. After the tube was out, he examined it, played with it, commented on the small size and no needle, and generally was fascinated.
e returned to our home in the country on Monday night to recover, think about the significance of Thanksgiving and resume just being. It was a glorious week of being together and on Thanksgiving, we gathered at the dining room table which, to Liam and Ella’s delight, was festively decorated with twinkling turkey votives. Liam, true to picky food eating preference, ate chicken nuggets while we all ate a Thanksgiving feast. Last year on Thanksgiving, both kids were asleep when we finally sat down to eat. And as soon as we said grace, Larry and I burst into spontaneous tears. This year Liam and Ella were with us at the table and with Grandma’s help, we enjoyed a meal together for which we were very thankful.
And then as soon as Thanksgiving was over, the 2nd annual cookie drive commenced.

The cookie drive is all encompassing and every dozen cookies sent as a gift equals hope. We pressured ourselves to make this year’s sale more successful than last year’s. It had to be. We have a disease to do battle with. And knowing how much good last year’s cookie sale did, we had to make this year’s sale more successful. Every night and weekend was spent answering consumer questions and every hour we weren’t at work was dedicated to cookie work. At one point during the cookie craziness, we realized that Ella had learned how to say, “Cookies for Kids’ Cancer.” Mid-way through the cookie drive, we had two marathon baking sessions at a cooking school in New York City to bake 13,000 cookies representing the number of children diagnosed with cancer each year. The cookies, which were packaged in gift boxes, were sent with notes of love to families staying at Ronald McDonald Houses across the country as a showing of support. The volunteers came from all over like Emily who flew from North Carolina to be with us and Katie and her family who drove several hours from Pennsylvania. Dozens of people arrived early on a Sunday morning and stayed into the evening. Aunt Marge and Uncle David manned the ovens with precision. Fran and her husband, Jackie, Fraya, Maggie, Tim and his wife, John Brooks and his amazing family, mothers from Liam’s and Ella’s preschool, and so many people from so many walks of life…some new to the cause and some for a second year. It was labor intensive work – hand carrying boxes across a lobby that didn’t allow hand trucks, bringing supplies from the apartment to the cooking school, transporting boxes addressed and ready to be shipped to Ronald McDonald Houses eight blocks, making a pickup of supplies in Brooklyn, and constantly be looking at the boxes of dough and calculating how much was left to bake. We baked on a Sunday and Tuesday.

On Tuesday afternoon after we had finished baking and most of our volunteers had left a beautiful woman with luxuriously thick hair introduced herself to me. She was about my age. Her name was Lillian and she found her way to our bake-a-thon via a mutual friend. I liked her the minute I met her. And then she told me our true connection. She was a neuroblastoma survivor who was diagnosed when she was around 2. She had been given less than a five percent chance of surviving. She beat the odds. And she lived less than a block away from us. She and Liam shared the same surgeon and she showed me the signature Dr. LaQuaglia scar that wrapped around her body from her belly button to her back as proof. Her teeth were normal. She didn’t have hearing aids. She was smart. She was successful. I needed to meet her. I needed to know she existed.

And then on Wednesday after all our packages were on the way to families who were away from their homes, Liam had his three month scans. The scans that leave you with a dry mouth and weak knees. Liam was completely oblivious to the stress, played the role of greeter to everyone he saw. He was Mr. Personality serenading nuclear medicine with sounds from his blue guitar. Wednesday was the CT exam and MIBG injection. Thursday the MIBG and brain MRI. The brain MRI was incredibly loud. Liam didn’t like it and, as he does so often when having to deal with things he just doesn’t want to deal with, opted to fall asleep during the MRI. It made me think of the time he was on a ventilator which he hated with a passion and opted to fall asleep instead of having to be awake and uncomfortable.

And when the results came in, we reset the clock for 90 days. We could go on just being.

Christmas was a magical time. Liam and Ella reveled in the excitement of Santa. Ella slept in Liam’s bed on Christmas Eve. They were both too excited to fall asleep and kept each other company with talk about Santa. We watched with joy as they opened presents and squealed with delight. Liam loved his model of the solar system. Ella loved her baby doll twins that came with a trundle bed, blanket and pillows. They played and played and were just beyond excitement. We spent two weeks in New Jersey, the longest period of time we’ve been here since Liam was diagnosed. It was incredible. We all felt “normal.” It felt good. It felt natural to be here in our home. It snowed which brought a new level of joy and entertainment. Our sledding jaunts were filled with laugher. Every day Liam would talk about how much he loved the Christmas tree. When the day came to take the tree down, Liam and Ella were both so sad to see the tree leave. Change is never easy, whether it’s a Christmas tree coming down or the loss of the innocence we had before February 26th, 2007.
The only disruption to our oasis of peace was the need to unexpectedly drive to Memorial Sloan-Kettering on Wednesday, 12/31, to pick up GMCSF (the medicine that stimulates white blood cell production which makes antibodies more effective). Liam’s HAMA negative status allowed him to move forward to receive more antibodies, a very good thing. The Wednesday before antibodies, he begins daily injections to makes lots of white blood cells, the “fighter guys” as he calls them. We spent New Year’s Eve and the weekend following ensconced in our cocoon sledding, climbing on snow piles, pretending we were at a winter resort, and trying to stay in the moment. I suppose it was somewhat apropos for cancer to invade our oasis on the last day of the year. Liam took the news about needing shots fairly well. The first three nights we dealt with the normal bout of tears and the feeling of torturing your child. But the fourth night he surprised us. While Larry and Ella were out picking up a pizza, Liam’s latest passion, he let me give him an injection alone. We discussed where I was going to give it to him, how I was going to insert the needle, how I was going to push in the medicine (s-l-o-w-l-y) and how I was going to remove the needle. And then, he stood in the center of the playroom without flinching or crying and received his injection with no complaints.

After two glorious weeks of just being, it was time to return to New York. I’d be lying if I said I escaped the thought of cancer. I never can. It’s always there. It’s the monkey that rides on my back wherever I am and whatever I’m doing. The monkey was heavier knowing that friends of ours were dealing with tough news. I kept thinking of them and looking at sales of cookies and feeling like I failed because we didn’t sell as many cookies as we hoped. I kept feeling the need to live for every moment, something we all should do anyway, but with an added sense of urgency. I have not lost faith or changed my belief that Liam will be here for a very long time. He’s a lucky kid. We taught him how to flip a coin over the holiday break and over and over and over again he correctly called if the coin was a head or tail. He didn’t miss. But I know just how tough and relentless our cancer is and that it doesn’t like to give up easily which makes me more focused than ever to not only dedicate myself to raising money for pediatric cancer research but also balancing it with loving and living.

The round of antibodies at the “regular” dosage went well. He despised the finger prick on Monday, but knew there was no way around it. He didn’t like the temporary line which is now a necessity since he is “port free,” but he dealt with the experience. I had to grab him and bring him to the chair in the IV room where it took two of us to restrain him while he kicked and screamed at the top of his lungs. A third nurse skillfully pierced a vein to insert the line over screams, kicks, and attempts to pull his arm away. The good news is he is really strong, a great sign after being pummeled with high doses of chemo. The bad news is it takes more to restrain him which makes you feel awful. Once it was in, he was OK. I felt like I was violating him and let’s face it, I was. I hate having to grab him. Hate it. It’s the one time that I always feel the tears welling up and a wave of anger bubbles up to the surface. But then it’s over and he’s OK. I’m always amazed he doesn’t completely reject me for putting him through the experience, but whether it’s restraining him to put in an IV or giving him an injection, I’m the one he wants to have hold and comfort him afterwards.

He went to school every day during the week except Tuesday. It takes a while to recover from the first day of antibodies. The schedule each day went something like this: wake Liam up early to ask him if he wants to go to school; take him and his hospital paraphenalia to school; work while sitting on a bench outside his classroom; collect him and his hospital stuff including stroller and catch a cab to the hospital; ask him if he wants pizza from the pizza place next to the hospital; maneuver him, the stroller, his hospital bag and my portable office to the pizza place; get him in the stroller (he’s usually exhausted after school) up two steps and into the pizza parlor; order two slices with extra, extra cheese; balance the box of pizza on the top of the stroller cover and walk to the hospital while pushing the stroller; go to the 9th floor and check in; get to our treatment room and encourage Liam to eat his pizza as quickly as possible so that it will stay in him and he won’t throw it up after the antibody infusion; collect a vial of blood for a CBC from the temporary line and hope and pray it works and stays in place; start the premedication process which includes anti-nausea medicine and pain killers; give him an injection of GMCSF; wait an hour to start the infusion; go through the typical and troubling antibody infusion which includes screams of pain; wait for him to pass out which he does while draping himself on me and instructing me not to move; and then waiting for him to recover to the point he feels he can be moved to go home, the point that if he’s going to throw up, he usually does. As a human being and parent, your natural instinct is to try to make a child suffering more comfortable by doing anything you can to alleviate pain. I would want to rub him, caress him or do something that I thought would bring relief. As he was dealing with his pain, he would quietly tell me, “Mommy – Just be. Just be.” And I would just be…be whatever he needed me to be to help him bridge the canyon between being blinded from pain and being able to cope. His words have become my mantra as I try so hard to just be. Early in the week I saw a mom I have met a few times and who I adore talking excitedly with several of the nurse practitioners. I assumed she was in the clinic for 90-day scans. On Friday, I saw her again which didn’t make sense to me since she would only be there for two or maybe three days dealing with scans. And then she broke the news. She told me that on the day of her son’s five year anniversary of diagnosis, she found out he had relapsed. Dr. LaQuaglia did an exploratory surgery on Monday and discovered a mass in her son’s original tumor location. Her news made my head spin. I felt like I was floating above my body listening to a conversation between two people that was almost implausible. Are you kidding? Almost five years to the date of his diagnosis? Are you kidding? He was gearing up for the start of chemo which this time would be challenging because he lost a kidney during his first go around with neuroblastoma. He only had one kidney to help filter the toxic chemotherapy agents from his blood. And the thing that has happened so, so many times happened again. I felt like I was running through a haunted house with scary monsters on the other side of every door trying to find the one door that would lead me out.

That weekend we booked a trip to Disney World for the following week.

We went to Disney World on Thursday, January 22nd under the auspices of celebrating Ella’s 3rd birthday. Liam played the role of mayor. Ella was Liam’s loyal side kick. He introduced himself to the pilot. He thanked the pilot for a safe flight and told the flight attendants he’d see them soon. Ella and Liam had breakfast with the Disney princesses. While meeting Cinderella, Liam invited her to join him for breakfast. When she told him she was busy greeting other knights and princesses, he invited her back to his pretty hotel room to play. Ella was completely enthralled with the princesses and other characters. Liam rode the Thunder Mountain roller coaster 12 times. Yes, 12 times. Ella was too terrified to ride it but after Liam’s 9th trip, Ella worked up the courage to go on the scary roller coaster. She did great safely nestled next to Daddy but also chose not to ride the Coaster again. Once was enough for our very sensitive little princess. They were randomly selected to be junior casting directors in the Indiana Jones show. In front of an audience of more than 1,000 people, they stood on stage and said, “Lights, Camera, Action!” They did a fantastic job! We thought for sure Ella would be too shy to stand up in front of a large crowd, but with Liam at her side she did it (http://www.youtube.com/watch?v=Maa3AJ4RnbQ). Of course less than three minutes into the show, we needed to leave the theater because Ella was terrified of the fire on sate. We rode rides; watched parades; marveled at elephants, zebras and giraffes within a few hundred feet of our hotel balcony; and enjoyed being pampered by the Disney staff and warm weather. Liam and Ella had so much fun. Small World was a big hit as well as the Buzz Lightyear rides. But Liam’s favorite by far was riding the super fast, gut wrenching, dizzying Thunder Mountain roller coaster. He would laugh nonstop, hold his arms up in the air, and embrace the experience…the same way he has approached life. He would make his presence known wherever we went whether on our early morning safari with George the guide (“Oh George! I have another question for you! George! Come eat breakfast with us at our table!” And George, unable to resist the charms of Liam, did) or with the hotel staff (“Mommy – I need to go see my friend Jack and see how he’s doing today.”)

The evening we returned from Disney, we received the news that Liam’s blood which was drawn on the day we left for Disney (nothing like a quick trip to the hospital before we could escape town) was HAMA negative and we could proceed to another round of antibodies. The injections started on Wednesday. We’re gearing up for round two which begins 2/2 and worrying about two more friends who recently received difficult news. It makes my heart physically ache.

So how are we? We’re good. Living in the moment and trying to do what we can to make a difference and doing our best to accommodate the monkey living on our backs. It hasn’t gotten any easier in nearly two years of him living there and we’ve learned the more you fight him, the harder the burden is to carry. Just be. Just be.

http://www.cookiemag.com/homefront/2008/12/gretchen-holt

Thursday, November 13th. Fourth Day, Second Round, High Does Antibodies

2008-11-15T02:12:00.000-05:00

A Week that has left me Weak.

I can’t even begin to explain how hard this week has been. Liam turned 4 ½ on Thursday. He spent the day undergoing the fourth day in a row of a very intense antibody treatment intended to give him life but left him limp and with little life in him. Like the last round, he spent the week curled up in a fetal position; whining “Mommy – I want you” if I stepped away from him; clutching me with both hands wrapped around my neck when going through the super painful part of the treatment and commanding me not to move; not talking except to cry “I don’t want Ella close to me”; gingerly sliding him into and out of a cab on the way to/from the Upper East Side; not eating…at all…; throwing up green, vile smelling bile with such force it flew out his nose; refusing to take yet another “pillow” (pill) for either pain, prevention of nausea, antibiotics left over from the infection that wasn’t but that we were still taking precautions to treat just to be certain, or to prevent a fever…but always in the end obliging and swallowing up to two pills at a time; and crying in pain and discomfort beginning Monday afternoon. It has been heart-wrenching. And on Monday we had a bit of a scare when Liam’s body reacted on day one to the onset of a high dose of antibodies coursing through his body combined with the narcotics intended to shield the pain with a low blood oxygen rate and extremely high heart rate. It was one of those hand-shaking-uncontrollably moments when you and a nurse realize something is very wrong, hear your voice say to the nurse you know so well, “Cat? Cat! Cat? Now, Cat, Now! Cat, Now!” as you watch her quickly go into emergency mode as she assembles an oxygen mask and places it over Liam’s limp head being cradled in the crux of my arm with his equally limp body sprawled across me, and seeing her press the red emergency button that just two weeks ago Liam was mischievously threatening to push to see what would happen. Watching a swarm of doctors, nurse practioners and nurses descend into the small treatment room on an unresponsive Liam yelling things like “how much Narcan (a drug used to reverse the effects of narcotics) did he get and when,” “he has a pulse!” and “Breathe, Liam, Breathe! Breathe, Liam, Breathe!” Watching a wet spot spread across his jeans as his body lost control. Noticing the “crash cart” used only in emergencies positioned outside treatment room nine where we were located. Watching him throw up and smelling the pretzels he had eaten handfuls of a few hours earlier in the contents violently expelled from his stomach. Calling Larry with a trembling voice to say, “Get here now!” but not being to explain what was happening because the vice grip on my throat prevented me from saying anything else. And gratefully seeing the numbers on the monitors returning to normal ranges. I don’t want to do that again.
On Thursday, November 13th, I had a conversation with a mother whose son was being treated next door in room number eight. She was from Barcelona and was in the tiny room that was separated from ours by a wall that went ¾ of the way up with a curtain as a door. I had heard her talking during the week and noticed a certain level of stress in her voice. I know the sound. I recognized it as one I’ve heard in my own voice, as hard as I try to hide it. She was in the room with her son who was undergoing antibody treatment and was sleeping off the pain of the treatment courtesy of “comfy” medicine, and her younger son who was totally cute and completely oblivious as to the significance of his surroundings. I said hi and she embarrassingly looked at me and said something in Spanish that indicated she spoke no English. We tried anyway to communicate. It was her son’s second round of antibodies. He was seven. He was diagnosed in February 2008, exactly a year after Liam. He had undergone bone marrow transplant. They flew back and forth to Barcelona between treatments. Her younger son 2. She was staying at the Ronald McDonald House, where so many families who come to Memorial Sloan-Kettering from out of town and out of the country stay. I gave her my e-mail address and told her to write to me when she was next coming back so that I could help her any way I can. And then something that rarely happens to me happened. I looked at her and felt tears welling up in my eyes. She saw and we hugged and cried. She talked. I had no idea what she was saying but it didn’t matter. I wanted to take her pain away. I didn’t want to meet her under these circumstances. I wanted the pain for both of us to go away.

We’re now in New Jersey. It’s early Saturday morning or late Friday night depending on how you look at a clock. Liam hasn’t walked more than five steps since Monday afternoon and hasn’t eaten since Monday, but he did smile twice tonight. We are so eager to see him emerge from his stupor. We want him back. We need him back. We miss our baby boy. Ella misses her brother. We can’t wait to laugh with him and watch him be a little boy. Yet we are so grateful to have the opportunity to receive this treatment which is a few streets away from us. We could be flying here from Spain instead of taking a 10 minute cab ride. And for that, we are so very fortunate.

A bizarre week.

2008-11-08T21:47:00.001-05:00

Even when I tell you, I’m not sure you’ll believe me.
What happened October 28 – October 31

A conversation with Liam on Saturday, November 1st around 3 p.m.

“Mommy, what are those lines on your forehead?”
“Oh, honey, they’re from worrying about you and Ella.”
“Why do you worry about me and Ella?”
“Because I love you and Ella and will always worry about you two, even when you have your own children.”
“Mommy, why don’t you get some butt-tox for your lines?”

When I walked in the door from work on Tuesday, the 10th day in our 21 day hospital break, I was greeted with squeals from Liam and Ella and the news that Liam threw up part of his dinner (the turkey meat balls he used to love but hasn’t eaten in months after his taste buds changed from chemo) but continued eating after he threw up. OK. That’s not normal. Ella is our thrower upper, not Liam. In fact, Ella had thrown up on Monday night and just that morning before she went to school after choking on some post-nasal drip in her throat. (She can throw up just with the mention of the word, quite a talent.) And then Liam’s squeals quickly changed to whines, “Mommy, I want you to hold me.” “Mommy, Hold me…just hold me.” Something was off, but he looked fine and I wanted to believe it was nothing. At around 7:45, Daddy felt his head and thought it felt warm. Liam was uncharacteristically out of gas. Out came the thermometer and from there, with a temperature of 101.5, an adventure full of many plot twists and turns began. For Liam, a fever is anything over 100.4 and earns an instant trip to the hospital. Because he has a medical port connected to a central line, the concern is that a fever could be an indication of a line infection which can come on very suddenly and be life threatening. You have no choice but to take a fever seriously, no matter what time of day or night.

I put the numbing cream on his medical port knowing it was going to need to be accessed. As soon as Liam saw the tube of cream, he started to cry. There’s only one reason that tube of cream comes out and he was not happy. I felt like I was breaking our deal of three weeks of no hospital time, except for a blood draw to test to see if he can continue with a second round of antibodies. And as soon as Ella saw me putting cream on her brother’s “button,” she started to cry and in a shaky voice kept saying, “Don’t leave, Mommy. I…don’t…want…you…to…go…to…the…hospital.”

We went to urgent care with Liam in his soft, zip-up footed jammies wrapped in his comforter and snuggled in the stroller. We anticipated a quick trip for antibiotics so we travelled light – puppies, pillow, super soft yellow blankie, movie player, a collection of movies and a cup with water. The ride to the hospital was quick and as we were walking down the long hallway on the ground floor that snakes through the belly of the hospital over to urgent care, we passed Liam’s favorite room: the steam pipe room. The doors were open, a rare sight, and a group of workers were walking in and out with pipe, tools and other important looking pieces of equipment. We stopped and I knelt down in front of the stroller to answer Liam’s questions. “What’s that pipe for, Mommy?” (Luckily the pipes were labeled with arrows indicating the flow of steam and a few descriptive words allowing me to actually explain what each pipe was for which elevated me to rock star status in my son’s eyes.) One of the workers with the word “Supervisor” embroidered on his shirt stopped to say hello. Liam eagerly but not with all of his typical energy told him that the pipe room is “awesome!” The man was dripping with sweat and his shirt was soaked. He explained to Liam that a pipe was broken and that the pipes in the room all carried steam that brought heat to the 10 buildings that were part of the hospital system. Liam was in nirvana. He asked question after question. He wanted to know how the man could get so hot that his shirt could be soaked. He wanted to know how steam could heat a building and I lamely tried to explain at a level he would understand and that would make sense. After watching the activity for as long as he could, Liam finally looked up at me and said, “I’m ready.” So off we were to urgent care. The waiting room was packed and our stroller was the only one in the waiting room. There were stretchers lining the hallway filled with people in various states of discomfort, most of them with skin with a yellowish tinge that is often seen in cancer patients. I immediately whisked him over to the check in area and turned his stroller around so that his back was turned on the sea of waiting patients and their worried-looking families and friends. We checked in and very shortly after were taken into the triage room. His temperature was taken. It was 104. Not good. We went back to room 5 which is one of the isolation rooms, not because Liam was a risk to other patients but because it was the only open room. We waited for over an hour in the isolation room before anything happened and then went through the normal routine of questions; wrestling with and restraining him in order to access his medical port over blood curdling screams of “MOMMY – DON’T LET THEM TOUCH ME!!! MOMMY – NOOOO! NOOOO! NOOOO!!!; a visit from the pediatric fellow who asked many of the same questions; a Tylenol pill for my pill-popping baby; and finally a dose of antibiotics but not before having to track down a “pee pee cup” (urinal) which Liam always reverts to when having to pee when he’s in the hospital. I’m convinced he insists on using a urinal because he likes them. We got the antibiotics and during the course of the infusion Liam bolted upright and said in a panicked voice, “Mommy – I’m going to throw up! I’m going to throw up! Get me a throw up bucket quickly!” Of course there wasn’t one in the room. In pediatric rooms, there’s a ready supply of them and you can almost always find one within an arm’s reach. So, I grabbed the trash can, pulled the bag out, grabbed an empty bag underneath and got it to him just in time. And between sessions, I ran out to the nurse’s station to ask for someone to grab a bucket which is the same shape and size of dishwashing pan in a lovely shade of harvest gold. No bucket came. He finally fell asleep. The antibiotics finished, his temperature was gone, but because it had been so high the fellow wanted him to get an extra hour of IV fluids. OK. Fine. That meant we wouldn’t be leaving until around 2 a.m. I hope I can find a cab on York Avenue at that hour. After the additional fluids, the nurse came in to begin the process of getting us out which would include deaccessing his medical port, never an easy thing. Just to be sure everything was OK, I asked her to take Liam’s temperature. It was 104. Crud. With a temperature that high, I had a feeling we wouldn’t be going home. The nurse called the fellow who decided she wanted us to stay. Unfortunately there were no beds available on the pediatric floor, so we had to spend the night in urgent care with the directive to go straight to the day hospital when it opened. Liam wanted to know what was going on. I told him his temperature came back and so we needed to stay a little longer. He wasn’t happy but was too tired to protest. At this point I was happy I had decided to bring along Liam’s comforter which was now serving as our blanket as we huddled together on the urgent care stretcher. Liam’s fevers caused him chills and then sweating so badly I’d either need to be rubbing his body all over to warm it up or stripping off his pajamas and fanning him when his fever was breaking. Finally it was 7 a.m. and we could go upstairs to a place we were more comfortable with and that was better prepared and equipped for young patients. We waited, and waited and waited for the OK to leave urgent care and go upstairs. After an hour of waiting, a new nurse came in to tell us she was waiting to give a report on our situation to a nurse upstairs on the pediatric floor before we could go. Liam wanted to leave. He’d had enough of urgent care. And then there was more throwing up into a plastic garbage bag. And finally, after Liam and I were ready to blow a fuse, we were told we could go upstairs to the pediatric day hospital…after one last set of vitals. His temperature was back up but not 104 again. After popping a Tylenol, we headed upstairs.

Wednesday morning and we’re in the day hospital, also known as the clinic although to me there’s nothing “clinic like” about the 9th floor. Dani, one of Liam’s favorite nurses and who I always feel comfortable with, was our nurse. We were in a bed in the room off the IV room that is divided by a curtain and usually reserved as a holding area for surgery patients. The second the stroller turned into the IV room, Liam immediately wanted to know what we were doing there. He associates the IV room with one of two things: a finger stick which he despises or having his medical port which he despises even more. When we walked by the IV room treatment bays and the finger stick area, he relaxed. And then the waiting started. First we had to see Ester to be examined. “Has he been sick?” “No.” “Has he been around anyone who has been sick?” “Ester! He’s in preschool…of course he has! And, Ella has a cold but it hasn’t come with any temperature as far as I can tell.” “Has he been complaining about anything?” “No.” His mouth, eyes, ears and nose were examined and all checked out as clean. And then back to the bed to wait and hope no more fever. Liam was exhausted and didn’t want to get out of the stroller. I have always suspected that Liam’s stroller is his safe zone where he knows nothing will happen and out of respect, I have listened and never allowed anything to happen to him when he’s in his safe zone. It was late morning and no fever. Early afternoon and no fever. At some point during the day Liam woke up and said, “Mommy – I’m wet.” After receiving so much IV fluids, his little body overfloweth but he was too tired to realize he needed to go. Unfortunately because we thought we were only making a “quick trip” to the hospital, we didn’t have our normal arsenal of supplies. I told Liam I could get him a pair of jammies from Teres in Child Life. He immediately burst into tears. He didn’t want to wear hospital jammies, he wanted to wear his dinosaur jammies from home. He wanted Daddy to bring those jammies right now and he wanted Daddy there right now. We took off his footed, one-piece jammies so that he could take off his underwear, and then put the wet jammies that I lined with paper towels back on so that he couldn’t feel the wetness. He went back to sleep in the stroller and I fell asleep sitting upright in a chair. And then Dani came in to break the news. Liam’s blood culture taken when we arrived at urgent care tested positive for bacteria, the same type of bacteria he tested positive for in September. Ahh, that explains the temperature. But oh no, I know what a positive culture means….an inpatient stay. We were being admitted. Liam was sleeping. I started to cry. He was so looking forward to Halloween. He was having a good time at school and making great friends. He was enjoying being a little boy and far away from the hospital. I cried for him. I cried because I was tired. I cried out of frustration. I cried for not having any control. But then I accepted and started thinking about what I needed to do to get him out of the hospital in time for Halloween. I asked if we could go home on IV antibiotics, something I learned how to do during his last visit. I felt like I was being scolded for suggesting something so risky when we didn’t even know what kind of bacteria it was. And then I was reminded that if it was gram negative rods, it could be sepsis which is extremely serious. OK. Fine. But I’m still going to hold onto the goal of getting him out in time for Halloween. What the heck…why not? I always like to have a goal to shoot for. One of the doctors from Liam’s team came in to check on us and discuss her recommendation. Her suggestion was to remove his central line as quickly as possible and have it replaced with a temporary line. The explanation was that the bacteria was looking like the same one he tested positive for in early September which would indicate that even with a two-week course of powerful Vancomycin antibiotics, the bacteria had colonized in his port which it is apt to do and that it would keep regrowing unless it was removed. It would also mean we’d need to treat the infection through IV antibiotics and a temporary port which would mean the return of dreaded dressing changes, an increased risk of infection with tubes hanging down his chest and a new incision on the “clean”, incision-free side of his chest. OK. OK. All of this stuff is nothing if it means avoiding a fight against sepsis. I remembered hearing from my dear friend Lee how scary it was when Bob was battling sepsis. I didn’t know many of the details other than it was really bad. Dr. Kayton, one of the incredibly talented surgeons in the stable of incredibly talented surgeons in the pediatric department and one of the most empathetic physicians I’ve met came to visit. We discussed the positive blood culture, the need to take Liam’s port out and then the need to put in a temporary port. To Dr. Kayton, this was no big deal. He kept saying, “This is something we can fix.” To me, a mother trying to protect her son from from a different perspective, it was. I just wanted to make absolutely sure we needed to do this. Was there a chance that even though the bacteria was looking like the same he tested positive for six or so weeks ago, could it be possible it was a new bout with this bacteria and not a situation of the old bacteria coming back? If there was even a chance, I wanted to make certain we looked into that possibility. Where could he have been exposed to bacteria? Ridiculous question, I know, since bacteria are everywhere. But how could he have gone so long without any bacterial infections, more than 20 months, and then have two within a six week period? And how did he go from feeling great on Monday to awful with a high fever and higher white blood cell count on Tuesday? Monday afternoon he was in a class where he planted seeds. And when he came home he even had some dirt around his nose after being particularly exuberant. Could it be possible he picked up the type of bacteria he tested positive for which is common in dirt from the potting soil? If it was at all possible, I wanted to chase down that theory, even if I was being told it was highly unlikely. I kept trying to sum up my limited knowledge of the way bacteria can enter a body to try and come up with some explanation while also asking every few hours if anything had changed in the tests and if the super scary gram negative rods showed up. Liam took cat naps in the stroller. Between his naps, he kept asking when we were going home. I could only tell him, “as soon as we can, honey, as soon as we can.” While we waited to see if we were possibly going to be released with IV antibiotics, I could hear activity in the bed next to us. It wasn’t the normal activity of pre-surgery, which is usually what the two beds in the room were reserved. Voices sounded worried. “Did he eat anything?” “Ben, Ben, stop doing that Ben.” “Did anything different happen?” I could hear a young child who sounded about Liam’s age crying a very bothered cry. A yamika kept flying to the floor on our side of the room and his mother was yelling, “Ben – Your yamika! Ben – Not your yamika.” I would pick it up and blindly hand it around the curtain to Ben’s mother who would take it from me. I could hear people coming in and out. The questions weren’t the questions you normally hear. I could hear doctors from anesthesia coming in to check on Ben. I could hear them saying they used the same medicine they always use. I heard a nurse talk to a mother about how to use an Epi pen, something I certainly hadn’t heard before. I heard talk of an allergic reaction. The mother was asked the same question over and over by a litany of people, “did he eat or do anything different than his normal routine?” The mother sounded scared, frustrated, tired, perplexed, and emphatic that no, her son hadn’t done anything differently. It was sounding a bit out of control. They kept talking about his face…his face. Ben bit his mother out of pure agitation. He clearly wasn’t happy. All of the commotion woke Liam up who alternated between looking at me to get confirmation that the child he heard crying less than an arm length away from him was OK and watching Sponge Bob Square Pants, an activity reserved only for the hospital. Finally after an infusion of Benadryl, Ben fell asleep. He mother sounded relieved. A nurse brought her a video on how to use an Epi pen and talked with her about how to use it. “Where do you put it?” “Usually in the leg.” And then around 3 p.m. came the icing on the cake which sealed our fate…his temperature shot back up to 104. His infection was still out of control. The wheels for an inpatient stay which we were trying so hard to avoid were rolling forward. Discussions were taking place about taking Liam’s central line out. I knew the danger and wanted it to be gone, but also wanted to make sure we were doing the right thing. And any hope of leaving the hospital that day were now completely dashed. Dr. Kayton came back to visit. Liam was sleeping. He showed me what the temporary port looked like and my stomach churned. I asked questions. He answered them all calmly. The temporary line looked ugly and obtrusive and I hated that it would mean more scars for Liam, scars on the “scar free” side of his body. Dr. Kayton left and I sat alone feeling so disappointed for Liam and trying to come to grips with what was about to happen. A voice said, “Do you want to see what a temporary line looks like?” It was Ben’s mother. I walked around the curtain. Ben was sleeping a deep drug-induced sleep on his side. His mother stood up from a chair where she was sitting holding the Epi pen instructional video. She was younger than me but seemed older. She was wearing a skirt, something I would never do because of the inconvenience but she did for religious reasons, and had her long hair secured by a net to prevent it from flowing freely. She pulled her sleeping son’s shirt up to show me the line. It wasn’t as bad as the first one Liam had in, but it still made my stomach lurch. A flood of memories of changing the dressing for Liam’s first line came flooding in. The tears. The fighting. The restraining. The fear we weren’t being sanitary enough. The fear both Larry and I lived with that we weren’t doing it right and potentially causing irreparable damage. The frustration for Liam not being able to take a bath or shower. Having to be super careful that Ella didn’t see the tubes and yank on them out of curiosity. She told me it really wasn’t that bad. But it was still not what I wanted.

Liam woke up and wanted to know when we were going. I broke the news to him that he had a temperature. Even Liam knew a fever wasn’t good. “Oh no, Mommy, not a temperature. That’s not good.” He didn’t say much when I told him that we were going to have to spend the night. I explained that there were germs hanging out on his button, a special kind of germ called bacteria. He kept asking over and over why germs liked his button and how they could build houses on his button. Daddy finally arrived for moral and emotional support as well as fresh jammies. And then we were off to room 25B, the same room in the same bed we stayed in for several stays including our neutropenia stay this summer and in the same room we were in during our last stay. But this time we were going to be sleeping in the bed the noisy Chinese family we had so many issues with during our last stay slept.

We settled in for a quick stay. Our neighbors who were staying on the side of the room we checked out of on September 11 included a mother, grandmother and baby. A giant yellow cage-like crib replaced the hospital bed that’s normally in the room. The cage cribs are really frightening looking to me. Liam checked out the goodies Daddy brought. We discussed with the inpatient team the game plan. I started the process of explaining to Liam what was going to happen tomorrow. This was a totally unexpected stay and I could tell he was still trying to process it. As is Liam’s style, he was being a good sport something I was so proud of but also loathed that he had to be a good sport. Dr. Kayton stopped in to check on us and give us a surgery time. It was the first time Larry had a chance to talk with him. I heard him repeating the same information he went over with me and I could also see Liam getting agitated. The one thing I didn’t remember hearing is that it would be at least a 45 minute procedure. I walked with Dr. Kayton down the hall as he was leaving and lamented the fact one more how badly I felt about having to put Liam through this experience. He looked at me and said in a very measured voice with a touch of bewilderment, “It seems like you’re particularly attached to this port?” And I again found myself explaining that Liam’s health was my number one priority, as I knew it was for everyone at the hospital, but a close second was his mental health and a temporary line was something I just so wished he didn’t need to go through.
Daddy left to go home to be with Ella but not before making a giant tissue paper pumpkin for Liam in the tiny play room. Liam squeezed puddles of glue on construction paper and then covered them with blue sparkles that went everywhere while Daddy worked on the pumpkin. I gingerly talked with Liam about getting his button out the next day and explaining the concept of the temporary port on the opposite side of his chest. I didn’t want him to be scared or freak when he woke up and felt something in a place he’s not used to feeling things. I checked on the status of the blood culture taken the night before which, so far, was not showing gram negative rods. I was told that if he did have gram negative rods, they would have shown up by now. It was a huge sense of relief. A sepsis infection was something I wanted to stay as far away from as possible. Liam went to sleep with my arms wrapped around him in the bed with the blue plastic mattress neither of us liked. Throughout the night as Liam’s vital signs were taken, I kept waiting to hear he had another fever…but he stayed fever free which gave me great relief. Maybe the combination of antibiotics was working. Just before the night nurse left at 7 in the morning, she came in with a small pouch of medicine that needed to go into his IV. She volunteered that his coagulants were off slightly and he was going to get a dose of vitamin K. I joked with the nurse that something on this side can be off ever so slightly and the immediate reaction is to throw something at it. But vitamin K sounded innocent enough so I wasn’t going to fight or question it. Clotting is good thing to have during surgery.

In the morning, Courtney, one of our favorite nurses greeted us. She was surprised to see us and while happy, disappointed we were back on the floor. We talked a bit while she fiddled with the IV infusions. She hooked up the vitamin K and as she was finishing, Liam announced he had to go stinky. He didn’t have socks on so I carried him into the bathroom and had him first stand while balancing on the toilet seat while I took off his jammies and then lifted him to place him on the toilet seat. He asked me to leave so he could go stinky alone and close the door…all the way…behind me. Courtney and I chatted while Liam did his business. I checked on him – “Everything OK?” “Yes, Mommy.” “Are you finished?” “Not yet!” – and was reminded to close the door all the way. All of the sudden Liam started saying his tummy hurt. I popped my head in and said it probably hurt because he hadn’t eaten since Tuesday night. He told me it really hurt. And then he said, “I’m going to throw up!” I opened the door and let him throw up into the empty trash can. He finished throwing up yellow bile and I wiped his mouth off. I asked if he was finished and he told me no so I left the bathroom. Courtney and I looked at each other with puzzled looks wondering why he had thrown up. Liam started saying, “My cheeks feel funny. Mommy, my cheeks feel funny. They feel really funny.” What? His cheeks feel funny? What in the world? I opened the bathroom door, Liam lifted his head to look at me. His face was completely distorted and bloated to the point I barely recognized him. His lips were so swollen they looked like they were going to explode. I turned quickly turned while crouched in front of Liam, looked at Courtney and said, “he’s having an allergic reaction!” She looked at Liam and ran out of the room. He started to throw up again. As soon as he was finished throwing up I lifted him off the toilet and wiped him while holding him and carried him while pulling the IV pole over the big bump at the bathroom door to his bed. “Mommy – My pace peels punny….Mommy…My pace peels punny.” His lips were so big he was having a hard time talking. They were stretched so much that all color was gone. His ears were so swollen that the skin looked almost translucent. His eyes were slits. I held him in my arms while he alternated between talking about how weird he felt and screaming in pain that his stomach hurt. The level of pain he was in was greater than antibody pain. I called Larry quickly at home to tell him Liam was having an allergic reaction and I needed him there now. Residents and nurses came running into the room. Orders were barked to get him Benadryl. A dose was pushed directly into the line to get it in as fast as possible. Steroids also went into the line. Oxygen was brought over and a medicine to keep airway passages open was added. Liam started complaining about breathing being more difficult. I felt myself levitating over the scene looking down at what was unfolding. It didn’t seem possible. He had received vitamin K before. He took a pill of it the last time he was inpatient. I surveyed the room of people. I asked where the attending doctor was and was assured she had been paged and was on the way. I wanted her there as soon as possible. She didn’t arrive. Liam didn’t look better. His screams were more intense. An alarm on the machine that registers heart rate and oxygen saturation levels sounded. A nurse came over to try to fix it which meant fiddling with a piece of tape connected to a sensor that wraps around either a finger or toe to monitor the amount of oxygen in his blood which indicates if he’s breathing OK. The machine beeped five quick beeps in succession, paused, and then beeped again. An order for the Epi pen was issued. Courtney and another nurse were over at the counter by the sink fidgeting with something. I could hear them trying to talk quietly but could hear what they were saying. “It went off?” “Yes!” “In your hand?” “Yes!” “Are you OK?” I saw Courtney run out of the room. “Where’s the attending?” “Where’s the attending?” There were five residents standing in front of me staring at Liam. None of them moved. None of them said a word. The doctor working directly with Liam wore the same white coat as the residents so I couldn’t tell if she was a resident or a fellow which is the next level up on the chain of command. She kept telling me in an irritated and exasperated voice that the attending was on the way and had been paged. “Page her again,” I said. She didn’t do anything. “Send someone else to get her! None of the residents are doing anything…send one of them to track her down. I want her here NOW!” One of the doctors left. Liam was screaming at the top of his lungs. His face was swelling even more. His upper lip was so large it touched his nose. His lower lip jutted out past his chin completely changing the landscape of his face. He didn’t look like my child any more. He was screaming in pain. The residents just stood there. Courtney came back into the room with another Epi pen. The pen was taken out of the box. Liam saw it and panicked even more. “NO…NO…NO…NO!!!!” “Liam – We HAVE to! I’m sorry, honey, but we HAVE TO!” I pulled on the sleeve of his jammies to get his arm free. He yelled at me and fought as hard as he could. “NO! NO! NO!” I got his arm out. Someone said that normally they’re administered in a leg, not arm. “Can it be done in the arm?” No one answered the question. It would be impossible for me to get his leg out of his jammies while trying to restrain his flailing arms and legs. I could hear Courtney giving the doctor instructions on how to use an Epi pen over Liam’s screams. She had never done one before. “Make sure you hold it in for at least 10 seconds.” “Where’s the attending?!?” I was now shouting over and over. I was scared. A nurse was trying a different machine to monitor his heart rate and blood oxygen levels. It also wasn’t working. And for a brief moment I allowed myself to think the unthinkable about what was happening in front of me. Liam screamed in agony at the top of his lungs. I held him tight. The Epi injection was given. It made a strange sound like the top of a super carbonated soda bottle shooting off. Liam screamed a new scream. It hurt. He was pissed. “WHERE’S THE ATTENDING!” “WHERE IS THE ATTENDING?” More than 20 minutes had gone by and no attending doctor. Larry kept calling and I would answer the phone and talk if I could but more frequently would just let him hear what was going on in the room with his precious baby boy. Liam’s screams about his tummy hurting were nonstop. He was in agony. “WHERE IS THE ATTENDING?” “IF SHE DOESN’T COME NOW I’M GETTING UP AND CARRYING HIM TO HER.” The doctor kept assuring me she had been paged. She had been paged. She didn’t come. I stood up from the bed with Liam in my arms. “GET HER HERE RIGHT NOW OR ELSE I’M WALKING OUT OF THIS ROOM TO FIND HER WITH LIAM!” Liam’s screams of pain continued. “WHERE IS THE ATTENDING WHERE IS THE ATTENDING WHERE IS THE ATTENDING!!!” A second Epi pen injection was being discussed which made me wary. I’m certainly no expert on Epinephrine, but a second injection within an hour was something I had never heard of. I was even more anxious than ever for the attending with her experience to be a part of the decision making process. A doctor rushed in who I recognized and who recognized me. She was the one with the friendly face who looked like someone I would be friends with if we met under different circumstances. Our eyes locked and I felt like she communicated in one look, “Oh Hi! It’s you…I know you…and Liam…what are you doing in here…what’s going on?” Our conversation was quick and urgent. “Where have you been?!?!” “I just got the page less than two minutes ago and ran here!” “This has been going on for a long time!” “I came as soon as I got the page!” “Make the pain go away…he’s in agony!” I really like this doctor and feel comfortable around her. We talked fast with each other but neither of us were angry, just trying to take care of Liam. I heard her make a request in a calm voice for some Morphine. Courtney ran from the room again. She wanted to know why his heart rate and pulse oxygen levels weren’t being monitored. The residents continued to stand in a wall of white coat silence. The doctor who had been dealing with us gave her explanation as to what was happening. Courtney came back into the room with the morphine and it was injected straight in the line. And finally, more than 35 minutes after the awful episode started, Liam got some relief. Within minutes, he fell asleep. The attending stayed focused on the situation. Liam’s face was still completely swollen but he was breathing well and his heart rate was down. I heard someone say that surgery had been called. I looked at the clock. His surgery time was quickly approaching. Then I heard that surgery was postponed. “Anesthesia won’t take the risk of putting him under when his throat was take him under these conditions.” I was crushed. If surgery was delayed until the next day, Halloween, he surely wouldn’t get out and would be celebrating the holiday he had been so looking forward to in the hospital. No. No. No. And then I looked up and there was Dr. Kramer. She had come to see what was going on and I was grateful to see her. I wanted to know what happened. Clearly it was a reaction to the vitamin K infusion. It’s very rare but one of the side effects was extreme abdominal pain. This is exactly why I wanted the attending in the room. My mother instinct told me the residents didn’t know that was one of the side effects so they let my son scream in pain and agony without relief for more than 30 minutes. Dr. Kramer left to return to the day hospital and start what I’m sure was going to be a long day seeing patients. Larry walked in which was a huge relief. We discussed with the attending doctor Liam’s situation, our concerns about rushing into surgery but also not wanting to take any risks, shared with her that Liam had been playing in dirt, he had a clean blood culture 10 days after he stopped taking antibiotics after his last bacterial infection, discussed his white blood cell count being back down to normal levels, and looked at how long it had been since he had a fever. There was a part of me that kept asking myself what I was doing…in light of the fact that it was the same bacteria and knowing how bacteria likes to cling to medical ports, it all seemed to make sense that this was a straight forward case. But I just couldn’t let go. She listened and then suggested that a consult with ID (infectious disease) would be prudent. Larry and I didn’t know that infectious disease could be called to consult on cases but we immediately welcomed the idea. In the interim, surgery was rescheduled for Friday at 12:30, the earliest they could accommodate us. She assured us that infectious disease would be back to us before the end of the day. We spent the rest of the day watching Liam like a hawk for any lingering effects. Liam kept asking us why his face blew up like a pumpkin. He wanted to understand what allergic reactions, a new term for him, were all about from what caused them to what happened to a body when it was having an allergic reaction. Later in the afternoon, one of the residents came to check on Liam. I am not proud to say that I felt like a mother lion not very willing to allow my child to be checked by a doctor who I was still angry with for waiting for what seemed like too long to me to get the attending in the room. She was not on my good list. Liam, though, seemed fine although still very puffy. He wanted to eat – a good thing – and spend time playing with the giant bottle of blue glitter in the “tiny playroom.” And most importantly, he had gone 24 hours without a fever…a very good thing. We were in the room and Courtney came in with some medicine to hang on his pole. It was Visteral…a medicine similar to Benadryl which make Liam sleep for hours at a time. It had been more than six hours since his allergic reaction and I didn’t understand why we were adding a new medication that would make him sleepy. I went to discuss with the resident who prescribed the medicine if it was really necessary considering it had been hours since his allergic reaction. It was the same resident I wasn’t happy with. The attending heard our conversation and said that Liam didn’t need it. There was a part of me that felt badly for the resident...she was in a losing situation with me because she lost my trust and confidence. I went back to the room and Fireman Tommy was there to visit his buddy Liam. The two of them were on their way to the playroom. Two women from infectious disease arrived. It was a fascinating conversation. Yes, the type of bacteria Liam tested positive for was the same kind he tested positive for on September 3rd. But, the type of bacteria is not one that causes high fevers like Liam had. It also was one that doesn’t typically colonize in a port. And it’s the same type of bacteria they were having contamination issues with and had even set up a task force to try to identify the source. They also reported that Liam’s second and third blood cultures were so far negative was another indicator to them that the first culture was a false positive. They felt the port was fine, it didn’t need to be removed and he should be taken off antibiotics and discharged. It took me a minute to understand what they were saying and the implications. Wait…let me get this straight…we probably haven’t needed to be here? And let me get this straight…if he hadn’t gone into anaphylactic shock from the vitamin K infusion he would have had a surgery he didn’t need to have? So, again, let me make sure I understand…he could have just been plain old sick just like a regular child? And then I made another realization…if this bacteria was the same one he tested positive for in September, then it was possible the scare we had and the two week course of antibiotics every six hours could have been avoided?? Really?? Oh goodness. OK…cue the mix of emotions. I wasn’t sure exactly how I felt…relieved that he didn’t need to have his port removed but frustrated that our three-week break had been interrupted. The resident caught up with the team in the hallway to get an update. I heard the team tell her the same things. I checked on Liam in the playroom with Fireman Tommy and all was good. I saw the attending sitting down near the reception desk reviewing patient cases with the pediatric fellow who was coming to relieve her for the night. I immediately recognized the fellow as one we knew and liked and who was always joking with Liam. The attending asked if I had seen the infectious disease team yet. I told her what they had told me and the resident who was standing close by confirmed my report. We discussed Liam’s discharge which would likely be on Friday just to make sure there were no lingering side effects from the vitamin K experience. While I was away Daddy cleaned up the tornado of toys that had swept through Liam’s small room and hung his Superman costume on the medical paraphernalia that serves as the headboard for the bed. We said good bye with a sense of relief of having dodged a bullet. A team of volunteers stopped by the room to decorate it with Halloween goodies. Liam was beyond thrilled and decorated every inch of wall and even hung a huge banner of carved pumpkins on the curtain that separated us from our neighbors. He jumped from his bed to the two-level cart of Halloween decorations picking out things and directing where they should go, all while attached to an IV pole. I saw Tori’s Dad just down the hall from our room and got an update from him. He looked good considering his 14-year old had been home about four of five days since being diagnosed on August 8th. I could hear Tori calling for her dad to come help her. The once talented athlete now can’t walk but she still has spirit. Her voice sounded just like any teenage girl’s voice slightly annoyed with her father.

The attending stopped by the room to say good night. We talked a bit and she suggested that just to be on the safe side, Liam not have anything to eat or drink after midnight in case something changed and he did need to go to surgery. I didn’t like hearing those words but fine, we’ll do it but in my head I thought, “he’s not going to surgery.” Liam and I went to bed and I woke up each time his vitals were taken during the night to make sure he didn’t have a temperature. Instead of having a high temperature, it was now super low, 95 degrees. The clerk came back several more times to check it and it stayed at the same temperature. And then I realized that his side of the bed was completely soaked with pee. The IV fluids overloaded his bladder capacity again and he had peed in bed. He was lying on his side and everything except the arm that was on the upside was soaked. And the blue plastic mattress made everything even colder. I had to get him up, take off his jammies, wipe him down with a wash cloth, try to convince him to be quiet so we didn’t wake up our neighbors, remove the sheets, wipe the plastic mattress with alcohol, make the bed and get him back in it. He waited for me in the dark curled up in the armchair in the room and complaining his feet were falling off the chair. And when he got back into bed and realized that his puppies and pillow and soft yellow blankie weren’t there, freaked. His favorite guys were all soaked, literally dripping, with urine and needed to be washed. With his permission, I took them to the laundry room on the floor for patients and their families and washed his favorite guys. Liam eventually fell back asleep but his temperature only rose a few tenths of a degree. As the first rays of sunlight hit the room, the nurse came in with a blood culture bottle. The fellow was concerned about Liam’s low temperature and wanted to take a blood culture. I dreaded that collection and asked that it be delayed until Liam was awake. Liam woke up and told me he was hungry. We went to the kitchen, he had a yogurt. He wanted a second yogurt. I gave it to him and as he was finishing up the second yogurt, I remembered he wasn’t supposed to eat or drink anything just in case he needed surgery. Oopsie. We went back to the room. He put on his Superman costume. There was Halloween excitement in the air with lots of hospital employees dressed up. Liam wanted to fly in his Superman costume but flying was difficult when you’re attached to an IV pole. I asked if he could be disconnected so that he could run. We got the OK. He flew around the race track circuit on the floor. He was full of energy. We moved to the playroom where he built a Superman fort. The resident came in to tell us that surgery called and they were ready for him. I told the resident that I was waiting to have a conversation with Liam’s team and the attending given the feedback from infectious disease oh and, by the way, he ate two yogurts for breakfast so he couldn’t go to surgery any way. It was a tense conversation. “What do you mean he ate?” “How could you think I was going to let him go to surgery without further discussion?” She left and came back to say they were waiting for one final test from infectious disease regarding sensitivity and what antibiotics would and wouldn’t work with the type of bacteria he tested positive for. A Halloween parade was forming. Liam bounded around in his Superman costume running back and forth past the parade of walkers and wheelchairs. He ran to the front of the line to walk with his friends from child life leading the parade. He collected candy. He squealed with excitement. He didn’t look like he should be there. But he was. We ran into two of the nurses from the POU, Sloan-Kettering's intensive care unit, dressed as bat girls. They called out to Superman Liam and told me they were anticipating seeing us yesterday. They had heard about the pumpkin head incident. Hmm. The resident told me they were approaching our room during rounds. We went back to the room and waited. There was a new attending on duty. I ran into her in the hallway and she introduced herself. And then she told me the antibiotic sensitivity was back from infectious disease. The findings were that the two antibiotics Liam was being given would not work with the type of bacteria he tested positive for which seemed to confirm the theory that the first blood culture was a false positive. I stood there shaking my head. I was happy, of course, to hear this but so disappointed for him that we had to take this roller coaster ride, miss three days of school, and lose precious hospital-free time. Her feeling was to follow the recommendation from infectious disease. But, because Liam did have a high temperature and a high white blood count, she felt the prudent thing to do would be to send us home on antibiotics. I asked her if it was an IV antibiotic and thankfully she said no, it came in pill form. We were out! It was 2 p.m. We packed up, left the hospital wearing his Superman costume, went home, dropped off our bags, and went straight to the Halloween party at Apple Seeds where Ella was attending dressed as a witch. As we walked in, Ella was in her stroller on the way out. We all reunited with lots of hugs and laughs. That is how quickly we went from one world to the other. Liam played, reveled in being a kid, and had fun. We moved into a room where a concert was going on and sat in the front of the room. Liam and Ella divided my lap. The singer sang. Ella danced. Liam kept running to the back of the room to get cups of pretzels. He ate nonstop. The singer asked if anyone wanted to help him sing. My son who melts with stage fright during school recitals, jumped up first and went to the singer. He took the microphone and sang clearly and loudly the alphabet song. That’s my son.

A note to my son: Liam, in 20 years when you’re reading this account of what happened this week I want you to know how proud I was of you and how disappointed I was that you had to do hospital time. You are my hero and you once again made the best of the situation. You always do and for that, I love so, so, so much.

A note to my daughter: Ella, in 20 years when you're reading this account of what happened the week of Halloween, know how much Liam and I missed you and talked about you. Nothing was right without you with us. You are the sunshine and I love you so, so, so much.

Rip Tide

2008-10-31T05:40:00.000-04:00

October 26, 2008
Rip Tide.

Too many years ago when I was in my early 20s, living in Virginia and going to the Outer Banks beaches as often as possible, I had an experience with a strong rip tide that scared me to the point that even today I’m still extremely cautious about swimming in the ocean. On a gorgeous September day, my favorite beach girlfriend and I walked to the beach from the lime green cinder block house we had rented with the requisites in our beach bags: Diet Coke, Pennsylvania Dutch style pretzels, books, Walkmans (this was well before the age of the iPod), baseball hats, sunscreen, towels and beach chairs. We were the kind of gals who spent the entire day, until the sun set, on the beach. We didn’t turn our chairs to face the sun, we put our chairs in one spot and let the sun rotate around us. We liked going to the beach in September because there were very few people on the beach during the school year and we were “serious” beach goers who liked peace and quiet. On one of our beach days, I took a swim by myself to take advantage of the warm ocean temperature. As I floated along, watching porpoises jumping off in the distance, I noticed I was drifting out and away from shore a little faster than I expected. I started swimming back to shore and quickly realized I wasn’t getting anywhere. I tried harder. And harder. I started to panic and swam as hard as I possibly could. But the harder I swam, the further from shore I seemed to be. By the time I realized I was trying to swim against a rip tide, I had used up most of my energy. I could see my friend on the shore sleeping with her book on top of her face and all of the sudden felt quite alone. I realized I could drown and no one would know. I could just be swallowed up by the ocean and literally no one would realize. OK. OK. Think. Calm down. A rip tide can be overcome. Start swimming along shore. Don’t try to reach it…just keep it in sight. Relax. You’ll get there. And eventually I did arrive on shore with my beach chair so far away I couldn’t see it. But I was on shore and grateful. I sat on the sand, exhausted, looking out at the water and shivering. Just writing about the experience, which happened more than 15 years ago, makes my heart race and the blood in my body feel like it’s draining out. It was that strong of an experience.
Liam’s return to 3F8 treatment felt like a rip tide. From the onset of pain on Monday until Saturday night at 10 pm, it was nonstop moaning, groaning, vomiting, “Mommy – Hold me!”, “Mommy – I need another little white pillow” (what Liam calls Dilaudid which I’ve heard is stronger than Morphine) week of owies, fasting, and wanting to be curled up in a fetal position in the dark. In the more than 20 months since Liam was diagnosed, he has never asked for a pain pill. He begged for them this week. He begged me to show him where the hands on the clock needed to be, even though he could barley focus on anything from all of the narcotics, before he could have another “little white pillow.” His hands and feet tingled in an intense pain that is similar to when a body part falls asleep and starts to wake up but intensified exponentially. “Rub me,” “Don’t rub me.” “Rub me softly,” “No, rub me quickly…faster, Mommy, faster.” “Don’t rub me there.” “Rub me here.” “No, not there, here.” “Mommy – It hurts!” Daddy was pretty much rejected all week. Ella was not even allowed in the same room by Liam’s decree. Liam would wake up in a panic in the middle of the night that he was going to wet the bed and tell me to carry him “quickly, Mommy, quickly!” to the bathroom where I would have to place him on the toilet and then stay close enough for him to rest his head on my shoulder. His pee had the worst smell to it all week. One night he saw grandma sitting on the ceiling next to his cup of water. I had to stand on the bed, reach up and grab the cup of water in order to appease him. After Monday’s breakfast, he didn’t eat. And when I say he didn’t eat, I mean he didn’t eat…a thing…nothing. Everything he put in his mouth tasted bad…a side effect of the narcotics. He would try something and then cry in frustration when it tasted like medicine. He would brush his teeth in bed over and over and over again using two cups – an empty one to spit in and a one with water for swishing - to try and make the taste go away. He would brush and then try eat something and then cry because it still had the “medicine taste.” He didn’t want to drink because he was afraid it would make the owies in his tummy worse or it would make him throw up. By Wednesday his glucose levels were so low that I was encouraged to give him sugar on a spoon, which he ultimately refused but allowed me to give him a few bites of ice cream which he declared was icky. We also started 24-hour doses of intravenous Zantac to protect his tummy from all the acid in it and alleviate the new feeling of discomfort. “Mommy – my tummy feels funny.” “Is it owies?” “No – it’s not owies, it just feels funny.” It was a really, really hard week. It was hard not to get upset at the people who would peer into Liam’s stroller as I was trying to catch a cab or shuttle him to/from the apartment to catch a peek at the child who clearly was too old to be curled up in the fetal position. I tried to ignore their stares at the bald headed little boy with the puffy face, but I saw every one. I hated it. I just wanted to protect my son. I wanted to jump out of the cab when one driver kept turning around while driving to stare at Liam. I finally had to ask him very firmly but politely to please keep his eyes on the road. But Liam’s spirit, as always, couldn’t be dampened. Even in his narcotic haze, he would tell me in a very weak sounding voice to go to the other corner to catch a cab because I’ll have more luck. He wanted to make sure the cab driver was going up 1st Avenue or the FDR to avoid traffic because traffic would “make us late for the hospital.” He wanted to be carried everywhere. I had to lift him from the stroller and place him in the back seat of the cab as gingerly as possible as he grunted and moaned. He wanted his eyes to be shaded. He didn’t want the TV on. He didn’t want any noise. He just wanted to be quiet. All week we could see the shore. We knew it was there. We just needed to let the tide float us along until we could get back on solid ground. Liam’s shore was school. My shore was to see him being himself. It was agony watching my little boy listless and in pain. It made me feel like the worst parent in the world for putting him through it but also grateful to know he was receiving precious antibodies that there never seems to be enough of for all the children who need it. And in the morning when it would be time to go to the hospital, Liam never once said no, he didn’t want to go or complain. Instead he would want me to keep him posted on how long it would take me to get ready and encouraged me to hurry up. The best part of the week was not having to do a shot on Friday morning. His ANC level (the type of white blood cells that are the fighters) was so high he didn’t need the 10th shot. But by Friday, he was so exhausted and out of sorts I’m not sure he even cared.
We’ve spent the last week on shore recovering from the experience and grateful to be on solid ground. We haven’t talked once about the hospital and have immersed ourselves in “normal” – being an exuberant preschool student and loving brother with a hint of mischief. Liam’s hair seems to grow in front of our eyes which excites and delights us. We were very grateful that his eyelashes didn’t fall out from chemo like they did last time. This time they didn’t fall out until there were new ones underneath to push them out. So right now his long, luxurious eyelashes are teeny, tiny little eyelashes…but they’re there which is all that I care about. Larry and I are in endless “catching our tail” mode working during the day and then a second shift at night. The night shift is reserved for Cookies for Kids’ Cancer work and reading cancer research news. There’s never a night one of us and most of time both of us have our computers out working. We’re going to do holiday cookies again, but this time have committed to 120,000 cookies vs. the 96,000 we did last year. (Anyone looking to not only be a good cookie but give a good cookie this year for everyone they know? Remember…they’re tax deductible!) So for now, we’re enjoying the respite and trying to live, as always, as much in the moment as possible and enjoy our time on shore.

Wait - Haven't we been here before? Day 1, Round 1, Second Go at Antibodies

2008-10-13T22:13:00.000-04:00

My lost post vanished into cyberspace so now I need to be very brief so that I can get back to some pressing work.

Today was the first day of antibodies, Revisited. The day started with an 8:15 a.m. arrival at the hospital, we left at 6:15, and at 10:15 p.m. Liam is uncomfortably resting on the couch curled up with his Batman blanket (thank you Martha and Sisters), super soft yellow blankie, puppies and pillow. He's in extreme discomfort and has taken the max amount of pain killers he can take until 2 a.m. He's grunting, moaning, yelping, whimpering and crying. OK. This is hard. There's nothing I can do to relieve his pain except whisper to him that the pain medicine should be working in just a minute.

The day has had all the usual assaults on the body and senses associated with a first day of a new treatment at the hospital including finger stick (which requires negotiating and then restraining), accessing his port(which involves negotiating and restraining) and hearing the agonizing cries of other children as they deal with whatever their treatment is calling for on this particular day (which involves lots of explanation to Liam's questions about why other children are crying). Remind me again why we spend so little money on children's cancer research? Can I please ask the share holders of pharmaceutical companies if they would want the same pharmaceutical companies looking for cures, even if those cures wouldn't ever be multi-million dollar profit centers like other drugs or if they would want those companies to continue to turn a blind eye to all children? OK. OK. Fine. I'll stop. In the interim while I take care of my baby who Ella is so worried about, visit the Cookies for Kids' Cancer website (www.cookiesforkidscancer.org) and plan a bake sale.

Day 1 sort of over. Four days left.

Liam and His Guys II

2008-10-10T10:17:00.000-04:00

I'm working on an update but everyone should feel good about where we are right now. Liam's looking great and doing great. He is beginning a week of antibodies on Monday, 10/13, which probably means he'll miss a week of school which is a bummer. The good news is after a week of antibodies, he'll have a three week break. (Three whole weeks off from the hospital...what will we do?!) We've started the daily injections that are part of the process, something he understandably despises receiving and we hate giving. While I finish up the next update, which is tentatively titled "Am I coming or going?" to reflect the crazy nature of our lives in recent months, we wanted to share with you a very special picture that was taken two days after Liam's surgery in mid-July. Liam's "guys" are such an integral part of our lives that at this point they're family. We love them and their support. When I look at the picture, I realize how much I miss his hair. I miss it so much it hurts. But what I also see is Liam's spirit shining through which makes my heart smile. Today he had a play date with Taber, a little girl in his class with long, beautiful brown hair. Taber is a new friend and equals Liam on spirit and energy, something I didn't think possible. As I was playing hide and seek with Taber, Taber's Mom and Liam and listening to squeals of anticipation and delight, just for a moment I felt "normal" and like a mom instead of a warrior mom. I don't want to be a warrior mom. I really don't. I just want my son and I don't want any more pain for anyone else. Leave the pain for adults. Let's protect our children from pain as long as we can.

I’ll be loving you always.

2008-09-30T10:23:00.000-04:00

Note: I’ve been trying to finish this post for too long, but the super-warp speed that is our norm cranked up a few notches with the start of school for BOTH of our sweet babies, an unexpected and hastily scheduling of scans and bone marrow tests, radiation simulation, radiation practicing and then the beginning of 11 days of twice daily radiation sessions before and after school. Our apologies for keeping people hanging. We are always trying to keep the balance of our responsibilities to Liam and Ella in check with hospital time, work commitments and philanthropic activities. There’s never enough time in a day and days are never long enough. But even with days that seem to be moving at the speed of light, we very consciously try to savor each and every smile, discovery and ordinary moment like enjoying a bowl of ice cream or using flash lights to look for toads and crickets in the dark.

September 10th

We’re home! We’re home! Liam’s white blood counts shot up from 2.2 at 5 a.m. on Tuesday morning, to 5.6 when we drew his blood for a CBC at 8:20 p.m. that evening. Adrienne, Liam’s incredibly sweet and competent evening nurse, was so excited for us she tracked us down in the playroom to let us know about the jump. I wasn’t surprised. I had a good feeling it was on the way up. We knew that with a white blood cell count that high his absolute neutrophil count (ANC) would probably reach the golden .5 mark, our ticket out of the hospital. We waited. Liam talked about how much he wanted to go home. He kept telling me, “Duck Puppy and Monkey Puppy really want to go home. They hate being here.” Yes, dear Liam, I hear you. You hate being here. I know. I know. I’m trying to make this as bearable as possible, but I know it’s not where you want to be spending time…precious time.

It was the evening before the first day of school. Liam desperately missed school and talked about his friends and his beloved teachers almost every day. One of the activities that got us through the slow tick of a hospital clock was looking at pictures of his school year and classmates. He would tell a story about each and every person but they all ended the same way, “I love him” or “I love her.” He adores school and I wonder if one of the reasons is because it’s a completely different world than the hospital world and it’s a “safe place” for him without any “pillows” (aka pills), shots, or finger sticks. I also, though, think it has to do with the fact that it’s consistent. In the hospital world, a child Liam plays with one day will probably not be there the next because of different treatment schedules. There are no solid relationships with other children that can be formed which can be challenging for a child who is at the stage of learning some of the key developmental milestones. He craves consistency and that is something he found at school. On the day Dr. Kushner presented the roadmap of what Liam’s treatment would entail after his July 18th surgery, we asked him if Liam would make his first day of school. He said it was doubtful but that he’d probably make it within the first few weeks. I made up my mind that day that we were going to do everything possible to get him there on “opening day.”

Adrienne called the lab to speak with a tech who was manually counting the number of absolute neutrophils to let her know we were waiting. Yes, in this world of automation there are still some things done manually…like counting precious neutrophils…one by one. We waited. Finally, finally…after eight long days in the hospital we got the news we had been waiting so many hours and days to hear….his ANC was .8 and we could go home! (Cue the fireworks and pop the champagne corks!) As we were going about gathering things, we saw Linda who is one of the nurse practitioners on the neuroblastoma team who works over on the Day Hospital side. It was late…about 9:30…and Linda had been at the hospital since the morning. Even though she had put in a very full day, it wasn’t surprising to see her late into the evening. Everyone on the neuroblastoma team works insane hours and of course Linda would be there after 9 p.m. checking on a patient on the sleep over side of the 9th floor. She asked if we were doing “the balls” when we got home. Me: “The what?” Linda: “The balls to give him Vancomycin at home.” Me: “The balls? No one mentioned them to me.” Linda: “They come from home health care. Do you have home health care set up yet? If you’re going home, you have to have them set up so they deliver the Vancomycin to your home.” Me: “Home health care – I’ve never heard of it and don’t know anything about it.” OK – Cue the scratching of a needle across a record and recork the champagne bottles…clearly there was a communication breakdown. Because of his positive blood culture for bacillus, he needed to stay on a 14-day course of IV antibiotics that are administered every six hours over the course of an hour. Arrangements need to be made well in advance of a patient’s discharge to have the medication and all of the paraphernalia that goes along with it timed to your arrival home. Home health care includes a visit from a nurse who instructs how to deliver the medicine, flush the line that goes directly into Liam’s heart, the proper way to Heparin lock his port, and other instructions on what to and not to do.

Both Liam and I were crestfallen. Liam kept asking over and over, “if I have lots of white blood cells, why can’t we go home?” After all that work, he was going to miss the first day of school.

We spent one last night in the noisy room. After seven nights, we developed a forced rhythm of respect with our neighbors, although it was a treaty that could be broken at any time.

Wednesday morning and the first day of school, but also the day we were scheduled to meet with the radiation oncologist for an exam and needed to get the home health care arrangements set. I didn’t tell Liam it was the first day of school. I didn’t want to disappoint him. The radiation oncologist’s fellow, Leslie, came to examine Liam. The exam consisted of identifying the tattoos on his stomach and sides, the ones Liam thinks are freckles, and then going over the game plan of what was going to happen which was a conversation reserved for the hallway. We talked while Liam patiently bided the time by watching Bob the Builder. The radiation oncologist, who I last saw at a pediatric cancer fundraising event held at FAO Schwarz in March, joined the meeting. The discussion included talk about how radiation permanently damages kidney tissue and that this was a second pass of radiation for Liam’s already damaged right kidney. Kidneys can function with only 1/3 of their capacity so the thought is that the kidney will still be functional. But, I was reminded for the umpteenth time that people can live with only one kidney. (I know, I know…but it’s not what I wanted for my baby boy at such a young age.) Liver tissue will be hit by radiation beams because a small portion of the liver is in the radiation field. Luckily liver cells regenerate. (OK – I can handle this.) But the most important information learned during the meeting was that the 1 cm x 1 cm spot of 95 percent “junk” with a very few cancer cells in the center was NOT in the original field of radiation. This was huge news and not what we had been told back in July. I asked her to look at his chart and be sure, absolutely sure. She did and she was. This was HUGE news and much, much better than finding out the unwelcome visitor was in the original field of radiation…which would indicate his original dance with radiation didn’t work. We ended our conversation and finally…finally…after eight very long days and nights in the hospital we were free to go home…after his noon dose of Vancomycin

When we finally left the hospital 1:30 p.m., Liam and I stepped out into the fresh air on a perfect September day and reveled in the feel of air swirling around our faces and the warmth of sun on our cheeks. There is nothing quite like being outside. It’s nothing short of glorious. You realize how air outside smells like air…not air that is cleansed and purified. There’s also nothing quite like leaving the world of beeping pumps, small rooms and the smell of fear behind. The specter of death is way too close for comfort on the 9th floor.

In the cab on the way home, Liam leaned his head back on the seat, asked me to open the window, closed his eyes and felt the wind on his face. He was very quiet and I could tell just grateful to be out and on his way home. We were home for less than two hours before having to go back to the hospital for his next dose of antibiotics since home health care wasn’t arriving until 9 p.m. All of the sudden I started realizing that administering antibiotics for an hour every six hours might seem like no big deal, but it was going to be a huge time drain. While we were at the hospital receiving the 6 p.m. dose, we ran into one of his doctors who asked if scans had been scheduled. They hadn’t but I had a feeling they would be shortly.

And now is when the schedule gets really crazy.

Wednesday, September 10th – Monday, September 15th
Antibiotics every six hours at 6 a.m., 12 p.m., 6 p.m. and 12 a.m. Each dose was a two+ hour process of taking the ball-shaped dose of antibiotics that was pressurized to push the antibiotics in without a pump out of the refrigerator an hour before to get to room temperature; hooking up the antibiotics to Liam’s port at the appointed hour which was always a nerve-wracking experience knowing the importance of cleanliness and preventing air bubbles from entering his central line which could cause irreparable damage to him (I’m not even going to mention what could potentially happen but it’s not good); disconnecting him after all the antibiotics were pushed into his line which sometimes took an hour and others an hour and a half if he rolls over on the line while sleeping; cleaning the port and then flushing with saline; and cleaning the port and “locking” with Heparin to keep the port open and ready to access six hours later. During the midnight and 6 a.m. doses, I got to the point I could do it so stealth-like that he would rarely wake up. During the noon and 6 p.m. doses, Ella would often serve as the antibiotic ball carrier so that Liam could do whatever he wanted to do without being restrained. At one point Liam discovered his scooter was an excellent transporter of not only him but also the antibiotic ball, a discovery that we quickly curtailed with the fear of him falling and ripping the line out of his chest.

Thursday, September 11th
Liam’s first day of school. He missed the true first day but was there on the second. And as we walked in with all the other preschoolers buzzing with excitement, I was nervous for him (would anyone notice his lack of hair and if so, would they say anything?) and stuck in the significance of what a triumph it was for us to even be there. I tried to shed the hospital skin I’ve been wearing since July 18th and put on the mom of a preschooler skin. It’s never an easy transition and we’re still in the midst of intense treatment so I’m not sure I really can do it. I can’t tell if this year is easier because I’ve already been through the awkwardness of the first day and days of school and know the routine, or harder because Liam’s bald head make him stand out and turns heads. (So much for blending into the crowd.) And of course you want to tell people the hurdles that have been overcome just to do something as simple as say “Good Morning” to teachers and classmates, but it’s not information I would volunteer unless asked and then if asked have to quickly asses how much information I should give someone without overloading their senses.

From Liam’s perspective, it was a glorious day to see his friends from last year, his teachers and be back in his “safe zone.” I was worried his friends wouldn’t recognize a bald-headed Liam. No one had any trouble identifying him which might speak to the bubble of enthusiasm that surrounds him.

Friday, September 12th
Ella’s first day of preschool. Ella and Liam went together and Liam was very excited and protective of his little sister. Ella was a model student, as we all knew she would be.

Monday, September 15th
The 6 a.m. antibiotic dose was the last one, a very good thing. It was exhausting. After school was a trip to the hospital for radiation simulation. Liam underwent X-rays and a CT scan (I believe it was his ninth) to give to a physicist who does whatever a physicist does in order to figure out how to point the very powerful radiation beams at a very small area nestled between his kidney and liver to zap any remaining sneaky bastard cancer cells that escaped two rounds of high-dose chemo. And then we had to make the mold that would help hold him in place during radiation where he has to be perfectly still. Two liquids are mixed, shaken to a look and consistency similar to pancake batter, poured into a giant plastic bag and then spread out on the glass table of the radiation machine so that the liquid is about 1/8” thick. Liam was asked to lie down on the plastic bag with his hands above his head, something he was reticent to do but finally did, and be still. Within minutes, the concoction warmed up and started growing all around him. And within 10 minutes, there was a mold of Liam’s small body from his waist to his head. He was fascinated but also a bit hesitant. I hadn’t done a good job finding out what was entailed with getting a mold of his body so I didn’t have time to prep him. He doesn’t like surprises. My bad. As a reward, we took the subway home which he loves.

Tuesday, September 16th
An e-mail arrived from Kristina in Dr. Kushner’s office with the schedule for his CT scan, bone marrow tests, MIBG injection and the nerve-wracking MIBG scan. All the tests were Friday and Saturday. This set of scans represents our new starting point and when the five year clock once again starts ticking. From here out we need to get to five years before we can breathe easy. Five years. 60 months. OK. Let’s go. Start ticking.

Thursday, September 18th
A trip to the hospital after school for radiation practicing. Larry and I have our doubts as to whether Liam can stay still. There is a flurry of e-mails with Child Life to discuss strategies for how to prepare Liam for this experience. The thought of the guy on the move having to lie perfectly still in a room by himself while red lights line his body including straight down his face, a camera rotates around him and the machine makes a loud ticking noise This is a new experience for Liam since the last time he did radiation, it was under anesthesia. More on radiation, take 2, later.

Friday, September 19th
An early morning arrival and full slate of activities – Access his medical port with the scary-looking 1-inch that pierces his skin to reach the port, bone marrow procedure (this is the one where bone marrow and samples of bone are taken from four sites in his pelvis), followed by a CT scan, followed by an MIBG injection. Doesn’t sound so bad, right? The tricky thing is the timing. The CT scan requires drinking 8-ounces of apple juice laced with contrast at least one hour prior to the start of the CT and the MIBG requires having swallowed the awful tasting pure iodine drops at least two hours before the MIBG injection of radioactive dye in order to protect his thyroid. Timing is critical and a two-hour delay to the bone marrow procedure meant forcing a groggy 4-year old just waking up from anesthesia to drink something he doesn’t want to (he knows all about contrast) while checking your watch every few minutes to make sure you also get the iodine drops in by the required time and dealing with anesthesia demands. Anesthesia makes Liam do some weird things. On this day, the weird thing was insisting with a crying fit that I remove the pressure bandages that were covering the four sites on his pelvis. These are the same bandages that have also remained in place for five weeks when he is convinced they need to remain in place until they literally fall off his body. So we’d take a sip of contrast, and I’d rub the bandages with the adhesive remover for a few seconds, sip, rub the bandages with adhesive remover…his turn, my turn until he had consumed all the contrast and I had carefully removed all the pressure bandages while making sure none were still bleeding.

We arrived at 7:20 a.m. and didn’t leave until after 4 p.m. As Liam would say, it was “no fun. No fun at all.”

Saturday, September 20th
We arrived at the hospital at 9 a.m. for his MIBG scan. This is the super scary scan that lasts almost two hours. The normally bustling waiting area with varying degrees of worry on people’s faces was dark and quiet. Benson the technician was waiting for us. Liam was the only patient in sight or sound. We passed by the interpretation room that is usually filled with doctors reading scans of patients of all ages and stages of disease but today it was empty. The room with the MIBG scanner was darkened. Because we were doing a scan on a weekend and the pediatric day hospital was closed, he wasn’t able to receive an IV dose of medicine that tends to make him drowsy. We gave him a pill version of the medicine, but in the past it hasn’t done much of anything. This would be the first scan Liam went through without a little help of some sleepy medicine via IV and it would be a big test. Could he do it? Could he stay still while a 3’ x 3’ plate was within inches of his face? Could he stay still while two plates were positioned on either side of his body as the stretcher inched past the plates. Could he do it first thing in the morning when he tends to have the most energy? He hopped up on the table with duck puppy, big puppy, monkey puppy, little puppy and his two newest stuffed animals that have joined the posse, placed his head on his beloved elephant-shaped pillow and declared that he was ready. Two rolled-up towels were positioned on either side of his head and taped across the top to help him hold his head still; his arms were positioned next to his body and he was reminded not to move them even to subconsciously play with his two favorite loveys, duck puppy and big puppy, which he holds in each hand during the scan; and a 2-foot wide Velcro belt was strapped across him to hold him in place and serve as a reminder to stay still. He started shivering even with super soft yellow blankie covering him. Benson brought him a heated blanket. He said he was warm and that we could start. He did beautifully, through three quarters of the scan. And then he started having a hard time. He was fidgeting. He asked me to rub his head. He couldn’t get comfortable. It was becoming extremely difficult and Benson kept coming in and rechecking Liam’s position to make sure the test would be OK. And finally, finally…it was over. As we unstrapped Liam and let him sit up, I put my hand on his back and found that it was completely soaked. The back of his head was dripping with sweat. His pillow was soaked. No wonder he was fidgeting – he was hot and sweaty! He was supercharged with pent up energy and wanted to see his picture. Benson went over to computer in the room to pull up the scan. Liam stood perched on the top of a hard drive studying the picture. I nervously looked at it hoping I didn’t see anything lighting up which shouldn’t be lighting up which would indicate cancer. The salivary glands along his jaw were glowing…that’s OK…the thyroid was glowing…that’s OK…the area near his port was glowing…again, OK…and then as we worked our way down his body I saw a small spot glowing near his right kidney, the site of his surgery. I quickly asked Benson what I was looking at. He didn’t really answer me. I asked him what it was. He said he didn’t know but that’s why the radiologist who read the early scan ordered another view be taken. I could feel the bile coming up my throat. I urgently but not too urgently asked Benson what it meant. He replied in his sing-song voice and chipper accent, “It might be nothing.” Whoa…what do you mean “might?” Might? Might? I felt my knees turn to Jell-o. I wanted to run to the radiologist’s office and have him or her tell me right then and there what I was looking at. I tried to reason with myself and managed to pull myself together enough to seem calm around Liam who was thrilled to be looking at a picture of his inside body. We left. I e-mailed Dr. Kushner from the cab knowing he works almost every weekend and that he would certainly see my e-mail. I kept trying to reason with myself, but it was really hard. We arrived home. Larry asked how it went. I told him. He started to do the same thing I was doing…it couldn’t be…but it could be…it had to be something else…but it might not be. And while we were both confident, it was still unnerving. I kept checking my e-mail all weekend. No response on Saturday. No response on Sunday morning. No response on Sunday afternoon. OK, was he not getting in touch with us for a reason? Was this the one reason he wasn’t in the office? Was he totally annoyed at me for acting like a paranoid mom and was too irritated to respond. Was he waiting for a second opinion on Monday morning? Was he waiting until the weekend was over before contacting us? It was a real mind-over-matter experience but by Sunday evening with no response, it was becoming an exercise in torture. We were both becoming stressed playing the waiting game. Finally, finally Monday morning arrived and we knew we’d have a response. Monday morning came and still no answer, even though we know Dr. Kushner arrives early. I dropped Liam off at school. No answer. I went outside with three of my non-cancer mom friends who encouraged me to call him. I did and got one of his assistants. She took a message and told me she’d have him call. Still no answer. School was over at noon and still no answer. Liam ate lunch. No answer. He took a nap before having to head back to the hospital for radiation simulation. No answer. We hopped in a cab to go to the hospital. An e-mail popped in from Dr. Kusher. Should I open it? Do I dare when I’m alone, with Liam, on my way to the hospital. I had to know. I needed to know. I opened the e-mail. It read, “It was nothing. MIBG negative – no NB. EXCELLENT.” OK. I can breathe again. I kissed Liam’s head over and over and over and blinked back the tears.

During our time in patient in the noisy room, we discovered that listening to music helped him to fall asleep at night. True to Liam spirit, he wanted me to be a part of the experience so he insisted that we share the headphones. We’d be lying on our sides, face-to-face so close that our noses would almost be touching so that we could share the headphones. I’d scroll through the songs and he’d shake his head yes or no if he wanted to listen to it. It was a series of no, no, no, no. And finally he heard a song he liked. The song was “As” by Stevie Wonder. And from that night on, he wanted to listen to that 7+ minute long song every night because, as he put it, it made him think about me, Daddy and Ella….that he’d love us always. Now, go look up the song lyrics or listen to the song and know that I’ll be loving you always for being there with us.

Liam loses a friend, the world a scarlet haired princess

2008-09-09T12:04:00.001-04:00

Today is one of the saddest days we have experienced since we started this journey over a year ago. Jessie Garren, the lovely teenage girl who became Liam’s dear friend and whose family has come to be close friends of ours, lost her battle with cancer last night. Jessie’s spirit and faith were beyond compare and the grace with which she faced her disease as a young woman was an inspiration to all who knew her. Our hearts are heavy and we wish her family our love. We know their faith will carry them on as will the peace of knowing that there is a loving, caring, adoring, young angel watching over them from high above. We love you Jessie.

Here are a couple of posts from last year related to Jessie
MARCH 20th 2007
He has a girlfriend, Jessie. She and her family are here from NC for treatment. (www.caringbridge.org, click on "visit a website," type in jessiegarren...with no space between the first and last name. Jessie and Liam made an instant connection when they met when they were both in patient. Now both are undergoing out patient treatment. We love Jessie. Liam loves to hold Jessie's brother's hand. Whenever Liam sees Jessie's brother, he insists that he holds his hand and participate in whatever activity he's doing. Last week they watched the movie "Cars" together.
MARCH 14th 2007
Liam has a friend name Jesse who I will guess is about 15 years old. She is a sweet young girl with beautiful red hair who like Liam seems too young and too cute to be so ill. She made Liam several gifts today, one being a star that states “Liam is a Super Star”. Jesse is fighting cancer as well and has been in a great amount of pain but today she found the strength to reach out to our dear 2 year old son who in turn rewarded her with one of his coveted popsicles. I think Liam and I will make Jesse a glitter card tomorrow to cheer her up even though I have a major aversion to glitter.

Things One Never Thinks About

2008-09-06T13:21:00.000-04:00

We all know that our bodies are constantly exposed to bacteria, but for those of us with robust immune systems we rarely give the constant contact and potential invasion a second thought. For a person with a compromised immune system, like Liam’s is from harsh chemotherapy drugs, danger lurks literally everywhere from microbes that like to hang out on human bodies to every doorknob and every sneeze within a 100-foot radius. It is a small miracle we’ve avoided infections since we’ve been on the journey. I can’t even begin to imagine the daunting number of blood cultures that have been done on Liam’s blood since February 27th, 2007, but it has to be in the hundreds. A blood culture bottle is shaped like a Tabasco sauce bottle that’s 25 percent filled with what looks a balsamic vinegar combination that’s heavy on dried herbs. We’ve seen so many of these bottles and every time every blood culture has been negative, until this time. It figures, our last round of high-dose chemo and he gets a positive blood culture.

Last Thursday, August 28, Liam finished his 2nd round of his 2nd time around of high-dose chemo. On Friday, we went back to check his blood counts and were surprised to find he needed blood. Of course we knew he’d need blood at some point, but we didn’t expect he’d need it that soon. But then when you start thinking about the number of vials of blood that are taken from him during the four days of chemo (at least five a day) to check every aspect of his blood and the volume of fluid he received intravenously all week to keep him hydrated and protect his organs from the toxic effects of chemo, it’s not surprising. So, we “tanked up” on some red blood cells for the weekend which came courtesy a volunteer who donated directly to Liam. (Thank you donor.) It’s a long process – about six hours – to receive a blood transfusion so a quick trip to the hospital becomes an all-day affair. But the good news coming out of the visit was that Liam could finally be untethered from the cumbersome adult-size backpack filled with fluids, pump and extra battery that has followed him around since Monday. On our way home from the hospital, we saw Ella out for a stroll with two of her baby dolls and her ever-present Kenyan companion, Mena. Liam and I yelled out the cab window to Ella. She heard our voices but didn’t see us at first and frantically searched car windows looking for us. When she finally saw us, she screamed with delight and excitement and couldn’t wait to see us. The cab pulled up in front of our new city home which is four floors above a sushi restaurant, the driver started taking the various assortment of bags of toys, my traveling office and other goodies needed to get us through a day at the hospital and Ella and Mena stood ready to greet us. As soon as Liam emerged from the cab and Ella saw he was without the blue backpack emblazoned or maybe marked like a Scarlet Letter A with the Memorial Sloan-Kettering logo, she screamed with delight – “LIAM – YOUR TUBIES ARE GONE! YEAH! LIAM – THE BACKPACK IS GONE! THAT’S GREAT LIAM! GOOD JOB LIAM!” If only the people bustling by us to get to their important destinations had any inkling of the significance of the reunion between a free brother and adoring sister. It was an amazing scene the immediately brought tears to my eyes knowing that Ella is so aware.

We had a great Labor Day weekend in New Jersey of swimming, picking tomatoes, hanging out in a huge tent that sleeps seven erected in the yard, watching Liam and Ella play with their treasured marble collections, cheering Liam on as he rode his super-fast Harley Davidson Big Wheel-esque bike complete with long handle bars and a chrome fender to protect the front wheel, creating impromptu science experiments, taking baths and showers (two things that can’t happen while he’s connected), eating together as a family in the dining room at Liam’s insistence (the child who could care less about food is insisting we eat together as a family…what’s wrong with this glorious picture?), shopping for big girl underwear for Ella since she is officially out of diapers and most pleased with herself (she is now the very proud owner of a collection of underwear adorned with Dora, Curious George, Minnie Mouse, Daisy Duck, Hello Kitty, and Disney Princesses), we came back to New York and back to reality. It’s never easy leaving our home in New Jersey. You always feel like you’re giving up a little bit of innocence and the transition from one life to the other is never easy. But you savor the good moments and the addition of memories.

Tuesday was a blood check day. Liam, ever the more aware patient, wanted to know exactly why we were going to the hospital, what was going to happen and how it was going to happen. Me: “Honey, they need to check your blood to make sure you’re eating and drinking.” Liam: “Where are they going to take the blood from?” Me: “I’m not sure.” Liam: “Is it going to be from my finger or the big-boy tubie?” Me: “Honey, I’m really not sure but you need to prepare yourself that it might be from the finger.” Liam: “You mean a finger stick, Mommy?” Me: “It might be honey. Unless you want to do it the other way and put a needle in a vein in your arm?” Liam: “No Mommy, I think I’ll do the finger stick because it’s much more faster.” And then there’s Ella who we have to worry about. Mena: “Mamma Liam, can Ella and I go to Apple Seeds today?” Me: “Hmm. Probably not a good idea since Liam is likely at zero white blood cells.” Mena: “So no park, no Apple Seeds?” (Note: She says with hesitation knowing how much Ella loves Apple Seeds, her playground paradise.) Me, with regret in my voice: “Yes, Mena, no Apple Seeds or public places for Ella until Liam’s immune system recovers. And don’t forget to use lots of Purell and have her wash her hands a lot.” Luckily he didn’t need blood or platelets, didn’t have a temperature, but as expected was officially at 0 white blood cells. OK. Batten down the hatches…we’re back into hibernation mode. Good thing Liam and Ella are buddies. They’re, once again, going to need each other for companionship and comic relief.

Wednesday seemed to be going fine but, as anyone who keeps up with us knows, Liam got a temperature which is an instant admission. His temperature hovered for hours in the range of above 100.4 (the maximum temperature to win a trip to the hospital) but below 101 (when we start to get nervous) so we didn’t rush to get to the hospital. I was actually in a conference call when the news came that Liam had a temperature and continued the call for an hour knowing that Larry was on his way home. (Good thing there are only three short blocks and four long blocks between the office and home.) When I got home, Liam looked fine. He wasn’t the lethargic lump he was the last cycle of chemo. He was awake, alert and active. You wouldn’t know by looking at him that there was a battle raging in his body. And, to be perfectly honest, we were slow getting out the door because neither of us was looking forward to an extended stay in the hospital. As the cab, stuffed with a suitcase filled with matching pajamas (Liam insists his PJs match); rolling cart filled with games, toys, books, skeleton puzzle, alphabet and number flash cards, “What Every Four-Year-Old Should Know” books, rock collection, marble collection, small DVD player and collection of movies; alligator backpack filled with models from Smart Design, pieces of pipe cleaner, his favorite books including all of his Harry the Dirty Dog books, packets of pumpkin seeds he shows everyone but doesn’t want to plant, and a variety of other Liam treasures; my portable office with chargers; we were off. As the cab pulled away, Liam whispered, “I love you Daddy. I miss you Daddy. I love you Ella. I miss you Ella.” His temperature was 101.

We arrived at the hospital shortly after 5 and traveled the long hallways in the bowels of the hospital just off the front entrance, up an elevator and into Urgent Care. The lobby was packed with adult cancer patients and worried-looking family and friends. There were several people draped on stretchers in the corridor leading back to the bed area. It was quiet. It’s not like an emergency room you see on TV since this one only treats cancer. There’s no drama of gun shot wounds or car accidents, just the impact of cancer cells silently doing their awful march through a body. I surveyed the scene trying to figure out the easiest path to take to shelter Liam. I hate exposing him to people who look and act sick. He immediately picks up on it. The clerk at the desk was so inundated he didn’t even look up at me as he asked for my hospital card. And while looking at the wall of wood in front of him that separated him from the man at the desk who was too busy to even look up at us, Liam said to me, “Mommy – Over there is the little kitchen that has the broken juice machine.” He remembered from his last visit more than 14 months ago a detail as finite as a broken juice machine. OK, is this normal? And if he remembers this, what else does he remember? And, more importantly, what are his impressions of those memories?

I scanned the room looking for empty seats away from people who looked “really sick”, were coughing, throwing up, getting ready to pass out, or moaning and groaning. There was a seat next to the triage room. It was a prime end seat but, from memory, away from an outlet and I didn’t know if we had battery power in the DVD player. I sat down and positioned Liam in his stroller next to me but less than a minute into the wait to be seen, I could see him scanning the faces of people trying to assess the situation and turned his back on all the patients so that he couldn’t see anyone while suggesting we watch a movie. Of course, the DVD player needed to be charged. OK. Search for an outlet and hope I can find one in reach of our “safe” chair. And just as I was realizing there was no plug in reach and trying to figure out what was going to be the next move, we were called into triage ahead of all the other people waiting. It’s one of the nicest things Memorial Sloan-Kettering does for pediatric cancer patients and I was grateful to be able to navigate Liam away from the waiting room. There’s always this uncomfortable feeling between me the mom of a pediatric cancer patient and adult cancer patients as they look at a woman pushing a stroller into Urgent Care. Am I the sick one or Liam? And when they realize it’s Liam, there’s another type of uncomfortable feeling of, “Oh – A child having to deal with what I’m dealing with? How awful.” But then there’s me who tries to act like it’s not awful. It’s not a big deal. It’s manageable. Deal with it.

Liam’s temperature was 104.3 and rising.

We got to one of the Urgent Care rooms which are rooms with walls, not curtains, and a door. I shut the door to keep out the sights and sounds. It felt like a war zone with Liam as a soldier who shouldn’t be there. Liam didn’t want to get out of his stroller. He was taking the position that if he didn’t get out of the stroller we wouldn’t be staying long…we’d be going home soon. The nurse came and with his temperature rising as quickly as it was, we quickly discussed Liam’s preferences for having his medical port accessed. A parent and nurse in this situation work as a duet complementing each other and I’m always grateful for the nurses who ask what my son’s preferences are before his personal space is invaded in order to make things as comfortable as possible for him instead of just going about their job. But the tone of the conversation was urgent. We needed to draw blood cultures and get them to the lab, get some Tylenol in him to get the fever under control and infuse antibiotics into him as quickly as possible to stem the tide of whatever was causing the fever since his body had no ability to defend itself. Children have been lost in as little as 20 minutes if there is a particularly prolific bacteria multiplying and dividing in a perfect setting of no white blood cell predators. He was accessed with as little trauma as possible. (“Mommy – Do we have to?” “Yes Liam, we really have to.”) The tears ended quickly when Liam realized there was an opportunity to send his blood through the pneumatic tubing system. Ah, yes, nothing like a button to distract Curious George. Unfortunately the pneumatic tubing system that links departments like Urgent Care to the blood lab was down so it was back to the room and the stroller. By now Liam was feeling the effects of the invasion in his body and wanted to be carried, covered up and in a dark room, clutching the box that had just arrived that week from friends in Texas of colorful plastic beads he was going to make into jewelry.

It was about 6 p.m.

The pediatric fellow on duty came to examine Liam. She commented on how good he looked. Yes, we know…he looks good…something we’re incredibly grateful for and also what makes us feel like, “What the heck are we doing here in this situation with a child who looks like a picture of health…except for his bald head which, on Liam, is actually cute.” There’s a policy that a child coming from the “outside” can’t go to the pediatric floor until they’ve received a dose of antibiotics which was going to be an hour and a half infusion.

It was now 7 p.m.

The antibiotic finished dripping into his central line around 8:30. As the minutes went by, he became more fatigued. He wanted one thing from me – to have his feet rubbed nonstop.

We waited for our room on the 9th floor to be readied. We waited for the nurse in Urgent Care to report to the nurse who would be taking care of us upstairs what had happened to Liam during his time with her. We waited and waited for a blue-jacketed hospital escort to take us to the 9th floor. As the minutes turned into hours and a very inpatient patient became more and more agitated in the tiny room waiting to be taken to the floor with the tiny playroom, a male nurse who recognized us graciously offered to take us upstairs. As he hauled our load of “keep Liam entertained” stuff, I asked him what room we were going to. He said 25A. Room 25. It was the room we were in the last time. Somehow that seemed like a cruel joke to play on us – to put us in the same room. At least we weren’t in the same bed. We were on the “big” side of the postage size stamp room with one and a half arm’s length of room around the bed. Yes, it’s that small…one and a half arm’s length is all the room you have. I’ve measured it.

It was 10 p.m.

We walked into the room. The curtains were pulled back to give the room a larger feel. There was an Asian mother sitting next to her toddler who was banging on a small xylophone. A nurse was sitting on the bed to reach the toddler’s tummy and take care of something. I said hi to the mom. She didn’t say anything.

It was 10:30 p.m.

Liam and I settled in. The resident, who looked like she could be my baby sister, came in to talk with me about Liam. I hate those meetings with the resident…the ones where a young doctor who is clearly a bit uneasy about having to show their authority to someone who is much older and a protective parent of a young child has their first encounter with you. She solicitously said, “I know you’ve been through a lot tonight and you’ve probably answered a lot of questions, but I need to talk with you about your case and understand the history of it.” My spine tingled and the hair on the back of my neck rose. We don’t talk about Liam as a patient in front of him, especially around someone new who might say the “wrong” thing. I couldn’t leave Liam who wanted me next to him so that I could talk with her out of earshot. I tried to nicely but very firmly tell her there were probably a lot of questions about his history I wasn’t going to be able to answer tonight. And then in my “code” language tried my best to explain why. She seemed surprised and thrown off balance. She didn’t know where to go. So she sputtered, “I just need to know how he’s been feeling in the last few days.” Oh! OK…those questions I can answer. Yes, he has been feeling fine. Yes, he’s peeing and pooping. Yes, he’s drinking and eating (as much as I would expect at this stage of chemo). No, he’s not complaining of anything. No, he has no rashes I’ve seen. And then she said, “I understand you were supposed to go to the clinic (aka day hospital) today but missed your appointment.” Grr. This is why I don’t like dealing with residents. No, we didn’t have an appointment at the clinic today. We were in yesterday for counts. Liam’s team knew he was running a temperature, as they’re supposed to, but we were not due in the clinic today…thank you very much. And then she said, “He got his G shot downstairs…” “Wait – What? No he didn’t. He didn’t get a G shot downstairs. (G meaning GCSF shot which stimulates white blood cell production and, my understanding, was invented at Memorial Sloan-Kettering.) “Well, maybe he got it when you weren’t in the room” “I didn’t leave his side.” “Maybe he got it and you just didn’t realize.” “Impossible.” “But he could have gotten it intravenously.” “That would be a first since my understanding from Dr. Kushner is that G should always be given subcutaneously as a shot to be the most effective and I always know what my son is receiving before it goes on his IV pole.” “We give it often as an infusion via an IV line. I’ll have to call the pharmacy downstairs to confirm if they did or didn’t give it.” OK, Miss Resident. Thanks for the vote of confidence. My son did NOT receive an injection or infusion of GCSF while in Urgent Care. End of story. So then she starts with her talk about how Liam will receive a thorough examination in the morning from the attending where they’ll check him out head to toe. I told her that would be a first – we certainly are visited by the attending on a daily basis but I can’t think of a time we’ve been thoroughly examined by the attending upon arrival for fever during neutropenia. She didn’t like that answer. It was now after 11. I had no patience left, knew that despite her doubt we hadn’t received the G shot and that it stood in the way of Liam’s desire to go to bed, and was consider pulling out my sunglasses to protect Liam’s light-sensitive eyes from the bright lights shining in his eyes from our neighbor’s side of the room. I asked her if she knew if our neighbors were night owls. She said she didn’t know. I asked her if she would ask them to turn off their bright lights and turn on the smaller bedside light that is supposed to be used after 11 p.m. She suggested I talk with them myself. I asked her if she’s ever shared a small room with another family under conditions like these – it’s not the easiest thing to do. She wasn’t going to help.

The resident left. Adrienne, the great Filipino nurse who we got to know during our last stay, came in with the G shot. We exchanged hellos. I asked if the resident checked to see if Liam had received the injection in Urgent Care. She said she did and he hadn’t. After the deed was done, Liam wanted to go to sleep but kept complaining it was “too sunny.” Our neighbor’s lights were still on. It was after midnight. They were speaking a foreign language in a loud tone in varying degrees of alarm. At 1 a.m. after trying to shield Liam’s eyes, I finally took four steps to our neighbor’s side of the curtain which was drawn back just enough for me to see in. I said, “Excuse me but my son can’t sleep and he’s not feeling very well. Would you please turn off the overhead light and turn on the one next to the bed?” The mother said she didn’t understand English. I pointed to my watch and pointed to the lights and said, “Please, turn off.” She said to me, “Later!” I said it was later and needed to be done now. She refused. Finally, after a bit of a Mexican stand off, she turned on a different light that still bright but not quite so bright. Liam finally was able to fall asleep.

It was 1:30 a.m.

P.S. Our neighbors didn’t silence their IV pump alarm once during the night but instead would wait for the nurse to arrive. Why someone would subject not only themselves but their child, the child sleeping a few feet away, themselves and the other parent in the room to an irritatingly and appropriately urgent sounding alarm instead of hitting the “mute” button is something I’ve never understood.

Liam’s temperature was persistent throughout the night. 104+ and at one point was close to 105. He was shivering uncontrollably and, like a neglectful mother, I forgot to bring his down comforter to the hospital. The thin, rough cotton blankets in the hospital weren’t keeping Liam warm…even with four piled on top of him. Every part of his body was shivering and he would tell me, “Mommy – I can’t stop it. Why am I shivering? What does it mean?” It’s a new question for him to ask what something means. He doesn’t only want to know what something is, he wants to understand its meaning. Tylenol was given at every opportunity which meant sitting him up and convincing him to take a pill. My hands felt numb from rubbing his entire body nonstop. I was angry at myself for forgetting to bring his down comforter. I wanted to call Larry and tell him to get in a cab with Ella to bring it to us…even if it was 3:30 a.m.

Thursday Morning, September 4th

We met with the attending in the morning. The attending, a new doctor to us, swoops into your room with a phalanx of residents in tow…it’s less than 10 residents but more than 5 and makes you feel like a lab rat as the residents listen to the attending, consult their piece of paper with stats about your child, and almost sheepishly look at you. It’s supposed to be a learning opportunity for the residents…something I can understand and appreciate but usually don’t like to expose Liam to. We talked. He told me Liam’s blood culture from Urgent Care came back positive. I was dumbfounded. Liam’s very first positive blood culture. So much for that clean record. Damn. And with that news and Liam’s uncontrollable shivering and high temperatures came a new level of worry and anxiety. It was a brief meeting. It would take at least 48 hours if not more to identify what bacteria was wreaking havoc. He was receiving three broad-spectrum antibiotics that hopefully would be effective against this bacteria. Of course there are antibiotic-resistant bacteria and we hope Liam doesn’t have one of those, but we don’t know yet.

It was a fairly quiet day. Liam didn’t want to do much. He was too uncomfortable from the fevers and because he had to go stinky but was too afraid it was going to hurt and was doing everything he could to avoid it. Daddy visited in the morning and got Liam’s first big smile of the day. Liam kept telling Daddy how happy he was to see him and when it came time for Daddy to leave, Liam insisted on walking Daddy to the big glass door that separates the 9th floor from the outside world. With Daddy on the other side of the door, Liam whispered, “Daddy – I miss you. I love you.” We both had tears streaming down our face when Daddy left.

Fireman Tommy, our Fireman Tommy, came to visit and brought a fireman doll from the Fire Zone in Rockefeller Plaza. The doll with 22 moving parts and dressed in a NYC fire firefighter’s outfit including chock blocks to hold open doors, was immediately named Fireman Tommy. Fireman Tommy doll has not left Liam’s bedside. Fireman Tommy’s visit immediately improved his mood and brought out the mischief in him. Throughout the day he made an armful of bracelets and necklaces with his plastic beads, gave a bracelet to Courtney, one of his favorite nurses who was his very first nurse when we arrived at Memorial Sloan-Kettering, and poured over a new book on how things are made. His favorite thing so far is the toilet with the remote control. I saw the name of one of our roommates from our last visit on the name plate on the room next door but for the most part didn’t recognize any names, always a good thing.

Liam’s fevers persisted. As soon as the Tylenol started to wear off, the fever would come back. We moved to ice packs to keep his body cool and looked at videos on YouTube of white blood cells attacking bacteria. And Courtney and I kept checking in with each other about the status of Liam’s bowel movements. Several times Liam tried sitting on the potty but was too afraid it was going to hurt so he wouldn’t go. He had a small orange pill in the morning that would eventually soften his stinky, but so far Liam was resisting all desire to go.

A war over territory lines with our roommate ensued all day. They kept pushing a table into our space so that the arm and a half of space between the edge of the bed and the curtain became more like a hand-width away. The nurses and clerks who take vital signs, and who all pretty much know us especially after Liam’s last stay where he played the candy man, would push back to communicate the boundaries. Several told me that the father and mother have both been staying there at night, a huge no no. I kept trying to be understanding. Their daughter is adorable. I’ve heard the family has been here for about a month and that they came from China. They speak no English. Their daughter is a new neuroblastoma diagnosis. They are, I’m sure, completely freaked. I wish I could communicate with them. They rely on a video interpreter to communicate with the doctor, never an easy thing.

Throughout the day you hear snippets of conversations. “There’s nothing else that can be done.” “Patient in 2 needs to get an MRI.” “That patient has to be taken to MRI in his bed and with his PCA pump for pain.” “I just finished doing an NG tube.” “The MIBG showed extensive disease progression.” OK – Get me out of here. Now. With my son. Who is healthy and going to be just fine, thank you.

Thursday Night

At 11:30 I asked our neighbors to please turn off the lights. The father shouted at me through the curtain, “YOU GO HOME!” OK. Let me get this straight. You’re telling me to go home? Come on folks. I know you’re from another country but we’re all dealing with the same thing here. Can’t we get along? Aren’t they from the country that just held an amazing Olympic Games that fostered a sense of friendship and hospitality? And you wonder why countries have conflicts.

Liam has fevers all night and uncontrollable shivering.

Friday, September 5th

Liam was a new guy when he woke up…with a start…wanting to “quickly, mommy, quickly!” go stinky. After a few rounds of, “it’s going to hurt” conversations, he finally went and was quite relieved. Who knew someone could have so much joy to see their child go stinky! His last fever was at 2 a.m. It was around 8:30 so we were beyond the coverage of Tylenol. OK…we’re moving in the right direction. Now, if only we have the right combination of antibiotics to attack the multiplying invaders. I found out during the attending’s visit that Liam had two positive blood cultures…not one…and consideration was being given to take him to the operating room to remove his central line which is likely harboring the bacteria. The bacteria identified in his blood likes to cling to plastic. If he had one more positive culture, it was a definite trip to the operating room. It wasn’t the news we wanted to hear. Please, fevers, stay away. Please antibiotics, do your thing. Throughout the day Liam continued to improve. We were in the play room. He was warming up to his role of 9th floor mayor. He visited the nurses’ station. He received both a blood and platelet transfusion. He made bracelets for other patients including 3-year old Kasey who stole our hearts. She changed into a dress that matched her yellow and pink bracelet. He ate jelly toast that I loaded with as much high fructose sweetened grape jelly it could hold without folding. He drank but his favorite chocolate milk that has kept weight on him now tastes funny, likely a side effect of chemo. He’s back on whole milk…which I’m OK with for now as I’m quickly calculating calories. He anxiously awaited the arrival of Frank the candy man who comes every Friday night with two other volunteers to distribute candy and other sweets to patients. He has been doing it for years, maybe decades, and uses his own money to pay for the candy. When we finally see him, I recognize some of the Liam’s inventory from his candy store on the cart which makes me happy to see. And much to my surprise and I think Frank’s, Liam clung to his beloved Candy Man insisting he hold his hand. Liam helped push the candy cart, would go into the rooms of patients who could see visitors, and announce the arrival of the candy carts. He would help people make choices – “Oh – This one is really good and it’s good for you. You should try it!” He would tell people “thank you” when they took something from the cart and would push someone to take more if he felt they didn’t take enough. He would rearrange the cart between rooms to make sure it looked nice and neat and chased down a doctor who passed by the cart without taking anything. (With Liam’s insistence, the doctor took some sour candies.) And then after the candy man had left, Liam saw his girlfriend, John’s mommy, who were our roommates for a few nights during our last stay. He loves John’s mommy as much as he worships John. They were admitted on Thursday night and are in room 17A, the room we lived for almost a month. John’s mommy spent some time with Liam so that I could go to the bathroom and brush my teeth, things that are done in the non-patient bathrooms on the other side of the floor from where we’re located. He was completely goofy with her wanting to show off for her. She spent time with us in the playroom and even got Liam to drink an entire container (albeit only 4 ounces) of whole milk. We moved onto a second container. Liam took one sip and immediately started complaining about how yucky it tasted. I took a small sip and almost threw up. The milk was completely soured…huge curdles of rancid sour milk. And, of course because he has no white blood cells and there could be dangerous bacteria in the milk, we had to let the doctor who was there at 10:30 p.m. know what had happened. Liam rode a small push car around the floor. He keeps talking about how exercising will wake up his white blood cells, which is the rumor on the 9th floor. And around 11 p.m. we attempted to go to bed, but our roommates were having some issues (stinky issues over there too) which meant lights on and noise. I think it was around midnight Liam finally went to sleep but it might have been closer to 1. It’s now 11 a.m. on Saturday morning and Liam is still sleeping which is a good thing. Larry brought the white noise machine that’s in his bedroom to the hospital to help mask some of the noises and the time to myself has given me a chance to drink a cup of coffee and read up on gram positive bacteria. He has had his temperature and blood pressure checked every four hours and so far, hasn’t had a fever in 33 hours and his third blood culture hasn’t grown anything in more than 24 hours. The blood culture won’t be final until 72 hours but considering how the other two cultures bloomed with bacteria very quickly, this is a positive sign.

During Liam’s huge Valentine’s Day extravaganza, one of the packages we received was from a couple with a young son. The Daddy works for Life is Good. They sent an amazing package of goodies for Liam…hats, t-shirts, little boxer shorts, stickers, and a Life is Good book. Liam and Ella decorated his gator and fire trucks with Life is Good stickers. It’s a mantra we don’t need to be reminded of and very much appreciate. I had pulled the family’s note aside with the intention of following up with them, but Liam confiscated the card and it disappeared in one of his storage spots of Valentine’s cards that he has hoarded like a squirrel hides nuts. We find them everywhere…in the cooler in the garage, in suitcases, in drawers, tool boxes. Liam loves his Valentine’s cards and makes me read them to him all the time and tell him who sent each card. Some he designates as Ella’s so that El Bell gets to share on the bounty as well.

A few weeks ago we received some hats from Life is Good from a family in NJ whose daughter was in Liam’s preschool class for the few weeks he attended preschool before being diagnosed. They have been steady supporters who have been there since day one for which we are extremely grateful. As I looked at the hats with their life is good phrases, I was again reminded that yes, LIFE is good. We are grateful for every hour, every day and every memory we create and don’t take anything for granted.

2008-09-03T21:06:00.000-04:00

Here we go again... split between 2 worlds

2008-09-03T18:44:00.001-04:00

Liam's day started off by waking up next to me. I woke him by playing a You Tube video of an oinking pig on my laptop as I he was lying next to me in our bed and I was answering work email. He quickly rolled over with a big smile on his face when he heard the noise and immediately put in a request for Hurricane movies. Liam has been into learning about the weather and has moved from tornadoes and lighting to hurricanes. You Tube is an amazing resource when it comes to feeding Liams never ending curiosity. Ella joined us and was asking Liam if the video I was playing met with his approval...this one Liam? this one Liam..Liam this one? He is often too cool to answer her. I can see that her world revolves around his and it is beautiful for it is absolute love but in another sense it is sad knowing that they are often not able to be in the same world. Later today this reality was to again be proven true and the pain it causes us all to be separated as a family emblazoned on the innocent face of my sweet Ella.

The call from Philomena our nanny came around 1 pm. "Babba Liam" (what she calls me -mean's Liam's father in Kenyan) "I just checked Liam's temperature and it is 101". My laptop was closed and in my bag before I even hung up the phone. I stood at the elevator of the building where our new OXO offices are located waiting for what seemed forever. First elevator full...second elevator full...third elevator full....4th elevator full but I was fed up since I had been waiting for 15 minutes! As the door started to close I yelled out this building sucks! All of the human sardines on the elevator erupted in laughter and started cheering. No doubt everyone shares my frustration when it comes to the terrible elevator service in this trendy new office hot spot. It took 2 more elevators to get one that had just enough room for one additional rider and to the dismay of all onboard I pushed my way in.

When I arrived home I went to Liam's room where he was in bed trying to take a nap. I took his temperature and sure enough it was 101. He looked up and just nodded in a way that he often does. It is his non verbal way of communicating so many things. Gretchen may have mentioned this in a prior posts. Liam's nod was intended to tell me Hi Daddy! Yes I know I have a temperature, Don't worry Daddy it's not very high, Daddy I love you, Daddy why are you here and not at work? All this in a nod and the warmth of his big brown eyes.
"Hey buddy" I said out loud. Go to sleep.
Liam pulled out his passy and said "Daddy, I'm going to take a little nap but when I get up I want to play cars and blocks with you..ok?"
"Sure Liam" I replied with a big knot in my throat knowing very well that there was no playing in the cards today. My son was soon going to be on the way to the hospital for an unknown number of days.
I left Liam's room and started gathering all of the things he would need, marbles, backpack, books, Leapster game, DVD's, pajamas, etc.
Gretchen arrived home from a meeting and went about getting the items she needed to endure a possible week long stay in a less than ideal environment. I went in to check Liam's temperature again to see if it had gotten any higher and found that it was still as it had been earlier. He woke up and told me he wanted to get up and be with me so I took him into the our bedroom and turned PBS Sprout on for him to watch. I explained to Liam that his temperature was too high and that it was supposed to be 3 points lower. He asked me Why? I then went about explaining how your inside temperature should be 98.6 and if you get a cold or you are low on white blood cells that your temperature can go up. I told him we needed to get medicine to make it come back down. He shook his head in agreement. I then told him he needed to go to the hospital and he was fine with that as well. Gretchen came in and told him she was going to take him and that they might have to stay the night and this was not what Liam wanted to hear. Immediately he started crying and saying he did not want to sleep there. Again and again he repeated this to us. It killed us to hear him say this. Again it was one of those situations where there is nothing Gretchen or I can do to make make this go away for him. It is something he has to do and has no choice. We have no choice. We explained to Liam that we would make it as fun as possible. I told Liam that mommy has a bag full of puzzles, books, videos, and projects, to make the stay as fun as possible. Gretchen knew this week was coming and after the last stay opted to be prepared this time by gathering a bunch of new objects, books, and interesting projects. Hopefully he will have many visitors to break up his days. He stopped crying but was not any happier about where he was going. I went and got the bag of fun stuff so he could focus on it instead of us getting packing bags. Ella wandered in from a walk with Philomena and wanted to know what was going on. "Daddy why are you not at work?" asked Ella
I explained to her that Liam had a temperature.
"Whhhhyyy Daddy?"
"Because he doesn't feel well honey" I replied
Next I told her that Liam had to go to the hospital and to my dismay she instantly started crying and while crying she said "I don't want Liam to go to the hospital"
So this brings my post today full circle..... back to my observation this morning about how their worlds are one and how Liam's world and hers are supposed to be one and yet they are too often split into two very different worlds. Liam must too often travel to a world where innocence is stripped away bit by bit and where life and death compete for keeps, where his best friend is not able to visit or share a laugh or tickle with him. A world he dreads and world we want nothing more than for him to one day soon be able to try and slowly forget the finer details of. Ella's word is turned upside down when her big brother, best friend, and idol is not within ear shot, not able to share marbles with her, or show her how she is supposed to do something. Our home is not a home without Liam in it and certainly not a home without both Gretchen and Liam missing from it.
Ella has asked me where Liam is 3 times and where mommy is twice. I always repeat her question back to her because she knows the answer. Where is Liam? In the hospital..Where is mommy? in the hospital with Liam. When is mommy coming home? in two days Daddy.....two days. Ella and I miss them both to the moon and back and it's only been 4 hours since I watched them pull away in a cab.

I rest assured knowing that Liam is without a doubt under excellent care when he is admitted and inpatient.
MSKCC is a world class facility but their room setup is absolutely terrible . Subjecting families to sharing a room means that more often than not one child is subjected to the depressing and disruptive noise and activity that surrounds a very sick child in the adjacent bed all night long. Gretchen does her best to insulate Liam from this barrage to his senses and memory but it is unavoidable because you cannot get away from the misery that may be in the bed on the other side of the curtain. MSKCC is one of the few if not the only major pediatric cancer center to subject their child patients and their families to this environment. Most other hospitals provide private rooms and mainly due to the possibility of infection. MSKCC requires you to be in patient after a fever while neutropenic and remain inpatient until your counts rebound but to then expose the child to other children and their stream of visitors makes no sense. It is what it is and there is no doubt they offer far superior care on many other levels but this is a true blemish that cannot be ignored. Let's put it this way...Liam has repeatedly shared with Gretchen and I that He "hates the hospital" and he is not referring to the day clinic and all of his friends there but rather to his last week long inpatient experience where he was bored, tired, and where he had an abysmal experience even though Gretchen tried to occupy his mind with countless games, distractions, visitors, etc. To a 4 year old it is nothing short of prison. Especially to one who is there due to a fever and who feels perfectly fine otherwise. A good comparison for parents might be taking your kids on an airplane trip. Toddlers can only take it for what 30 minutes before they are kicking the seat, running the aisles and irritating anyone within 10 rows of them? Now imagine being on an airplane with a 4 year old for 7 whole days! Get the picture? We are fortunate he feels as good as he does and we just wish he did not have to spend days when he is feeling so good inpatient connected to an IV pole and not able to enjoy being a kid. No kid anywhere in the world should have to endure the mental and physical abuse that children fighting cancer have no choice but to endure again and again and again. It is simply evil torture disguised as an incurable disease.

Please pass the Throw Up Bucket

2008-08-27T11:35:00.000-04:00

9:45 p.m. Tuesday, 8/26 Update

Liam just finished throwing up for the third time in an hour. Chemo throw up for Liam is a total body experience…it sounds like his toes are throwing up and every vertebrae in his back. It comes out his nose. He makes an awful wretching sound. He spits frantically to clear the throw up from his mouth while whimpering “there’s more – don’t move the bucket!” And over and over he says, “I don’t like throwing up. I don’t like it at all.” But tonight, after his third throw up session and before I had even wiped away the combo of spit, he raised his head from the throw up bucket and said in a cautiously excited voice, “Mommy – One plus one is two! And two plus two is four!” And as soon as I had him cleaned up, he curled into me and started picking out the letters he recognized on the front page of the newspaper. “Mommy – There’s my letter – and L. And that letter is for dog it’s a, a, a, D! And that’s my other letter…a W. Over there is a snake letter. What’s it’s name again?” The effects of the anti-nausea pill are finally setting in and he’s asleep covered in a Batman blanket that arrived yesterday and surrounded by little puppy, big puppy, monkey puppy, duck puppy, super soft yellow blankie and pilly the pillow which has the ever-present magic rock attached to it and a new addition, a lucky stone passed along from Aunt Franny’s son Ben. The lucky stone has a picture of deer painted on it and Liam insisted on having it reside with the magic stone.

Today was the second of two very long hospital days. We arrived at 8 and left around 4:30. We painted, weaved a complex spider web using colored plastic string across his door, booby trapped several of the cabinet doors in his day hospital room, constructed a gate using elastic string and insisted on each visitor announcing their intent before coming into his room, worked on identifying letters, visited John who is in room 26 in the day hospital this week, read his anatomy book again and again, learned how to take a pulse and took Dr. Kushner’s, asked Dr. Kushner (which is still pronounced, “Dr. Kush-shen-ner”) to explain how oxygen gets into blood by using the diagram of a heart and lungs in his anatomy book, gave Dr. Kushner an unexpected hug when he was leaving and again admonished him for not being around recently, learned where clavicle bones are located, walked with Ester to her office so that we could watch for signs of limping, played his Leapster game and was focused by how much Wall-e could recycle, drank a few sips, ate nothing, peed a lot in the cup which is always thrilling (Holy Mackerel Mommy – Look at how much Pee Pee is in there!), played with three squishy rubber balls with hair-like strings that can be squeezed, looked for places in his body where he could see his veins, read “There’s a Map in my Lap” and discussed all the different kinds of maps there are and what kind he’d like to have (one with “his” beach house on it), wanted to know how an umbilical cord works and how it fed him when he was a baby in my tummy, recited how the digestive system works from taking a bite to it becoming a stinky, moaned about the long day in the hospital, asked more times than I could count when we were going to get out, watched Curious George, didn’t take a nap, and kept a watchful eye on the Pooh balloon that was accidentally released on the second day of the 1st cycle of chemo that is still out of reach but not out of sight. The minute the first two stroller wheels crossed the threshold out of the hospital front doors and onto the busy York Avenue sidewalk, Liam fell fast asleep and was sleeping so hard he didn’t even wake up when I lifted him and the backpack containing a pump and fluids for the night from the stroller and gently placed him in the cab for the ride home. John’s mom, who happened to be outside, stuffed the trunk of the cab with all the “stuff” that goes along with Liam to the hospital and closed the cab door.

Tomorrow and Thursday should be much shorter days. It’s a good thing. We’re not conditioned for super-long hospital days and are still recovering from our eight-day hospital stay with another hospital stay on the horizon. But the long days are now chalked off the check list of things that need to happen in order to get him back to where he so very much wants to be…school. Tonight will probably be a long night but tomorrow…tomorrow is a brand new day and one step closer to being back on track.

P.S. Yesterday we sent an emissary to the inpatient side to deliver a note to Victoria. It included a reminder to get up and walk…one foot in front of the other…and a stick figure drawing of Liam with his big, silly smile. We’re not allowed on the inpatient side, just like when we’re inpatient we’re not allowed on the day hospital side. When our emissary returned from his mission, I couldn’t tell who was more touched…him for having learned about Victoria and seeing the huge smile the note from Liam brought to her face, or me for hearing how Victoria smiled.

It’s all just so ludicrous

2008-08-25T16:30:00.000-04:00

Monday, August 25, 12:35 p.m.
We’re back at it. We’re five hours into day one of the second round of chemo which we hope is our last round of high-dose chemo. (I think he can’t receive any more after this….but it’s a question I don’t ask.) We’ll be here every day this week with Monday and Tuesday being the super long days. And after the round finishes on Thursday, we’ll be back on Friday for blood counts. We anticipate being back in patient some time next week until his body’s bone marrow recovers enough from the assault of toxic chemicals and starts making white blood cells.

Liam had a CT scan last Tuesday which looked fine. It was his eighth CT scan and his third without anesthesia. He was a seasoned pro…unfortunately. Full of questions about how it takes pictures (we’ve actually watched videos on YouTube of how a CT machine works, much to Liam’s fascination), impatience that we had to wait for almost two hours, and questions about why Dr. Kushner wanted to see pictures of his inside body. It was done to have a new post-op base line and apparently was just fine. What I’m leaving out is the struggle to get Liam to drink out ounces of apple juice spiked with the contrast fluid needed to be ingested before a CT scan but not too much before. He really despises the whole having to drink contrast activity and takes the tiniest of sips and pretends to gag on each one. Those eight ounces take more than an hour of constant badgering to get down…tiny sip after tiny sip…all while keeping a close eye on my watch to make sure it gets down by the deadline. The process starts out as a negotiation and then as the deadline approaches, shifts to more of a dictatorship. And then once we arrive at the hospital, we have to deal with the whole nervous energy leading up to having his port accessed. “Mommy, why do we have to do it?” “Do we really have to do it?” “But Mommy, it’s going to hurt!” And then when it actually comes time to plunge the one-inch needle through his skin to go into the port, I find myself levitating over my body watching the scene from above because it just so goes against the laws of being a child…or a parent. How many times have I had to restrain my sweet son while he either gets a finger prick, injection, dressing change, or some other things that just shouldn’t be happening all in the name of giving him life? But, as always, what gives me strength is Liam. Two minutes after the accessing process, he’s fine…ready to play. He still loves me. He doesn’t get angry with me or hold anything against me. He’s still my sweet son who has had to endure yet another personal invasion. As hard as the accessing process is, the deaccessing is just as awful. He hates having the sticky bandages removed from his sensitive skin. He insists that I do it, one handed, using lots of adhesive remover pads, without pulling, while he sits in my lap. And then after the bandages are removed, he braces himself and I restrain his waving arms and kicking legs so that the nurse can pull the 1-inch needle out from his chest. It’s not so much that it hurts, I think it’s more of another assault on his body and personal space he’s objecting.

He’s back up to his pre-surgery weight – 18.4 kilos – courtesy of PediaSure chocolate milk and homemade Belgium waffles made with tons of butter and whole milk. (He can eat two Belgium waffles in a sitting.) We finally got him to branch out and try a different food – chicken nuggets – which he devoured six of in one sitting which, for him, is a record. We know these victories are short lived since his appetite will be wiped away beginning today for the next three weeks. Right now he’s eating Smart Puff Cheese Puffs one after the other. He has almost consumed an entire bag which will equal 585 precious calories. And he’s had ¾ of a Belgium waffle (I brought frozen ones to the hospital with the hope he’d eat) and three PediaSure drinks (at 237 calories each). I remember the days I used to count calories for an entirely different reason. We’ve already had a conversation with Dr. Kushner, whom Liam admonished for not being around lately, about getting an X-Ray on Liam’s right knee later this week. He fell last weekend on his right knee and has been limping since…although not letting it slow him down…but because it’s the right side of his body where his original tumor was located, and because he had disease on his femur in that leg (although not in his bone marrow), and because it’s neuroblastoma which doesn’t like to give up, and because chemo can cause bone weakening…we’ll have to check it out. You know what I despise about this disease? For the rest of Liam’s life, a bump can never just be a bump…it will always need to be assumed it’s something bad. In this world you assume for the worst and hope for the best. When you see Liam and see how “normal” he looks and acts, it’s hard to reconcile in your mind that his health relies so much on the skill of the countless medical personnel. And wait, could someone please wake me up from this dream of having a child who has already been a part of two clinical trials and is going on his third?! Clinical trials? My child? You have got to be kidding me. There is just no way.

We’ve been a little slow on updates on Liam. The extra time we normally have in our schedule has been taken up with working on the Cookies for Kids’ Cancer website. It has been a very tedious, slow-going process but it’s going and it is gorgeous. The whole thing, though, like the rest of my life, has been fairly ludicrous when you look at what we’re juggling to get it all done. Writing copy while sitting next to Liam in a hospital bed, weighing in on a look of a page while waiting to be called into a CT room, staying up until 3 a.m. with my husband to get copy where it needs to be. I’m not sure if my birthday wish came true, I don’t know if we have 100 people who have committed to holding a bake sale, but it’s almost immaterial in light of the incredibly powerful e-mails we received from many friends but even more people who we don’t know but have been following our story. What is it about someone’s character to reach out to someone they don’t know and make a commitment to get involved? And one very, very special person already had her own bake sale in her office last week to win the title of early bird bake “sale-r.” She raised $100 in her office bake sale and then through her work received a matching donation to double the amount of money she raised. Our early-birder is not a long-time friend or family member, but someone who heard about us from someone else and decided to get involved.

One thing I haven’t been able to write about yet because it’s still too raw is one very special teenager we met while Liam was in patient. Victoria was diagnosed only a few days before Liam was admitted during his last stay. She went from being a healthy, trophy-winning softball player with the world ahead of her to a stage IV cancer patient lying flat on her back with no warning. For the week that we were in patient, we would see her father walking the halls. It wasn’t until the sixth day that we finally met him and he told us about his daughter. She had slid into second base during a softball game and it bothered her knee, but not enough to cause alarm. They left for vacation the next week. The pain got worse. They went to an ER to get it checked out. The ER doctor thought he saw something but couldn’t tell what and suggested the family see an orthopedic doctor. They cut their vacation short and made an appointment with an orthopedic doctor. He ordered a CT scan and told them she needed to see an oncologist immediately. They made an appointment and she was almost immediately in surgery to remove cancer from several areas of her body including along her back. Her father invited me to visit her and give her a pep talk and I immediately said yes. What I didn’t realize is that she was in room 10A, the very room Liam and I first occupied when we were brought to Memorial Sloan-Kettering via ambulance on Tuesday evening, February 27, 2007. I haven’t been in that room since and actually avoid going near it. Victoria is a beautiful girl with long, curly dark hair and soft, brown eyes. She was lying in completely flat in bed. I went over to her side, held her hands tight and told her about Liam and how we have never, ever, ever thought anything other than Liam will be fine and she too will be fine. I told her that these early days are the absolute worse. I told her that she’s a competitor and she knows what it means to be up against a tough team and how to win and that she can win. I told her to stay focused. I told her I love her and will be here for her and her family.

The next day Liam visited her with his candy cart and bestowed her with lots of candy from his candy store while literally bouncing around her room like Tigger. She smiled. He told her he loved her. And again I was reminded why we’re doing Cookies for Kids’ Cancer out of sheer determination and conviction. We simply have to.

My Birthday Wish

2008-08-19T07:26:00.000-04:00

Wednesday, August 20th is my birthday. I have two very special birthday wishes. I’m sure everyone knows one of those wishes since it’s the same wish we all have for sweet Liam. The other wish came to me today as I was restraining a kicking, screaming, crying, thrashing Liam who was trying to avoid getting a finger stick to check his blood counts. (They were, by the way, very good and we might be starting the second and hopefully final round of chemo on Wednesday.) My birthday wish is to hear from 100 people by Wednesday who are committed to holding a bake sale in support of pediatric cancer research. I can’t think of anything I want more than to know that everyone who has been following our story wants to get involved. And I think it’s a reasonable wish. If every person who reads about Liam e-mailed us to tell us they want to hold a bake sale, we would easily surpass that number. If each of those people convinced two of their friends to join the cause and hold their own bake sale, then we’d really be getting into some impressive numbers. If we can sell 96,000 cookies in a few weeks, why couldn’t we hear from 100 people who want to hold a bake sale? And the bigger those numbers are, the more we can fight back against pediatric cancer. I hope my birthday wish comes true. I need my birthday wish to come true.
Gretchen

gretchen.holt@gmail.com

We're Out!!

2008-08-15T11:36:00.000-04:00

We drew some blood for a CBC around 9:30 last night to check if anything had changed from the morning.
Number needed to be released: .5
Tuesday's ANC: 0
Wednesday's ANC: .1
Thursday's ANC: .2
Thursday Evening ANC: 2.62
Result: We are out of
here!!!!
Daddy came to help us home. Liam was thrilled and immediately sucked down 8 ounces of chocolate milk in excitement. And we rejoiced to be back together.
A cab was immediately available and by the time the door was shut, Liam was asleep.
It is good to be home.

Some Pictures

2008-08-14T14:03:00.000-04:00

A rainbow

A rare nap

Liam and his roommate John

Thursday, August 14 (I think)

2008-08-14T13:41:00.000-04:00

A Long Week but Expected…that’s Turning into Two Very Long Weeks

Note: This entry is a little disjointed because I’ve been writing it in fits and spurts since we were admitted last Thursday. As of this morning, Liam’s ANC blood count was .2. Yesterday it was .1. The day before it was 0 and it was 0 for the eight preceding days. It needs to be .5 in order to be released. To hear that it has gone up such a small amount was tough. I’m running out of crafting projects, enthusiasm and creativity…but never out of love for my son. He’s also bored and completely over being here. According to the team, this is par for the course…but it doesn’t make being cooped up in a sterile environment with a child who thrives on being outdoors any easier. I’m threatening a dishonorable hospital discharge today and just leave. I’ve run out of clothes to wear and things to do. But too bad. It is what it is and I just need to deal with it. OK – enough whining. I’m off to assemble a scavenger hunt for him around the pediatric floor.

We’ve been in the hospital since Thursday. Last night was our seventh night of sleeping on what feels like a partially inflated air mattress that makes a loud noise every few minutes as it shudders and shakes to redistribute air in an effort to prevent bed sores. Liam doesn’t like the squishy, constantly adjusting mattress at all. Every time it starts its shaking mode, reminiscent of a cheap motel room bed that has a place to slip a quarter to engage the “comfort bed” mode, Liam goes into his “Oh No Mommy – The Bed is Moving Again!” tirade. And of course there’s the uncomfortableness of sharing a cramped room with another family going through a rough time and trying not to hear what’s happening. Our first roommate, John, was awesome. A vibrant 12 year old, John was recovering from a complicated surgery on his leg. He has a different kind of cancer than Liam which only serves as a reminder of how many children need us to make Cookies for Kids’ Cancer work. Kids like John, Baby Golden, Evan, Adina, Victoria and Seth who all deserve everyone to do their best to find better treatment options and cures. John is much older than his dozen years. When he heard Liam having a hard time taking a pillow (aka pill), John called to Liam through the curtain dividing the room to tell him he would give him candy if he took his pill. John’s mom, an incredibly beautiful and stylish woman with a heavy Turkish accent, cooed and comforted Liam every chance she could and immediately made me feel like we were comrades in different battles but the same fight. She told me how she made her son shave his head when his hair started to fall out. She wanted her son to continue to be beautiful and in her mind, patchy hair wouldn’t be right for her boy. Speaking of hair, Liam’s has started falling out which is as difficult for me to deal with as I thought it would be. We got a buzz haircut for him a week ago. It is really short and just like daddy’s hair cut. We wanted to get ahead of the pending falling hair instead of him having longer hair which looks just plain bizarre when it’s falling out in chunks. But now he looks like he buzzed his own head and took chunks out all over his scalp. His hair has patches missing from all over and actually, as I look at it, there are only patches of hair left. I’m considering delaying having him start school because I refuse to put him in a situation where he feels different or becomes self-conscious. He’ll have plenty of time to deal with those two feelings…I just don’t want to expose him to that potential hurt at the tender age of four. It would break my heart even more than the million times it has been broken if Liam told me that someone made fun of him or made him feel uncomfortable for having no hair. And I suppose I’m even more sensitive since Liam was a puddle of tears when the morning after his hair cut he saw his reflection and started crying because he hated how it looked and told me between sobs that it would never grow back. And as I held him in the bathroom clutching him close to me and telling him it was going to be OK, that his hair really would grow back, I kept thinking it was only a dress rehearsal of what’s about to come when all of his hair is gone. Of course I’ll think of a way to position the hair loss so that it’s not a big deal and acceptable to him, but right now I haven’t figured out what that message is going to be.

We found out on Monday, August 4th, that he was at 0 white blood cells and no absolute neutrophils (ANC). It was a bit of a surprise since we weren’t anticipating him to bottom out until Wednesday, but then again nothing surprises me any more when it comes to this disease. So what we thought was going to be a quick trip to the hospital for a check on blood counts turned out to be an eight hour journey to receive a blood transfusion. Blood transfusions are not quick things…you need to do a type and cross to make sure the blood being received is compatible with Liam’s blood; there’s the pre-medication to prevent any potential reactions which takes an hour; and then you have to wait for the blood which always seems to take too long. When it finally arrives you peek to see if it’s a direct-to-donor, meaning someone donated it specifically for Liam, or if it’s from one of the thousands of volunteers who donate blood to anyone who needs it year round. When Liam’s bag of blood arrived, the first thing I noticed was the pink tag indicating it was direct-to-donor donation. (Thank you donor!) When we finally got home on Monday night, Liam’s response to Daddy and Ella was to tell them, “What a long day! We were there forever!”

The rest of the week was a whirlwind between working, checking his temperature every hour, visits to the hospital, urging Liam to keep drinking (after Monday, eating was out), and hoping to avoid or delay a fever as long as possible. But by Thursday morning, when Liam couldn’t even open his eyes, barely move and wanted to be in a dark and quiet room with his head covered, we knew it was probably the day that we would be admitted. Even a quick visit from his firemen friends who happened to be in the neighborhood couldn’t perk him up. He gave them a big smile, but insisted that they come to see him while he was lying in bed instead of his usual bounding-with-excitement greeting. After a flurry of e-mails with Ester, one of nurse practitioners on the neuroblastoma team who serves as much as a grandmother to Liam as a rock for me, his temperature went from 99 to over 102 in a matter of minutes and we were off to the hospital. The only thing Liam could say was, “I feel lousy…really lousy.” And as I scooped him up in my arms to carry him and his mass of accoutrements of toys and treasures for what could be an extended stay at Hotel Memorial Sloan-Kettering, I immediately noticed how alarmingly light he felt in my arms

The story of Thursday was resistance as he completely refused to drink anything and we had to get Tylenol in him to get his temperature, which was continuing to rise, under control. After more than an hour of negotiation where Liam shut his mouth and said no in the most pitiful sounding voice I’ve heard uttered, Ester and I had to get tough and force liquid Tylenol down his throat…an awful, awful experience where you feel like you’re treating your child more like an animal than a person…which he immediately threw up. It’s not that our pill-popping son was trying to be difficult, but he associates drinking and eating with throwing up which, in his mind, would make him feel even more awful. After the unpleasantness of forcing his mouth open and shoving a syringe filled with Tylenol into his throat, he opted to try to take the pill. And he did. Very reluctantly, while consuming as little liquid as possible and then went back to sleep but not before asking me to rub his feet and not stop…even when he fell asleep and reminding me to take my shoes off before I got into bed.

Our time at the hospital has been a mindless, timeless waiting game trying to keep Curious George engaged, entertained, occupied, away from germs and out of too much trouble. He hasn’t had a fever in more than six days but because he still has no ANCs, a specific type of white blood cell that is critical to fight bacteria and germs, we have to stay here. And beginning Friday morning, he was ready to go. It has been wind sprints around the pediatric floor, games of hide and go seek, hours and hours and hours in the playroom trying to make the same assortment of toys we saw during the last play date of interest again, and craft projects galore. And then there have been the negotiations…he started taking pills again Friday afternoon (thank goodness) and gradually starting drinking beginning Saturday. On Sunday he ate, finally. Two pieces of jelly toast, three bananas, one Starburst and one M&M.

Since he has arrived, he has been visited by Fireman Tommy (who cuddled with Liam in his bed); received ten shots, two platelet transfusions and one red blood cell transfusion; countless doses of antibiotics to ward off infections; received a visit from Deanna and Dan from M&Ms whom we have never met but have been following Liam’s story and drove three hours on Saturday to donate blood and platelets and drop off 10 cases of M&Ms, Starbursts, Skittles Gum and some very special M&Ms with Liam’s picture and the phrases Prince Liam, The Brave, The Amazing (we love them!); lost another kilo of weight which makes a total of 4.4 pounds lost in the past month; set up a candy store in his room and gives every person who enters candy but doesn’t ask for any money just a smile; makes daily candy runs pulling the red wagon he lived in during his initial hospital stay to distribute candy to every person he meets; ran down a hallway clutching a pack of Starbursts to chase down a resident who had the nerve to not stop and get some candy from him; made a robot with an empty box of M&Ms (the padded inner liner makes a perfect robot body and the box is decorated with Styrofoam cups, glitter, construction paper, pipe cleaners, colored popsicle sticks, a few butterflies, colored straws, plastic bowls and a foam chipmunk); watched ET; remembered what magic hair is but this time decided to help the process by taking a lint roller to his head to collect as much hair as possible (he shared his discovery with Adina, a teenager down the hall who is in isolation who Liam visits every day by kneeling in front of the bottom window in front of her door to wave hi and talk to her; has had to collect his urine in a special urinal since he has been in here which he LOVES because it gives him the perfect excuse to not have to go to the bathroom (Setting: Playroom. “Mommy – I have to go pee pee.” “Liam – Let’s go back to the room to go in the cup.” “No Mommy – I’m busy – bring the cup here and I’ll go while I’m playing.”); made a wind chime out of paper cups which is hung from his IV pole; made a huge vat of slime with liquid starch, water and glue and purple paint: donated most of his candy to the volunteer who comes every Friday night to Memorial Sloan-Kettering to give candy to all of the kids who are in patient (aka – sleeping here); made countless visits to see Baby Golden and Golden’s Mommy whom I think he has a crush on; made new friends who he has since seen leave; experimented making waterfalls with all kinds of containers in the bathroom sink; has had his blood pressure, temperature and pulse oxygen levels taken around the clock every day and is so used to it that he doesn’t even wake up at night when the blood pressure cuff squeezes his arm; did a face plant onto the floor when he was running at top speed (good thing he had a platelet transfusion that day); had his hands and arms painted by Juliette the face painter with a blue flower, white duck with orange bill, spider web and snake; has told me time and time and time again how much he loves me; and has been bright and upbeat since being here even though he “hates being here!”; had a private magician showing on Tuesday night with Aunt Kate while Mommy got to take her second shower in the bathroom with no place to put anything; played countless games of Don’t Spill the Beans, Animal Bingo and his own version of Diego checkers; enchanted a beautiful, young volunteer who recently graduated from Princeton with the sole intention of being a cancer researcher so much that she came back the next night just to play with him; practiced tracing his name over and over and over to the point that he’s really good (a small victory!); discovered that if you put bingo chips in a play farm silo, it makes an excellent chip holder; blew me away by correctly answering 300 questions in a series of flash cards designed for 4-year olds; squealed with delight when he remembered how to touch the roof of his mouth with his tongue to practice the “L” sound (something he learned in his first and since only speech therapy lesson five weeks ago); and has played with his prized crane for hours and hours.

Liam”isms” to share:
- “Mommy, Mommy, I have a question for you.” Primarily used as a great stall tactic to avoid getting a shot or having to take a pill.

- “That’s what I’m talking about!” Used in many different scenarios from drinking a huge gulp of chocolate milk to explaining how something should be done.
- “You’re not going to leave me ever, right? Right Mommy? Because we’re a team.” Said after he heard almost four-year-old Evan kissing and saying good bye to his daddy who left the hospital for a night off so that Grandma could spend the night and Daddy could get a break.

- “Oh, that’s Courtney, that’s the nurse I love.” Casual remark after seeing Courtney for the first time in more than a year.

- “To get out of here, we have to drink, eat and grow white blood cells. OK Mommy – Let’s do cheers and drink. “ Liam clinks cups with me before every sip of drink.

I try to keep things focused on Liam, but the reality of life in the hospital is tough. You hear alarming alarms going off all day, witness families in huddled and hushed conversations, see kids who look like they’ve had the life sucked out of them, hear bits and pieces of medical conversations with teams of doctors that just don’t sound good, and see moms and dads looking worried. But I try to maintain a steady cadence of “everything’s fine” around Liam.

But, because it’s not my nature to be negative…I’ll end with a positive story. Two nights ago Liam’s friend Bob came to visit. Bob and his wife Lee have been near and dear friends for close to 15 years. Lee is one of the most incredible people in the world…and a person who from the minute I met in a kitchen in Richmond, Virginia, had an instant bond. She’s the kind of friend you can always pick right up with even if you haven’t spoken in months. On the day Liam was diagnosed and our world was turned upside down, Lee and Bob were introducing their book, “In an Instant,” to the world about the journey they had been on since Bob was injured in Iraq. The first day Liam was at Memorial Sloan-Kettering and we were trying to figure out the damage of the bomb that just hit our world, Lee presented Liam with a special stone that was given to her by a friend to help Bob recover. The rock, which has special healing powers, rested underneath Bob’s pillow while he was in a coma and stayed near him throughout his recovery. Liam has kept Bob’s special rock in a small satchel attached to his pillow that goes everywhere with him and has cradled Liam’s head every night. When Liam gets anxious about something, it’s the special rock that he rubs for comfort. The rock has been to the operating room three times, countless MIBG and CT scans, every round of radiation and antibody treatment. Liam loves rainbows. They give him great joy to watch and make him literally dance with excitement. On the night Bob came to visit, “Aunt” Kate was on her way to the hospital to bring me some relief and Liam a prism we had ordered for him to teach him about rainbows. As Bob was watching Liam play, he looked out the window of the hospital room and saw a giant rainbow. It was huge and crisp and clear and right there…so close you could reach out and touch it. Bob called to Liam to come see the rainbow, Liam looked at it and said in his sweet, animated, squeaky voice, “OH WOW! That’s Cool! I LOVE rainbows! I love the colors. They’re sooooo pretty.” And Bob looked at me and said, “It’s a sign. You know it’s a sign.” Yes, I know. Liam will be fine. We all know he’ll be fine.

Maybe a jaded view?

2008-08-10T14:30:00.000-04:00

Most posts you see on our blog are from Gretchen and on the rare occasion that I feel like letting my feelings free you see one from me. Well it looks like today might be one of those days though am not so sure it is a good thing. I guess I am week from lack of sleep as I often resist the urge to write and appear vulnerable (guy defense mechanism) and often my feelings are more aligned with anger and frustration than with sharing with you what an amazing spirit my son has and how amazing and strong my wife is. She always makes the worst of situations tolerable for Liam and often at her own expense. If there is a hero in my book besides my amazing son it is without a doubt my wife. I am sure I do not tell her this often enough and I am sure that in my own state of pain and worry that I do not often have the energy and feelings left to tell her just how wonderful she is. The truth is, after the last year of fighting and our dramatic and sudden fall from recovery back to active treatment, I am left numb and to put it simply pissed off.

More than a year after Liam was first diagnosed I realize that I have less tolerance for peoples petty troubles and endless whining. I find that I have no need in my life for people who promise the moon and deliver not even a single ray of sunshine. I have less patience for mediocrity and for those whose mere existence is to just exist. The promises of help and support from many that in the end often don't materialize beyond words is something that no longer surprises me but rather is actually expected . At the same time I have met more truly amazing, caring people in the last year than in my entire lifetime. Perfect strangers in some cases who have truly gone above and beyond for Liam and our family. I have no need for those who treat Gretchen and I like lepers because they are sad for us. Those who avoid us because they are sad and focus on our despair versus the miracle that is Liam and the powerful inspiration that his spirit and bravery should be for everyone who has the privilege of knowing him. Don't be sad for us, be mad and motivated by us and by Liam. Get off your ass and do something for Liam, for kids with cancer, or any sick kid for that matter. Don't be sad and please don't say, let me know what I can do to help. If you truly truly want to help Liam and other kids like him and are not just saying it, your opportunity is just around the corner. When Cookies for Kids' Cancer, the non-profit we are creating with the help of some amazing supporters, launches in the coming weeks you will be presented with our answer to the all to common statement of let me know if there is anything you need or that I can do to help. The answer is you can hold a bake sale, encourage a business, co-workers, friends, family, and anyone you can to hold a bake sale to raise money for pediatric cancer research. Liam does not need anything more than he needs better treatment options at his disposal. Helping us help researchers discover the next best treatment for pediatric cancer is how you can really help.

Listen I know our fight and purpose is not for everybody fight but if you are reading this blog then you either care or are just here to witness the drama and misery and that would mean you are a bit twisted. So assuming each of you, more than 300 of you on any given day, are reading this blog because you truly care then we should be able to have more than 300 bake sales in the month of September. You would be doing something to support Liam and to support Gretchen's brain child. Do something to help us fight back against the relentless disease that does not want to let go of our son and the 4 year old kid who you have come to love. Gretchen might not have made it crystal clear in her post from a few days ago when she asked anyone interested in knowing more about Cookies for Kids' Cancer to send her an email because only 3 or 4 of you did so. Funny enough one of the people who did respond was one of those perfect strangers who know of us only through our blog. The email she sent Gretchen was what has kept us going the last few days as our family has been split in two with Gretchen and Liam in the hospital.

The government just approved an additional $30 million a year in pediatric cancer research to be spread across numerous types other next 5 years. A pharmaceutical company would spend twice this amount in one year just to advertise a new erectile dysfunction drug they spent hundreds of millions of dollars developing. Maybe this is why there has not been a new pediatric cancer drug developed in the last 20 years. Maybe this is why kids are treated with chemo agents developed for adults and the reason that most of the other drugs they are given were also never intended or proven safe for them. a few million dollars is not going to make a dent. It is going to take the kind of movement it took to make breast cancer a national priority. It is going to take people standing up and making some noise and spreading the news, getting involved. I appreciate the new support from the government but it is not enough. I am angry at the lack of support for children fighting cancer from those who have the power and the resources to truly make a major difference. The 3 large media networks recently announced an alliance to work together to raise cancer awareness and kicked off a campaign called Stand Up 2 Cancer. They intend to donate the funds raised to numerous non-profit organizations. Guess what? they did not mention a single pediatric cancer and have not aligned with a single pediatric cancer foundation. The coverage also did not feature a single child and yet cancer is the disease that kills more children per year than any other. More media attention is focused on what kids watch, listen to, or play with than what is most likely to take their lives. It is for this reason that we are on a mission. It is the reason we have dedicated what for most is sleep time to the Band of Parents and now to the creation of our own Cookies for Kids' Cancer. I have to tell you though that we are just two people who are locked in a battle with cancer to save our son and can only do so much. I don't think anyone really grasps what we face each day and I cannot expect them to since before we were thrust into the world of kids cancer I never gave it a second thought. I think at the end of the day what we and all families facing pediatric cancer endure is simply not something most can comprehend and for this I cannot blame people for not really getting it. In toady's world most are overworked, starved for time, too busy, and self focused to have anything left over for others. I don't think most people are even consciously aware of their lack of empathy. I know as I have been one of these types of people for years. My eyes have been opened to many realities that I was to blind to see before. I am in awe of those who have given so much of themselves to us and to Liam and especially to those who were not close or did not know us before Liam became sick.

Our town in New Jersey is not even aware of Liam's fight outside of a handful of people because we have done everything we can to make it seem like everything is normal and likely because we are not at all comfortable with appealing for help. Interestingly enough if someone was to look close enough they would see that the edges of our lives are showing signs of wear. For example, we have a pile of decking material that has been sitting in our driveway all summer and now that we are back in the fight in a big way it will likely still be sitting there next summer. I keep dreaming that I am an Amish man and my Amish community is going to show up and hold a barn raising like event like they do in the movies and my stalled year old deck project will suddenly be complete. In addition to the giant wood pile, a 20 yard pile of mulch is sitting next to it waiting for me to find time to spread it and this too is also a sign that things are not as they once were or as they appear to be. Small things that have fallen by the wayside. Not a year has gone by in the last 10 where the flower beds and trees in our yard were not edged and mulched but this year the endless war between grass and mulch beds is apparently being won by grass and weeds and I have no time or energy to step in. I could pay to have it done but that would mean that I was admitting that I could not do it because of our circumstances and for some reason admitting such is difficult if not impossible for me. The flower bed at the top of our driveway has been taken over by the adjacent field and is now full of weeds. It looks as if the house might be abandoned and that is not far from reality. My car's inspection certificate expired 2 weeks ago and the easiest solution at the moment is not to drive it. I am not complaining just reflecting on the ways that somewhat irrelevant tasks and needs are ignored and yet they bother me and stress me each time I am reminded of them as they are symbolic of our mess and the challenge we face. I have done all I can to try and keep up appearances as much for my sake as others but I am losing a little bit of this fight each week and it feels to me that as more things slip through my grasp there are that many more things that I have to hold together and make happen for various entities who depend on me. It truly comes down to decision like posting a tribute of child who has lost their fight on the Band of Parents website or cleaning up a flower bed. No brainer from my vantage point. Lately though I have grown tired of running at 200% and tired of watching my wife do the same. We made a conscious decision to give up one of Gretchen's key clients a week ago since the added workload, stress, and frustration was not something we wanted in our life at the expense of precious time together with our kids. Financially it is a setback for sure but there is no doubt for us as a family that it was the right decision. Our hope is that it will also free Gretchen up to focus more energy on what is really important to us at that is to see Cookies for Kids' Cancer make a meaningful impact in the world of pediatric cancer.

Imagine how hard it might be to put a smile on your face and go about life as if everything was fine when you were just informed that one of the families with whom you bonded and who bought your wife lunch several times when they found out she was in the clinic alone with Liam, just lost their son to the same cancer you are fighting. It is sort of like being spun around in a circle about a hundred times and then being required to show no signs of dizziness or better yet punched in the stomach 2 or 3 times but you are not allowed to show any pain. Hearing that someone you personally know has passed away will rock just about any ones world but imagine if you heard about the loss of a child's life about every two weeks on average. A child whose story you know all to well. Whose smile you have seen as they played with your son. Whose parents you know and whom you consider friends. We have chosen to convert this sadness and despair into vengeance and it will be science we intend to use as a weapon against the instigator of such sadness. We hope that those of you who have opted to observe our journey over the last year have seen and read enough and are now ready to do something to help us fight back and to make a difference in honor of Liam and all that he has endured and will continue to endure. Ok enough emotional release for me for a few months. Stay tuned for your regular scheduled programming about an amazing young prince. Just know that his fathers heart aches with immeasurable pain knowing there is nothing he an personally do to make him better short of hoping that the wizards who have been asked to save the young prince have the right magic potions to make him all better. The father has promised his wife, the brave prince, and the prince's little sister that he will do all he can to provide the wizards with the tools they need to be successful and he must not fail.

Food is, once again, the ENEMY

2008-08-10T11:57:00.000-04:00

Thursday, July 31 Picture offering a child every food you can imagine from those you try to reserve and offer sparingly to those you freely encourage, and being rejected. Every food…every one except two are being rejected. And when I say everything, I mean e-v-e-r-y-t-h-i-n-g. Can you imagine the absurdity of rattling off every enticing sweet treat you can think of only to have the response be, “No Thanks?” The two foods he will tolerate eating are blue corn tortilla chips and home made Belgian waffles which, thankfully, are full of butter. It is so, so, so frustrating to see the weight Liam put on his body quickly evaporating. In two weeks he has gone from finally having a big enough stomach to be able to wear size 4T clothing to being back in 3T. I almost can’t bear to look at him naked. Granted, he doesn’t look as badly as he did when the skin literally hung off his body, but to me he is painfully skinny. And of course when Liam is at his home in New Jersey, his wardrobe of choice is nothing so there’s no hiding from the change in his body. I have to keep reminding myself that this is a short diversion we’re on, it’s temporary, we’re going to be back on track soon, and he was in the 75 percentile for his weight two very long weeks ago. The ONLY thing we can get him to “eat” consistently is Pediasure chocolate drinks. We call them chocolate milk and Liam loves them. And, after doing some research, we found out that if he drinks 32 ounces of Pediasure a day, he doesn’t even need to eat solid foods. How great is that? That’s right…food can be completely replaced with Pediasure. So, we follow him around pretty much all day and all night with a cup in our hand encouraging him to drink a sip every few minutes. There are times he drinks and times he looks at us and thrusts out his fingers and says, “In two more hours I’ll drink!” And, of course, we’ve had lots of conversations about the role of food in helping make a body grow, veiled threats that he won’t become a big firefighter unless he eats, and how his engine won’t run without gas to keep it going…but they all fall on deaf ears of a little boy who simply has no interest in food.

We’re in Hunker Down Mode

2008-08-10T11:54:00.000-04:00

We made it through chemo officially on Thursday with a quick trip to the hospital on Friday for a blood draw to get his counts and see how his electrolytes were doing to hopefully avoid a heavy backpack of fluids for the weekend. From Thursday afternoon until we got back to the hospital on Friday, we were on Liam every few minutes with a cup of Pediasure encouraging him to drink. “You don’t want a backpack, Liam, do you?” “No – I HATE backpacks!” But the way he says the word hate is almost sweet. His hate doesn’t have years of living and cynicism behind it. His hate is more of an annoyance or something that prevents him from doing something. He is getting more savy about the hospital – “Is this a quick trip or a long one?” “What are they going to do?” “Are there going to be any owies?”

We retreated to New Jersey for the weekend and watched Liam emerge from what we’re now recognizing as his hospital shell. He doesn’t talk as much when he’s doing hospital time, he is still his sweet and inquisitive self but there’s something just a little bit off. The only time he emerged from his shell was on a visit to see Kristine and Pam at the CBS TV station on Thursday where he literally darted around the newsroom, studio and control room while discovering the magic of television. You never would have known on Thursday evening that he had just been tethered to an IV pole for four days receiving chemotherapy. It was at the TV station that we heard the “These cameras are great!” and squeals of delight we associate with Liam to come out. It was also troubling to me, at times, seeing him be more guarded with his interactions with people which makes me wonder if it’s a self-defense mode of his to become less engaged while he’s dealing with hospital time. He has been full of questions about why we have to go to the hospital and wants to know more about is happening, but he hasn’t asked the big question, “Is there something wrong with me?” We are still in the mode of answering every question thoroughly…but only answering the immediate question. Thank goodness it’s summer and he isn’t going from being in school to being in the hospital. I think if it was the school year and he was not able to go because he had to be at the hospital it would force more questions from him

Some Housekeeping Items

2008-08-02T19:30:00.002-04:00

Liam will need blood and platelets beginning next week. If you would like to donate either, please contact the blood donor room at Memorial Sloan-Kettering. Liam's blood type is O-. If you're not his blood type but donate in his name, he will receive a blood bank "credit." Blood type does not have any impact on platelets so anyone, as long as you pass Memorial Sloan-Kettering's long list of questions, can donate platelets and be used by Liam regardless of blood type. Here is a link with more information: http://www.mskcc.org/mskcc/html/11698.cfm

- We have been asked quite frequently, "what can we do to help?" At this point the thing we need the most is for people to join us in our effort to raise money for pediatric cancer research. And knowing how great the need is for research money for pediatric cancer funding to make up for the disparity between other cancers, and that pediatric cancer is the number one disease killer of children in the U.S....why wouldn't we? So, how can you help? In the fall we are launching Cookies for Kids' Cancer and are partnering with a national magazine to spread the word far and wide. The goal is to have individuals/businesses/organizations/churches/synagogues/schools/doctor's offices/clubs/societies/fraternities/sororities/students fulfilling community service commitments hold bake sales in their community in support of pediatric cancer research. We will have more details in upcoming weeks, but if you're interested please send an e-mail to us (gretchen.holt@gmail.com) so that we can send you information. Also, in September all 47 Lord & Taylor stores will be selling Cookies for Kids' Cancer cookies in the children's department as a fund raiser. If you live near a Lord & Taylor, stop by and visit their bake sale as a show of support beginning September 13th. We need people to be motivated enough to get involved in whatever way they can. Every person can make an impact and help institute change. Every child fighting cancer deserves a fighting chance and together we can and we will make a difference.

A very humble thank you for your continued love and support.
Gretchen, Larry, Prince Liam and Princess Ella

Thursday July 31st

2008-07-31T09:48:00.002-04:00

Liam checking out some trains

Playing with one of his favorite medical tools which is an endless source of fascination

It’s not all medical play…in his room in the Day Hospital he insists on having two farms and a doll house borrowed from the play room displayed on his bed barely leaving any room for him.

Liam’s vital signs being checked by “Cowboy.”

And you thought you had a long day?

2008-07-29T08:28:00.000-04:00

Day 1, cycle 1 of 2.
2:17 am - After a 12 1/2 hour day at the hospital, we finally arrived back at our family cocoon much to Ella's delight. For Liam it was a day filled with discovery, boundless energy and frustration being closely tethered to an IV pole. For me it was a day of creativity, determination and hope. And in the last hour it has been a day of cleaning up throw up from the bed, consoling our Prince who hates to throw up especially from a dead sleep, starting a load of laundry to clean duck puppy and big puppy who are covered in grape juice throw up, cajoling him to take the pill that will make the throw ups go away, and feeling awful for him. And now he's in a fog, watching Caillou with no sound, and occasionally whimpering. Poor baby.

We must do.

2008-07-26T10:37:00.000-04:00

One of my favorite authors is Maya Angelou. Her words penetrate my soul. I saw a quote from her that resonated as we’re about to embark on two additional rounds of high-dose chemo to kill the bastards. (I’ve toned down the vernacular used to describe cancer cells, although it still rings in my head.) The quote is short but simple.

"Nothing will work unless you do. "

So, we are going to do.

The final pathology report came in late on Wednesday. It was awful to read Dr. Kushner’s classic short and to-the-point e-mail about the report. I believe it was something like, “Final pathology report shows (+) neuroblastoma cells - relapse.” And then there were a few niceties to temper the tone of the e-mail, but the initial shock of reading those words crushed my spirit. So many pictures came crashing into my head of things we’ve endured while going through the regimen of chemo as well as a searing pain thinking about what Liam will face…once again. The mental energy it takes to keep your spirit up and entertain an incredibly inquisitive little big boy is not physically but mentally exhausting. I’ve hung up my Sigourney Weaver persona from Alien battling an extraterrestrial creature threatening a child. I don’t want to wear it again, in fact I’m not even sure it fits me, but with the confirmation of the news we already pretty much knew…I accepted that I needed to put the suit back on and get to work. But I gave myself permission to have one really good cry before donning the muscle t-shirt.

During a long but positive meeting with Dr. Kushner on Thursday, we discussed a lot and even laughed a bit. I feel comfortable enough with him to tell him how warped I think he is when he describes the powerful chemotherapy agents Liam will be receiving as “no big deal.” I can only imagine what he’s like at a cocktail party. There were no tears during the meeting and in the end I think we wound up giving Dr. Kushner, Ester and the team a pep talk. They clearly feel awful for us having to deal with this. But we’re all dedicated to getting Liam where he needs to be – CURED – and we’re ready to do it. And, we’re all incredibly grateful that this tiny, tiny little thing that is smaller than ½ of the nail on my little finger was caught when it was…and that it hasn’t grown since April. One thing we discussed was working as hard as we can to get Liam to the place he needs to be so he can go to school on the first day. It’s going to be tough, but there’s a chance we can meet the September 10th deadline. The next question, though, is if I should hold back on him going to school since he won’t have hair and likely no eyebrows and eyelashes. Will his classmates notice? Will they be mean or will they be too young to notice or know the hurtful words older children have in their vocabulary and spirit? Will Liam even care? He seems to roll with everything and maybe he’ll roll with this, but he is older. Do I need to give him more of an explanation this time? Do I go with the, “The doctors found something in your blood that they wanted to get rid of” line but this time add an explanation about why his hair is gone, something he didn’t seem to even notice last time? I’m trying to remember how long it took for his hair to grow back the first time. I think it was close to three months, but I just don’t remember. I know he had hair in late September when we limped to the beach house Liam refers to as “his beach house” last year, but how long before did he pass for having a head of hair? Maybe I just need to get him a whole lot of hats, especially more of the “Life is Good” hats he treasures that a Liam supporter sent. And then there’s the uncomfortableness of having to explain Liam’s situation to a new group of people. Which ones will be so shocked they can’t say anything? Which ones will be cool enough with it that they can talk to me? This year we have double duty with Ella starting school as well. The parents in her class will need to know about Liam’s situation so that their children don’t bring anything to school that Ella could pick up that, in turn, Liam could pick up. OK. OK. One day at a time…let’s not think that far ahead.

The game plan is two rounds of high-dose chemo in a combination his body hasn’t seen before. His body hasn’t received chemo in nearly 15 months which, according to Dr. Kushner, is a good thing because it will deliver more of a potent punch. Between the two rounds of chemo some radiation is being planned. Kidneys and radiation don’t do well, but given that the area around his kidney is where the original tumor site was and where cancer cells were once again discovered, it looks like we need to go back to that area again. The benefits outweigh the risks in the high-stakes game of giving Liam a full and fulfilling life.

And how is Liam? Amazing. He had a play date with his gal pal Dylan on Wednesday and Thursday. He played at Appleseeds with Ella. He went to science class and learned about the La Brea tar pits and talked and talked about dinosaur bones. He took a music class at Appleseeds and, I heard, danced and danced and danced. Almost hour-by-hour you could see him regaining his strength to pre-surgery levels. And on Thursday, he ate…which is a very good thing. We’re trying to cram in as much as we can knowing that beginning Monday we start our quarantine period…the one where someone sneezing across the street brings sheer panic as you play a cut-throat game of “Frogger” trying to avoid germs as you hop from lily pad to lily pad.
We came back to New Jersey on Thursday night to give Liam and Ella three days of fun at the “country home.” At 8:20 this morning, they were both outside playing and doing what every child should be doing during summer vacation…discovering. And they kept discovering until we finally put them to bed at 10:30 p.m. after lying in a tent, looking at stars and listening to frogs. Today when I was putting Liam for a nap, he asked for a Leo story. Normally Daddy is the Leo story person since it’s his special activity that he does with Liam, but there’s one Leo story that he asks me to tell him – Leo Goes to School. I’m sure it’s because I’m the one who primarily takes Liam to school. So, I told him the story of Leo going to school which essentially is a detailed, step-by-step dissertation of what Liam’s morning routine. If I forget something, Liam reminds me to include it. He wants to hear every detail from what store windows he likes to look at in the morning to what he Leo wears to school. After today’s story, he asked why he hasn’t been going to school. I explained that it’s summer vacation and that no one is in school right now and even Jean isn’t at school, something he found incredibly fascinating. (I think he thinks she lives there.) We talked about how he’ll have a different teacher in the fall and there will be different kids in his class, new friends to make. And then he turned to me and said, “I miss my friends.” And tonight when we were in the screen house at 9 p.m. doing craft projects with a brave little boy who was not tired (Ella was inside taking a bath with Grandma after peeing on her leg when she was outside), he looked at us and again said, “I miss my friends.” And when he asked who he missed, he named the first two children he met at school. Liam, my dear sweet prince, we’re doing everything we can to get you back to your friends at school. Everything we can.

Cat and Mouse

2008-07-23T15:31:00.000-04:00

We’re in waiting mode…waiting for the final pathology report. Pathology is literally looking at every cell in the 1 cm sample taken. Every single cell. Once we have the pathology report, Liam’s team of dedicated doctors will develop a game plan. It feels like a giant game of cat and mouse. The mouse tries to hide and we have to find it before it does any damage. I’ve never liked mice.

Liam had his post-op visit on Tuesday. He walked into the hospital pushing his crane. He collected four necklaces to wear from the treasure chest in Dr. Kayton’s office. The necklaces have a silver pendant of an animal. He has a turtle, chimpanzee, elephant and bird that are secured with a leather rope. He loves them and wore them all day. He looked pretty cool. You’d never know by looking at him what he went through a few days ago.

After a glowing post-op visit that left people shaking their heads in amazement of how quickly he bounced back, we visited the Childen’s Museum. He played and explored and discovered for hours…just like every other child. He loved hanging out in the Dora & Diego exhibit, danced to the Diego theme song playing over and over and over again, and especially enjoyed spending time in Boots’ tree house. His favorite was sitting behind the wheel of the fire truck which he drove with gusto. And when we were leaving, we stopped in the gift shop where Liam’s first concern was picking out something for Ella.

He did, though, complain once yesterday. He complained that his incision was itchy. But after showing him how he could gently scratch what looks to be a 4” incision, he was happy.

The Other Shoe Did Not Drop

2008-07-21T10:49:00.001-04:00

Nobody said this was going to be easy. Friday’s news wasn’t what anyone wanted to hear, but it’s OK. We’re all OK and we’re going to be OK. Unfortunately this is not the speed bump that we hoped surgery would be. Instead, it’s more of a pot hole. It’s jarring, disturbing and leaves you shaken but we’re still moving forward and nothing has changed. After a very eventful day and night of broken sleep on Friday, Liam woke up early on Saturday morning in the Pediatric Observation Unit (POU), examined and assessed his body with the mass of wires attached, IVs inserted, bandage on his side, and declared he wanted to go home. I told him that in order to go home he’d have to walk, eat, and go to the bathroom. It was about 7:30 a.m. At 8:30 a.m. he announced he was ready to take a walk…naked. I convinced him to at least put on a pair of Crocs and dinosaur underwear. After disconnecting him from the tangle of wires attached to various points on his body that monitored everything from his heart rate to the amount of oxygen levels, I very carefully lifted him off the bed to stand him up on the floor. He has an incision in his abdomen and any contraction of his stomach muscles is extremely painful. He kept saying to me, “don’t hurt me, Mommy, don’t hurt me.” It broke my heart to hear him say those words. In a million years, I would never do anything to hurt my sweet Prince. Never. And then he was up and walking to the surprise of the POU nurses who happened to be two “old” friends, Reece and Dani. It was less than two months ago that Reece and her family were celebrating Liam’s birthday with us and now she’s caring for him. Liam stood straight up and gingerly walked to the end of POU unit, turned around and walked to Reece’s desk where he asked if he could sit in mommy’s lap and play with her computer. So we sat together and he pressed buttons on the keyboard. He spent the rest of the morning watching Curious George, reluctantly drinking water and sucking on his beloved pacifier. A few hours later he announced he had to go pee pee and asked me to get him out of bed so that he could shuffle his way to a toilet in the room. This is what Larry and I truly love and admire about our son. He has an indomitable spirit. You can’t bring him down. He is truly our superhero. He is amazing and we are honored to be his parents. He is one of kind.

When our dear friend Fraya, who Liam calls Aunt Fraya and who made Liam’s spectacular birthday cake, arrived on Saturday morning to keep us company…Liam croaked out via his anesthesia-induced voice, “Aunt Fraya – There’s a chair right over there for you to sit.” That’s our Liam…always more concerned for everyone else.

I had a long talk with one of Liam’s oncologists on Saturday and while it was a very tearful conversation for me, it left me feeling much better about the situation. I asked the tough question that no parent should ever have to ask and was assured this was not our situation. The whole thing is really quite bizarre, not that bizarre makes it any easier. Liam has sailed through a very difficult treatment regiment and risen to every challenge. He has had no evidence of disease (NED) since last June. His most recent tests performed July 9 – 11 showed that everything was still status quo. The LDH levels in his blood were normal, his urine markers were normal, his bone marrow was clean, his MIBG scan was clean, and yet here we are in a place we never wanted to be but one that many, many families have traveled down before us. We’re certainly not alone. And the strangest thing is that this spot on his right kidney was there in April and stayed the same between then and now. As anyone who knows neuroblastoma understands, this certainly is not characteristic of the disease to do nothing. If I take a glass half empty view, this would be unbearable. If I take a glass half full view, we are incredibly lucky to have caught whatever this thing is in such an early stage that it doesn’t even register on any test. This is a manageable bump. This we can deal with. This we can handle. This, though, also serves as yet another reminder of how much we need to take e-v-e-r-y day as an incredibly special gift. Time is the most precious commodity and it needs to be celebrated and savored. And not knowing what the future holds, something none of us knows but that has a special poignancy with us, we’ve decided we need to step up our commitment to raise money for pediatric cancer research and cherish even more every day we have with Liam and Ella. This news didn’t defeat us, it rededicated us.

During our conversation, I learned that the frozen slide of the dime-sized sample taken consisted of 95 percent “junk” (scar tissue, part of a cyst, and other post-op stuff), but in that tiny sample were a few rogue cancer cells that I’ve named, “Little Fuckers.” So now we need to do, as Dr. Kramer termed it, “mop up.” Even though Liam is technically NED, we now know there are still cancer cells that need to be eradicated. Liam is likely facing two rounds of high-dose chemo. He’ll lose his hair, again. We’ll need to traverse the crevasse between having no white blood cells and the risk of germs and infections, and having those precious white blood cells, again. He’ll feel awful, again. His energy will be wiped out, again. He’ll get skinny, again. But there’s one thing about Liam we know will not happen. He will not complain. He never does. He asks an endless litany of questions but he never complains.

We arrived home early Saturday evening and Liam asked to be on the couch. Within an hour of being home, a phone call came from Fireman Tommy. Would Liam like visitors? And shortly after 10 firemen were in our apartment visiting Liam and two fire trucks were parked out front. Liam smiled with excitement and true happiness to see his guys. And as I looked at “The Guys,” I thought about how Liam too is a firefighter. You never know when you’re going to be called into battle but when you are you go. You just go because it’s what you have to do. It might be scary and it might seem like an out-of-control fire, but it can be won if you fight with clear plan. And as Liam had his guys circled around him, the ladder truck raised its ladder for him to see from the apartment window. It was right there ready to join the fight.

Throughout the rest of the weekend, Liam rested, we loved him, encouraged him to walk, eat, drink, and tried to refocus our view of the situation. It is difficult, yes, but our precious son is still our precious son and he’s very much here with us now which is cause for celebration every day. True to Liam form, he refused to take any pain medication. He simply refuses. He has a very Zen-like way of dealing with pain. He breathes deeper and gets very quiet, but he doesn’t cry and doesn’t complain. He just deals with it in a very private way. Getting him to eat is already becoming a challenge, but we can deal with it.

The day before his surgery we spent at our home in New Jersey for a day of swimming and bike riding. Liam has made amazing strides in the pool this summer. Two weeks ago he started jumping from the edge of the pool which means getting his head completely wet, never a favorite thing. And the day before he was plunged back into the hospital, he taught himself to put his face in the water and hold his breath and do a running jump into the pool. We cheered. He smiled ear-to-ear. We told him he was amazing over and over and how proud we were of him. He did it on his own and was delighted with his new-found skills.

On Saturday morning when he was walking at 8:30 a.m., the first child in the POU to walk that day, I again told him he is amazing. And Sunday night when we were putting him to bed after a day that included a fireman playdate, walking, visiting with Grandma and recuperating, he looked at us and said, “I am amazing.” Yes, my dear sweet, sweet son, you ARE amazing.

We can deal with this. We have to. Liam wants us to.

Update July 18th 6:00 PM

2008-07-18T19:51:00.000-04:00

It is with great pain that we musttell all of Liams family, friends, and admirers that the results of todays tests were not as all of our hearts had hoped. The Kidney was found to have a small dime sized tumor present. Pathology quickly confirmed it was neuroblastoma.

Gretchen and I have only felt this kind of pain one other time, the day Liam was first diagnosed. Liam is resting and stable from his surgery and we are waiting for his room in the POOH unit to be ready. It will only be a few hours before he will be made to walk and a little more than a week before he will begin another protocol with chemo being the initial therapy. It is so unfair and I want more than anything to be able to shoulder this burden and to take on his current pain as well as the pain he must yet endure in his continued fight against a ruthless, miserable, coward of a disease. Liam showed bravery and courage today like no 4 year old should ever have to display. Liam, Gretchen, and I thank you for your well wishes and hope on this most difficult of days for our family.

Update July 18th 2:15 PM

2008-07-18T14:23:00.000-04:00

Surgery just started and he is stable and doing fine.

Conor for Gretchen & Larry

Update July 18th 12:30 PM

2008-07-18T12:31:00.000-04:00

Larry just emailed to say that surgery has not yet started but will within the hour.

Conor for Gretchen & Larry

July 17th Surgery Update

2008-07-17T23:21:00.001-04:00

This is just a quick update to say that surgery is scheduled for 9:45 tomorrow morning. I will post any news as soon as it is available.

Conor for Gretchen & Larry

With Heavy But Hopeful Hearts....

2008-07-15T23:53:00.000-04:00

I wanted to take a minute to update everyone on what we have learned this week as it relates to our dear Liam. During his routine follow up scans (every 90 days) an abnormality appeared on the CT scan. Further review and a look back at his April scans revealed that this small abnormality, that looked like nothing more than a shadow, was present then as well but had not grown in the interim. The fact that it was not seen on his April scans was not ideal but because it had not grown since then it is considered a good thing. It was enough of a concern though to his doctors that they ordered two additional types of scans to see if there was truly something present and if so to try and determine what it is. The scans all confirmed that there is some small growth present on his right kidney but they were inconclusive as to what it is.

The concern stems from the fact this is the same kidney that was entangled in his original tumor, and though only about 3% of kids relapse in the original tumor location, its existence is unexpected and unwelcome. All of the other markers monitored to look for signs of relapse like urine, LDH, and even the all telling MIBG scan were negative and show no signs of new disease. Yet the fact is all of these markers can show negative and new tumor growth can be present, so for this reason Liam’s team of doctor’s feel it is necessary to go in and see exactly what this 1-2 centimeter spot truly is. You might wonder why such an aggressive approach is being taken if no other signs point to a relapse. The reality is Liam’s type of cancer is very aggressive, as many of you know, and the doctors at MSKCC do not take anything for granted when fighting this beast. When the risks are measured it is far riskier to leave it unchecked and to give it any chance of spreading if it is indeed a new tumor. It is a decision that is more difficult for us to make than I hope any of you ever have to experience first hand and yet the decision in a sense is made for us…we have no real choice.

Our hope is that it is nothing more than scar tissue since this kidney took quite a beating from the tumor and the 11 hour surgery last year. The surgery is scheduled for this Friday and Liam will be in the best surgeon’s hands. We are fortunate in that Dr. LaQuaglia will be doing the procedure and is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Liam for 11 hours straight to resect his tumor last summer. It is likely Liam will be in the hospital from 3-7 days depending on how everything goes. If Liam has anything to say about it I think it will be closer to 3. Your support and understanding during this very difficult time will be appreciated more than you will ever know. We expect this to be nothing more than a small bump in the road; anything else is just simply unacceptable for all of us. Please pray and and send good wishes to Liam as our dear prince endures yet another unfair challenge. A challenge he is far to young to endure alone and one that breaks our hearts to see him have to face just as he was making such amazing progress on so many fronts and so full of wonder and energy.

With hope,

Larry and Gretchen

Monday July 14 Update

2008-07-14T16:23:00.000-04:00

Liam eagerly went to summer camp at school today carrying a pink bag with his latest treasures - three "Harry the Dog" books, a small book of maps, his favorite black rubber ball that bounces really high, his hand-held Leapster game and his key ring that is actually two key rings - one with three keys and the other with two keys - connected with a rock-climbing clip to make one really long key chain. The keys are all blanks we got at the hardware store that have pictures of Mickey, Pooh and other fun characters on them. He loves his keys and walks around jangling them whenever possible. I forgot his lunch and had to buy him lunch at the corner deli which consisted of a banana, chocolate milk, travel-size box of honey nut Cheerios, and a box of raisins. He said it was the best lunch he ever had. When I came back to drop off his lunch, he was happily sitting at a table squeezing a plastic cup with a little bit of water in the bottom to see what would happen. Yes, it spilled. He spent the weekend jumping in the pool - a new discovery for him - and doing it over and over and over again. This is the guy who hates to get his face and hair wet so for him to jump into a pool was really quite impressive. And of course Ella, who can never be outdone, followed suit and was also jumping in the pool to squeels of delight.

The thing showed up on the MRI but it's still all very inconclusive. In essence, we have no idea what this is but surgery is being discussed because there's enough doubt that we can't rule anything out. The factors in the plus/minus column are equal which makes for an even more puzzling set of circumstances. The one thing we know for sure is that it was MIBG negative which is a very good thing. There are other good things but we can't deny the fact that there is something there that needs to be investigated.