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Saturday, September 18, 2010


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!

(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!


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.

Thursday, August 26, 2010

And the clouds give back every time they cry..

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

Sunday, August 15, 2010

Friday at Lincoln Center

Finally. An Update. Friday, August 13th.

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.

Wednesday, July 21, 2010

Swimming on Wednesday - Surgery on Friday

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...


Thursday, July 15, 2010


What Liam has been up to these days.

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.

Monday, June 14, 2010

Update on our Prince

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.

Sunday, May 23, 2010

Commencement 2010 - Part2

Part II

Commencement 2010 - Part1

Mother's Day

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.

Wednesday, May 19, 2010

5-19-10 Update

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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."

Monday, April 5, 2010

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

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.

Larry and Gretchen Witt

Saturday, March 13, 2010

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.

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Glad/Cookies for Kids’ Cancer TV Commercial: http://www.youtube.com/gladtogive