Liam I miss you...

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

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

Celebrating Prince Liam the Brave

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

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.

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...

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