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...

Larry

Pictures.

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.

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.

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.