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.

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."

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.

Sincerely,
Larry and Gretchen Witt