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.
