Wednesday, February 1, 2012
Today was a very long day at the hospital, but it was also a great day. I had my moments where I wanted to scream and cry for all of the children like the teenager who lost her leg or the tiny baby in his crib getting his first toxic infusion, or Ty, who screamed and carried on as he always does when it's time for the needles. But then it was time for Ty's bi-weekly weight and he gained a whopping TWO POUNDS! This has never happened before. When Ty was diagnosed in August 2010 he weighed 13 kilos, and in May he weighed only ten. Today he was 12.7 (28 pounds). We were elated. I hope he can keep it up! Maybe it's the corn on the cob.
Ty is finally able to enjoy his time at the hospital. His chemo is tolerable and he is genuinely happy playing games or arts and crafts in the toy room. The toy room is in the middle of the large waiting room and surrounded by glass walls. For over a year, I used to peer into that room and envy all of those children. I used to be so upset that my adorable little baldie was too sick to play. Too sick to even move. Today, we played Cootie, we played Trouble and we made a cowboy hat for Gavin (like the one that Woody wears in Toy Story). Ty is a sweet and thoughtful boy.
This afternoon we met with Ty's neurosurgeon, his wonderful nurse practitioner and his marketing team. Without sharing any premature information, I just want to say that Dr. Jeffrey Greenfield is on to something very big. He is doing amazing things in the world of pediatric brain tumors and we are so excited to be part of it. If you are aware of any child who has suffered or is suffering with brain cancer, please send them to Weill Cornell for a consultation.
As most of you know, I have always felt that I need to DO SOMETHING! That there needs to be more awareness for childhood cancer, and sharing Ty's story is just one teeny tiny way of making me feel better about this horrific circumstance. Lou and I always wanted to leverage Ty's experience in a really big way. How can we make "Gold" the next "Pink"? But at the same time, we are parents to a very sick little boy and we are overwhelmed. Teaming up with Weill Cornell on this project is simply perfect. I can't wait to share more information with you as things progress, but I just wanted to let you know how excited we are. We finally feel like we are ready to be more active toward the cause and it feels really good.
Tonight, my heart feels calm. Whether or not a good night's sleep is in my future is still questionable, but at least I am at peace. Goodnight everyone. XOXO from Ty and all of us.