My work in this area has marked me in so many ways, or more correctly stated, the kids and families have marked me forever. They continue to speak to me as I pursue research in trying to understand and make living better for children and families experiencing cancer.
After two wonderful years in remission, our worst fear came true. On December 1, 2012, very early in the morning, Erik climbed into our bed, complaining that he wasn’t feeling well. After a short time, we noticed that he was rapidly losing control over his balance and neurological functions. He lost his ability to speak and then could not stand. The entire left side of his body was effectively paralyzed.
“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend”—Albert Camus.
Most of these questions, I learned, were unanswerable. The point was to listen, to be there, to not be afraid of the sadness and the unanswerable questions. To show up in the face of something terrifying and somehow try to convey to these kids and parents a feeling of peace.
On this first day of school, my niece’s 15th birthday, a week from the 2-year mark in this dedicated month, I sit here in my office, tears streaming down my face, just wanting my girl back.
I have a dear friend, who at 37 thought she would never have children of her own. Then along came dear little Taylor, weighing in at 9.2 lbs. She looked perfect – all her fingers and toes. Every parents dream, right? Taylor was diagnosed with neuroblastoma.