At the age of 11, Daniel was diagnosed with osteosarcoma in his right fibula. Through two years of treatment, 15 surgeries, 20 rounds of high dose chemo, sepsis, over 130 nights in the hospital, a tortuous clinical trial, radiation, and more, he smiled, and smiled and smiled. He never gave up. Daniel died from osteosarcoma on August 28, 2016, at the age of 13.
Daniel could light up a room with his smile. His karate sensais called him Mr Smiley because he couldn’t stop smiling even when he was testing for his black belt. He loved sports and hanging out with friends. He was the captain of his basketball team. Even his teachers liked him in spite of a distinctly mediocre academic record. He was a charming and thoughtful goofball.
My smiling, charming, happy kid was the toughest, bravest person I have ever met. All through treatment and while he was dying, Daniel would say to me, “Look for the light, Momma. Look for the light.” He repeated that phrase like a mantra. When Daniel was dying, he worried about his sister Sara and me. He told me that I had to keep going. Because I love Daniel and because this is the only way I have to take care of him, I have continued my osteosarcoma work. I taught myself genetics so that I could do what I do best: analyze data, the genetic data of his tumor. In doing this, I identified 2 drugs which targeted mutations in his tumor. I persuaded his oncologist to prescribe them. Instead of dying within a couple of weeks of his terminal diagnosis as everyone expected, he lived almost 6 more months, 6 precious months filled with life.
Please join me in continuing to fight osteosarcoma. For Daniel.