Pediatric Cancer

Apr 25

"We’ve been fighting this for thirteen years. Sterling has a brain tumor in the center of his brain where the optic nerves cross. It’s inoperable. Our lives center around keeping the tumor from growing. That’s what we do. We’re here today to pick up a new experimental medicine. Sterling’s had over one thousand seizures. I joke that this whole experience has made me an involuntary Buddhist. When you live in a world of one thousand seizures, you have no choice but to live in the present. You’re jolted out of your mind every few minutes. And you learn about compassion. Having a special needs child has opened me up to the compassion of other people. There are so many people who are willing to help. When we first discovered the tumor, I sent Sterling’s scans to every hospital. I can’t tell you how many doctors gave me their time and didn’t charge a thing. Zero billable hours. Can you believe it? It was like going snorkeling for the first time, and discovering a whole new world of color that I didn’t know existed."

“You have to have faith and keep working. Back in the 70’s and 80’s, all of us were hoping for just a single survivor of stage four neuroblastoma. It was a rare cancer and we just couldn’t cure it. But eventually we figured it out. Recently over five hundred people attended a party we threw for neuroblastoma survivors. So change does happen. It just happens slowly. I have a colleague who lost hope recently. He’s been working on a brain tumor called DIPG, and he’s had nothing but three decades of negative outcomes. Dozens and dozens of failed trials. We just couldn’t touch the tumor because it’s in the main center of the brain. But my colleague stayed optimistic. He kept cheering us on. But he finally lost hope. After three decades of losing kids, he asked to not see any more DIPG patients. Then guess what happened. We finally have a survivor on our hands. Our neurosurgeon Dr. Souweidane figured out how to insert a catheter directly into the tumor. And we now have a girl that is 3.5 years from diagnosis. It’s still early, but it’s promising. She plays tennis. She plays violin. And she is gorgeous.”