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."

"Sterling is the sanest one in our family. He’s our leader. He gets to be himself. If we were ourselves, we’d be rather useless because all the time we feel like disintegrating. We call him the Love Bug. He is always loving and happy. Every morning he sings a song while we walk down the driveway. It goes: ‘Another new day, coming my way! I can’t wait to go to school today!’ I look at him and think, ‘What is my problem?’ Then I tell myself, ‘Just follow the leader.’"

"I grew up around nature. I had a wonderful family and a great life and it was so easy to be a believer. Then over the course of a single weekend, I learned that my one-year-old son was blind, had a seizure disorder, and a brain tumor. I remember I went to a beach, and a storm was coming in, and I just sat on the edge of the ocean and I wailed. For an hour I screamed in the pouring rain. That was thirteen years ago, and there hasn’t been a moment of relaxation since then. We’ve researched everything. We’ve tried everything. Anything to keep the tumor from growing. And the longer we’ve gone on, the more we’ve tried, and the narrower the choices get. There is nothing I won’t do to save my child. There is not a doctor you can keep me from. I’ll drive across the country for a single conversation. But I live with such pain. It’s not rocket science. Every day could be the day that I lose my child. But I’m trying to look up. I’m trying to have gratitude. And I’m trying to keep my faith."