As I was about to watch my five-year-old undergo chemotherapy, I had a vivid dream that calmed the fear of the unknown. In my dream, Gavin’s neurosurgeon stoically walked out of surgery, telling us confidently, “I got all of the tumor.”
This dream, although it would not be realized as I’d hoped, helped each time I watched poison pump through my child’s veins. It helped every time he got sick, or when clumps of his hair fell into my hands. I thought of the day he would be cured. I thought of the day he no longer had a tumor in his brain and could just be a kid. After chemo, Gavin was going to have surgery. He was going to be cured.
A cure became a distant hope when the tumor grew rapidly. It became impossible when after four craniotomies, the bully in Gavin’s brain grew so fast that all progress was erased. Our nightmare—our reality—was that Gavin was dying.
With no further options, we followed Gavin’s faith. He told us, “Mom and Dad, please don’t give up on me, I’m going to make it.”
As parents, we knew medical history told us otherwise. Intracranial Growing Teratoma Syndrome that cannot be fully removed results in death. Nobody had survived before. But Gavin told us he would.
Leaning on Faith
It is because of Gavin’s faith that we were able to tell his doctors, “We are not ready to give up.”
We were asked if we wanted to continue with surgery, knowing it cannot cure him and may cause more harm than good. We said we wanted to keep fighting, and pursued a clinical trial drug, one that had not been given to a child before. Gavin would be the first.
It stabilized his tumor—the first miracle. Soon after, his neurosurgeon found a laser that could be used to treat the tumor, and little by little, the tumor melted away. The second miracle—it saved his life. Four years after I dreamed Gavin would be cured, he is in remission.
The Tip of the Iceberg
Throughout Gavin’s battle, I used CaringBridge to write when I felt scared, broken and empty. It was my therapy to write the things I could not bring myself to say. The moments I needed prayers but Gavin needed me—I was able to write it out, and move on. Some of the things were unspeakable and stayed deep in my soul, to be dealt with later. I was only feeling the tip of the iceberg, so that I could continue to steer the ship.
In my memoir, Be Strong and Brave: How a child’s faith saved his life, I was able to write the story the way I felt it, every heartwrenching part. Rather than the tip, I write about the depth of the iceberg of emotion and fear. I share Gavin, seen through my eyes, and how his faith pushed me—pushed all of us—to fight. That fighting—that will to never give up, is the reason he is alive and well today. His faith created miracles.
Here When You Need It
Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.
Nicole Pierson and her son, Gavin, have been an important part of telling the CaringBridge story. Her son’s fight with “Joe Bully,” a cancer in his brain called Intracranial Growing Teratoma Syndrome, has inspired all of us here, and many of those following along at home throughout our awareness campaigns and through her past contributions to our blog.