How My Neighbor's Son Inspired Me to Write About Childhood Cancer
My experience with pediatric cancer began with a plea for prayers from a neighbor whose son had fallen ill. The call for help came by email, when I was still living in Park Slope, Brooklyn, but I didn’t know these particular parents or their child; they were just people who lived in my neighborhood. People like me. With a child like mine.
I remember clicking on the link to their blog. It was 2006, and blogs were a relatively new thing back then. At first, I found it hard to follow the medical jargon in the mother’s message. Then I got to the word “cancer” and my breath caught. This boy was only 4 years old. How could something like this happen? I’d always thought of cancer as a grown-up disease, not something that affected children. Well, I was wrong. Cancer is the number one cause of death by disease of children in the U.S.
In the weeks that followed that startling discovery, I read blog post after blog post written by pediatric cancer families, usually while crying into my laptop. My first child was 3 years old at the time. His little round face was still pudgy, his eyes huge — he was just a baby. So was this child with cancer. The statistics I was reading were terrifying. At the time, neuroblastoma had a 30 percent survival rate (and that’s just 5-year survival). It almost always relapsed. And it was such an aggressive cancer, there was no such thing as a cure. And yet, less than 4 percent of the National Cancer Institute’s budget goes to all childhood cancers combined.
I tried to imagine what that would feel like, facing a future without a cure for my child. I would be desperate for answers, for information, for the right path to take. I clicked from one blog to the next, witnessing how pediatric cancer families shared detailed, minute-to-minute accounts of their experiences in the desperate hope that their collective knowledge would lead to answers. And awesomely, incredibly, it has.
When one of the leading pediatric cancer research hospitals said they needed funding to continue their research into groundbreaking antibody treatments, pediatric cancer families united to literally make that happen. That effort was the beginning of a 501(c)3 non-profit called Cookies for Kids’ Cancer, which I supported as a volunteer baker in its founding year. In those early days, I was just grateful for a chance to do something to help, even if it was as little as baking cookies in a crowded rental kitchen space along with dozens of volunteers—people I didn’t know at the time, but whose stories never left my mind.
When I wrote my debut novel, “Counting Thyme,” I didn’t set out to write a cancer book. I wanted to write about family, and siblings, and the myriad feelings you have at age 11, when the world is just coming into focus in a grown-up way. I ended up writing about a girl who felt all of those things in the shadow of her brother’s battle with neuroblastoma, an experience that touched every member of their family in very different ways.
People often remark on how authentic the family in my book feels, which is a compliment that all writers crave. I wrote them that way because I know these families. I’ve read their words. I’ve baked beside them. I’ve cried with them, too. I’ve sat there, shaking, unable to accept the reality of a diagnosis, a relapse, or the death of a child.
I owe a debt to those families who shared their experiences so freely, in the hopes that the knowledge would spread, and somehow things would change. So far, banding together has had a tremendous effect: Cookies for Kids’ Cancer alone has funded 80 childhood cancer research grants, leading to 32 promising new treatments and clinical trials available to children fighting cancer today. But there is still more work to do. And I am proud to be a part of that effort to spread awareness, reader by reader.
The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.