Wednesday, October 11, 2023

Opinion Today: For children with cancer, what does “survival” mean?

Considering the lasting effects of both the disease and its treatment.
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By Pamela Paul

Opinion Columnist

It took me 13 years to write this article.

Back in 2010, when I was a freelance writer, a raft of studies showed a number of distressing long-term side effects of surviving childhood cancer. Often, survival itself is framed as an unalloyed success story: You made it! Everything must be fine now. But these kids grew up only to experience higher rates of depression, anxiety and infertility.

I'd written an article for the Times Magazine about women who get cancer while pregnant, but I hadn't given much thought to pediatric cancer. The medical circumstances in each case are quite different, but they pose similar heart-rending questions about what it means to experience the joy of new life and the threat of death simultaneously. What does it mean to "survive" cancer when you're 3 years old and cancer survival is measured at five years? What are the effects of both the cancer and the treatment on a developing body and mind?

Next I spoke to a survivor in his thirties. He made me realize how profound and enduring the experience can be. I hadn't considered the possibility of survivor guilt, for example. "Why did I live and everyone else on my ward died?" he asked, breaking down in tears. I found myself fighting off tears as well.

A few weeks later, I joined the Times Book Review as an editor and couldn't find the time I would need to fully dedicate to the article. Reluctantly, I tucked my research into a file folder. But I never forgot the story. I kept an eye out to see if anyone else wrote about some of these issues that still tugged at me. I wanted to know what we might learn from this cohort of early pediatric cancer patients. Now that many cancers are detectable at earlier stages, more adults become long-term survivors, too.

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Twelve years passed. My father died of cancer. Friends got cancer. Then last fall, two chance encounters revived those questions in my mind. First, I met an oncologist at the Dana-Farber Cancer Institute and ended up telling him about my unwritten article. "This is a huge area of interest right now," he said. "We're trying to figure out when best to pull back on treatment to minimize the side effects." Pediatric cancer survivors are helping doctors figure that out.

The second encounter was in a book, John Gunther's gutting memoir, "Death Be Not Proud," about his son, Johnny, who died in 1947 and just missed the advent of modern chemotherapy. Like many readers, I wept as I read the final chapters. That's when I knew I had to return to this article.

The result, "It Takes a Lifetime to Survive Childhood Cancer," focuses on Marissa Gonzalez, just one of the dozen survivors I spoke to while reporting. But I hope her life story will shine a light on the challenges and resilience of an entire generation. There are so many stories like hers that have yet to be told.

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