When most people think back to being 5 years old, they probably don’t remember putting on a brave face for their parents. Most people don’t have to confront the fear of having your hat knocked off in your teens to expose your bald head. Most don’t think about having to respond to your friends and classmates who ask if you’re contagious. Most people are lucky enough not to know what it’s like to have childhood cancer.
However, for those who have survived childhood cancer, there is also the misconception that going into remission is the end of the journey. That a few check-ups throughout your life will ensure your health along the way. That surviving is enough.
Unfortunately, though, surviving is not enough. In fact, a recent study found that by the time they’re 50 years old, 96 percent of survivors of childhood cancers will have a serious health issue caused by the treatment that saved their life. I see every day the effects of survival from childhood cancer in my research at Valley Children’s Healthcare Childhood Cancer Survivorship Program.
Supported with funding from the St. Baldrick’s Foundation, I work with not only childhood cancer survivors in identifying health issues they may have as a side effect of their treatment, but also developing a larger network of support for survivors to help address their specific needs. In fact, a lot of survivors don’t have any knowledge of the side effects their treatment may cause. Focused on defeating the disease itself, it’s often hard for kids and their families to begin to think about what’s next.
And I can relate. I not only see the effects of survivorship through the program at Valley Children’s Healthcare, but I have seen it in my own life. At 5, I was diagnosed with acute lymphoblastic leukemia, and faced the disease twice more before I got my driver’s license. I know what it’s like to walk back into high school and feel more comfortable talking to adults than my peers.
I’d like to say that it was this experience that lead me into pediatric oncology/hematology, but it’s not that simple. I spent so much time trying to fit in as a childhood cancer survivor that I felt I didn’t know myself because I was emulating others. It wasn’t until I was through medical school and started in this area of work that it really clicked for me. I could help other kids like me who were being brave for their parents or whose friends thought they were contagious. I wanted those kids to see a life for themselves beyond treatment.
I bring my experience to work with me, and it helps shape how I see my patients, but survivorship isn’t the only thing that shapes me or them. We celebrate survivorship, but there is still so much more to be done to support it. Advocates for their children can make sure they know the treatments their child received and the potential side effects. Things like post-traumatic stress disorder (PTSD), cognitive deficits, and infertility impact the lives of childhood survivors when they’re no longer children. I am dedicated to helping survivors navigate these issues and help to arm them with an understanding of the potentially serious health risks they may face, so they can be proactive about living their best lives.
To help childhood cancer survivors as they grow up, we need to make sure we’re working together to support his or her survivorship. Teachers who know they are instructing a childhood cancer patient should look for any cognitive issues that can be addressed. Perhaps untimed tests or tutors can help close any learning gaps that time away from school or effects of treatment open up. Parents and survivors can ask their treatment teams for possible side effects of treatment and be aware when they have health issues further down the road, and create a long-term follow up care plan.
Lastly, everyone can help support survivors of childhood cancer by backing organizations like St. Baldrick’s, which supports programs like mine that help treat not only childhood cancer but its effects. I encourage you to make a donation to St. Baldrick’s in honor of a child or adult survivor.
Childhood cancer treatments saved my life. And inspired me to help save others.