It is hard to imagine the end when you are given a childhood cancer diagnosis. There is so much to process, learn, and wrap your head around. When we were given the 50+ page document that outlined the next 36 months of our son’s life, it seemed nearly impossible for us to think we would come out on the other side.
But we did! Our son, Bo, was diagnosed with Acute Lymphoblastic Leukemia on August 26, 2016. He completed his final chemotherapy treatment on November 3, 2019. We battled so many setbacks and valleys during that time. We watched our son gain 40 pounds from steroids, only to be on the verge of needing a feeding tube months later. He struggled to walk, complained daily of pain, and spent endless days in the hospital for simple things like the common cold. We fought through the worst and are now proud to say that he is a survivor of childhood cancer!
In a matter of days, I went from worrying about how and when to take the multiple chemotherapy drugs to researching and learning about the side effects of those drugs. I somehow had to comprehend the idea that what we just spent 3 and ½ years putting into Bo’s body to keep him alive will most likely cause him a lifetime of multiple chronic diseases. Approximately 80% of childhood cancer survivors develop one or more chronic health condition as a result of their treatment. They are at an increased risk for emotional problems (depression, anxiety), reproductive and sexual health problems, growth and developmental delays, learning and memory problems, digestive, heart and lung issues, and hearing and vision problems. And, above all, survivors are at a higher risk to develop a secondary cancer in their lifetime.
Little did I know that getting Bo through his treatment was just the beginning. It’s a little hard for his 6-year-old mind to understand what lies ahead. And, sure, right now we are relishing in the glory of what he has overcome and focusing on celebrating his health. But the time will come for us to face one or many of those late effects listed above. Bo may have ended his cancer battle in November, but his war is just starting.
What does it mean to be a survivor? I Googled the definition, and besides the obvious, I also found “a person who copes well with difficulties in their life”. I think it’s safe to say that Bo, and so many other kids, couldn’t define a survivor any better than that.
–Courtney Miles, MACC Fund Emerging Leaders Board