When Clarissa was 13 she entered Johns Hopkins Hospital to be treated for relapsed acute leukemia knowing full well that she had only a 40% chance of survival. Today she is 16 and in excellent health. But it took 2 1/2 years of incredibly rigorous treatments to get there. Equally importantly it meant riding an emotional roller coaster for her and her parents.
Clarissa had been treated for leukemia when she was 2 and had been fine for a decade when the relapse occurred.
She found there was not much available to read about coping with the emotional issues that come with a cancer diagnosis during the teenage years nor was there a support group of teens who had faced the same challenges. Consider that a teen wants to be more and more independent but that is just impossible when you now need your parents even more than ever and must depend on doctors and nurses for life itself. Teens are focused on their appearance but what if you have no hair and an intravenous catheter sticking out from your skin – pretty hard to hide.
Friends want to be friends but don’t know whether to visit or not and when they do they find you wearing a mask to protect against infection and must shun the instinct to hug. These and other issues surfaced over her 2 1/2 years in which she spent much of the time in the hospital and lost well over a year of school, again much of that to avoid contact with infection while her immune system was at its lowest. With the help of at home tutoring, she kept up with her assignments and now is back in school with her classmates, getting good grades and enjoying the life of a high school student while thinking about college and the future.
Clarissa persevered and now wants to help other teens who develop cancer to cope with what lies ahead. She has started a blog, gives frequent talks and plans to write a book on coping later this year.
A friend of mine, a twenty five year survivor of adult leukemia, told me after reading her first blog entry: “Wow! I am sitting at my desk with tears in my eyes – she is so beautiful – inside and out. So brave – so inspiring. I am coming up on 25 years and have no courage compared to this young woman.”
If you know a teenager with cancer, I encourage you to direct them to Clarissa’s blog.
Stephen C. Schimpff is a retired CEO of the University of Maryland Medical Center in Baltimore and is the author of The Future of Medicine — Megatrends in Healthcare. He blogs at Medical Megatrends and the Future of Medicine.
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