Comments from survivors about late effects
"At the age of nine, I was diagnosed with Turcot’s syndrome, an extremely rare genetic disorder combining medulloblastoma and familial adenomatous polyposis (FAP)…. Over the years I learned to deal with many of my obstacles from having brain cancer, FAP, chemotherapy and radiation treatments. I have severe hearing loss and wear hearing aids to maintain my hearing … I have ataxia and have difficulty keeping my balance and walking long distances. I needed leg braces to help me get around the school. I have trouble taking notes in class, so I had an aide at school to help me…. I also have cataracts and will eventually need to have them removed…. This past summer I had my colon removed to reduce my chances of colon cancer…. In spite of all my physical health challenges, however, the most difficult challenge I continue to face is dealing with the learning disabilities caused by the surgery and radiation effect on my brain…. Even with all these hardships and activities going on in my life, I am still able to try new things, have friends, keep up in school and live my life to its potential." Steven, 17
"I was 13 when I was diagnosed and pretty active in sports, playing lacrosse, soccer and riding my bike and scooter. Right after my first surgery, I had to learn to do everything over again, even how to eat. The left side of my body is weaker and I have double vision as a side effect from surgery. I have left-sided facial paralysis, so I can’t move the left side of my face…. As a result of all these side effects, I have never been able to play lacrosse again, nor any of the other sports I once played. It is hard to balance on my bike and scooter because of my double vision. Also, because I wear a patch, I have no depth perception…. Through my 16 surgeries, I have remained positive thanks to family support and my therapist. I’ve had my share of bumps in the road, but I always seem to take back control and veer back onto the road of life." Gary, 17
