This column really hit home for me since my daughter is a pediatric brain tumor survivor and she graduates from high school this June. What happens next has been on my mind a lot lately. The treatment plan changed right before Evie was diagnosed in 1996, so her radiation dose was less than it had been but still the equivalent of over 500,000 chest x-rays. It could have been much worse, but she didn???t avoid late effects. The chemo damaged her hearing and kidney function. The radiation damaged her pituitary gland, her thyroid, and her bones. After years of daily growth hormone shots, she???s reached her adult height of a little over 5 feet tall and at age 17 is given the children???s menu in every restaurant she eats at. She takes several medications daily because of damage caused by the treatment that saved her life. She also suffers from migraines, probably due to the shunt implanted in her brain. Since headaches were the main symptom of the original tumor, she fears reoccurrence even after ten years off-treatment. Thankfully, the migraines have decreased after her recent jaw surgery for under-developed jaw ??? also from the radiation damage. She has some cognitive issues too, but she plans to go to college and become a teacher. She???s at higher risk for other ongoing health problems such as secondary cancers and fertility issues. My biggest hope for her is that she is one tough cookie! I think having three brothers has also made her a little ornery and tougher. She is self-motivated and mature beyond her years. She???s worked harder and has more determination than your average high school senior.
Let???s not forget that even though survival rates have improved, cancer is still the leading cause of death by disease for children in the U.S. We lost several of our cancer buddies during treatment. A local family we know lost two sons. Over 12,500 kids are diagnosed with childhood cancer every year and incidence rates increased from 1975 through 2002. Improving survival rates is very important, but it isn???t good enough, researchers must improve survivability and find better ways to defeat cancer so that survivors don???t suffer as much long term damage. We must continue to support research. Sadly, in the last few years, government funding for research has been cut. .
My daughter sees an endocrinologist and neurologist regularly; but she hasn???t seen her oncologist in years. We don???t have a late effects clinic near us. I read about possible long term effects and worry that since Evelyn isn???t followed by an oncologist we may miss something that should checked. Another concern is insurance coverage for Evie when she???s too old to be covered by us or when we???re not around. It???s not just finding jobs that childhood cancer survivors will have to deal with but finding - and keeping - health insurance and doctors that understand their special health issues. We all face obstacles, but they???re just a little bigger for su









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