Guest Blogger: Emily’s mom, Tammy

Tammy shares the overwhelming experience of explaining her daughter's complex medical history for something as simple as her school's medical forms.

   My daughter Emily started 6th grade today. As with the start of any school year, I had a stack of forms to fill out. Name. Address. Emergency contacts. The one I dread the most… her medical history.
    “Has your child ever been treated for any of the following?” I see asthma, diabetes, cystic fibrosis, seizures and other conditions, but never cancer. Yet, childhood cancer is the number one disease killer of children.
    So, I have to check “Other” and write in… Anaplastic Medulloblastoma.
    Next question… “Describe any other important health-related information about your child” Oh boy. Where do I begin? Emily had a brain tumor when she was eight. She was in treatment for more than a year. She had surgery to remove the tumor from her cerebellum; radiation and chemotherapy for six and a half weeks; another round of maintenance which meant high dose chemo in the hospital several times a month. I want to describe the grace and bravery she showed with every test, needle prick and scan.
    There are not enough lines on this form for me to write all that cancer put her through.
    I have to figure out how to list the long-term effects that are around every corner. She has issues with hearing. She wears glasses due to her cataracts. She processes information slower than before. I make sure her 504 plan is up to date, but I don’t want her to feel different from everyone else.
    I learned that 13,500 children are diagnosed with cancer in the US. That’s enough to fill one classroom of 6th graders every day. A startling fact to consider as school starts. I serve on Connor’s Heroes programs committee because I want to help the parents who are struggling with their child’s cancer diagnosis. When I first met Lisa in clinic, it was a great comfort to me to know that she had been through her own son’s treatment. Now I use my experience as a “cancer mom” to create programs that will benefit (and not burden) a family when they register with Connor’s Heroes.    
    Emily has been (knock on wood) cancer free for two and half years. We are halfway to her being considered a cancer SURVIVOR! She has to have five consecutive years of clean scans to say that she “officially” survived cancer. But, does anyone really survivor cancer? I feel it is constantly with us. Like another member of our family. Maybe that’s why, when she finally got the dog she always wanted, she named it Nelson. After VCU’s Nelson Clinic where she was treated.

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