Sunday, September 14, 2014

Rhabdo is personal


       When I was twelve, my world changed.  I was thrown into the world of childhood cancer because my younger brother, Nolan, was diagnosed with Alveolar Rhabdomyosarcoma, an aggressive soft tissue tumor, which was lodged in his sinus cavity.

     The treatment for Rhabdo included nearly a year of three week chemo cycles of VAC - vincristine, dactinomycin, and cyclophosphamid, removal surgery, and four weeks of proton radiation therapy.  We met other families, other kids, who were getting rhabdo treatment at the same time, who had been diagnosed before or about the same time.  My brother is the only one left.  Rhabdo is a killer, with a 60% 5 year survival under good conditions.  Relapses and metastases are common, and many of those who made it to the five year mark died afterwards, more relapses, more metastases, more complications.

      For a long time, even the mention of my brother's cancer made me cry.  I was twelve, and the only experience I'd had with childhood cancer was hearing about my teacher's daughter dying of leukemia complications the year before.  But over the years, the tears gave way to a racing heart and sweaty palms to the ability to talk about my brother's disease without flinching.  Now when I speak up about childhood cancer it's only because I'm not a huge fan of speaking to people in general.  I know that childhood cancer is what I want to study, what I want to work on, what I want to work to end.  This is why I'm here, to help end childhood cancer.

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