Children's Healthcare of AtlantaChildren's Hospital at Memorial University Medical Center
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My Story
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Autumn was first diagnosed with an Optic Pathway Glioma in October 2007 at just 14 months old. Her tumor starts at the back of her left eye and extends to the chiasm where the optic nerves cross. She underwent 60 weeks of chemotherapy. She had a lot of struggles along the way but is a fighter! She had 8 hospital stays, about 20 ER visits, so many clinic visits we'd lost count. She had so many Doctors we kept a journal just to remember all of them. My baby lost vision in her left eye. We were told her tumor was inoperable due to size and place. Autumn had two blood transfusions and lost her hair three times. During this time we also found out that she reacts to a few medications. Vancomycin gives her "Redman" and IV Benedryl is a "don't".
This sweet child had been through so much already and we were so grateful that it was over. We couldn't have been more wrong...
After almost five wonderful years of being stable, we found out her tumor was growing. She'd been complaining of headaches and eye pain. We jumped through hoops to get referrals and got the appointment that shook our happy life. She has to go through chemo again. She's 7.
How was I to tell a 7 year old that her tumor had grown and that she had to have chemo again to treat her cancer?
We talked about all of it. Port placement, chemo, feeling bad, getting better, missing school, needles, pokes, blood work, hair loss, weight loss, taking pills... even the possibility of shaving her head when her hair has mostly fallen out. We talked about hair bows and hats, we cried. Bawled actually. We cried together and then we dried our tears and did our hair. We needed that, to do our hair together, before all of this starts. She's thrilled that at five months into treatment she still has her hair.
I told her, I managed to tell her about everything. We even pulled out her binder from the last time. We looked at her "Beads of Courage", she has over 350 of them. One is her Purple Heart. She got it for completing chemo. This was all supposed to be over...
Unfortunately, for cancer kids, it's never really over.
The Childhood Cancer Ripple Effect
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