Carson had a bold, charming confidence, an indomitable spirit, and a disarming smile that would warm a room. Most of the time during his 3+ year Carson vs. cancer battle, he had a smooth bald head that undeniably shouted cancer. He walked with courage, grace and dignity every step of his valiant battle. On January 12, 2010 he took his last breath and stepped into Paradise.
Carson was a freshman in high school when he came home and said he “felt weird.” Since weird is a little difficult to diagnose, we took note but weren’t worried — he was a 14-year old boy! Then he began to talk about a sore neck, kept getting sick every morning, so back and forth to the doctors, specialists and for 3 weeks, no one could figure out what was wrong.
Then THAT day, exactly 3 weeks from telling us he felt WEIRD he said, “I feel REALLY WEIRD, I think I’m seeing two of everything.” We called one of those specialists, who called ahead to the Children’s Hospital. We jumped in the car, threw on the flashers and didn’t slow down until we arrived at the Emergency Room, Carson was immediately triaged. Two hours and one scan later, the doctor invited us down the hall to that private room. I’ll never forget staring into her face, hearing words like brain tumor, brain cancer, neurosurgeon, oncologist, chemotherapy, radiation then we saw the scan of that GOLF BALL sized TUMOR; I fell to my knees and wept.
Along the way, Carson kept a journal of his fears, dreams and loss of dreams, and as he became weaker and weaker, he asked his English teacher to help him put his heart into words. When cancer was relentless and we’d searched the world for a cure that is yet to be discovered, Carson said “mom, promise that my journal gets published.” His thoughts are raw and true and honest, Carry Me was published 6 days before he died, it’s in the Library of Congress and we’ve sold over 50K copies.
At the VERY end, he whispered “mom, make sure they study those tumors in my brain, because if those tumors can help some kid someday not die from cancer like I am, I’d like that — it’s hard to have cancer.” We launched a Foundation that bears his name, and the cureMEdullo research initiative — proceeds from Carry Me go to “study those tumors.”