Daniel's Story
June 6th, D-Day. National Doughnut Day, Daniel's Diagnosis Day. The day our world shattered into pieces so tiny that they created a dust so thick we could not see through it. Our funny, brilliant, football loving son Daniel who has been struggling with uncertain physical pain since the fall was surprisingly diagnosed with an extremely rare form of leukemia. He struggled on and off with a series of injuries and multiple recurrences that left him with residual pain pain and a peculiar diagnosis that little of us knew about called CRMO, yet physical therapy, a cumbersome brace and multiple medications never seemed to get Daniel back to his normal self. He was just not getting better through continued treatment and we just knew something was not right. After pursuing further medical advice, he was given a full body MRI at the end of May. Although we were looking for answers on June 6th when the phone rang we never would have expected the one that came saying they wanted to see us for a follow-up blood test. Daniel's bone marrow looked dark, a sign he was losing his white blood cells from the marrow. Within the hour we were back at Children's Hospital for that blood test and by the end of the day the results were confirmed and they were sure our boy had Leukemia. But the roller coaster was just beginning. At first they comforted us by letting us know that Daniel had something called Acute Promyelytic Leukemia (APML) a very curable type of blood cancer that would be a long road but was fairly common with a high success rate of a full recovery. This quickly changed from best case scenario to our world spiraling out of control. We always knew Daniel was special but never as special as this. It turns out APML typically has a translocation of genes 17 and 15, but not for Daniel. Daniel somehow has a very unique and almost unheard of variant translocation of genes 11 and 17 and is found in less than only a handful of adults in the entire world. There is almost no known regimented treatments for Variant RARA alpha translocation fusion 11-17, this subtype of APML. So Daniel will now be somewhat of a pioneer I guess in the area of treatment for this type of leukemia and you will all join us on our roller coaster ride as we hit many highs and lows along the way but hopefully come out on top with this unicorn child healthy and cancer free by the end of his freshman year of high school. He truly is one of a kind.
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