At 17 months, Ryan was always our ‘healthy horse’, as we liked to call him. He rarely got sick and was the picture of health until one day in November 2008.
He spiked a fever and was in severe pain. His fever was 104 degrees and Tylenol wasn’t working. We took him to our local Urgent Care and they put him on antibiotics for an ear infection. The ear infection went away, but the fever did not. He had a blood test taken and we were blindsided by the results. It was leukemia.
That night we were admitted into UCLA’s pediatric hospital. The wonderful doctors at UCLA told us that Ryan had the most common form of leukemia, Acute Lymphoblastic Leukemia (ALL), and the odds were really great for a full recovery. They just had one more test to take, but not to worry because the odds of that being positive were extremely rare. When Ryan’s tests came back positive for Philadelphia Chromosome ALL, we were devastated. We were told that it was a very rare, very aggressive form of leukemia. Only 3% of all ALL leukemia patients are tested positive for it. The outlook did not look good.
Then the miracles started coming. The first one came after the PH+ diagnosis. UCLA had just approved the request to join a study group of the medication Dasatinib, which was a new drug that directly targeted the PH Chromosome. Ryan went on to become the first patient in the US to go on the worldwide study. His results were amazing. He went from an initial 90% leukemia to less than .01% in his marrow. Then the second miracle happened.
Since Ryan had a leukemia that was notorious for relapse, Ryan was recommended for a bone marrow transplant. Late one evening, we received a call from our physician at UCLA. Ryan’s twin sister, Lauren was letter for letter, number for number, a perfect match all of the way down the line. We celebrated by hugging her and kissing her and crying on her, thanking her for her special gift.
Ryan received his sisters bone marrow on March 18th, 2009 and we celebrated his five-year post-transplant anniversary in March of 2014. Today Ryan is currently enjoying elementary school, riding b