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Caring for AJ Barr
5/26/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your prayers, support and words of hope and encouragement during this time when it matters most.
AJ was diagnosed with AML, an aggressive form of leukemia on May 22, 2016. He was admitted to Stamford Hospital for the first part of his treatment called Induction. Initial treatment involved 7days of continuous aggressive chemotherapy followed by a 21 day rebuilding period. He was hospitalized for 30 days. Several bone marrow biopsies indicated that the induction was successful and AJ was in remission.
However, AML does not stay away without further treatment. So AJ was hospitalized again to begin the next phase of treatment called Consolidation on July 21. This round was much more difficult and resulted in cerebellar toxicity, a condition that caused neurological symptoms such as ataxia, balance and visual difficulties. It was also discovered that AJ has a rare autoimmune anemia in which his body destroys red blood cells. It was feared that low blood counts put too much stress on his heart. This and other considerations prompted a search for an unrelated donor for a bone marrow stem cell transplant .
The Transplant Team at Memorial Sloan Kettering described AJ's donor pool as " an embarrassment of riches". He had 5 complete matches and the team was able to make the best choice for AJ. His transplant was October 5. MSK calls that date AJ's second birthday because it is the beginning of a new life. The transplant is considered his best hope for survival.
During the treatment, AJ received countless blood and platelet transfusions giving us a renewed appreciation for all who donate blood. We are also eternally grateful to our generous donor. We hope to thank him in person in the future.
It was determined in November that the transplant was a success and AJ was cancer free with 100 % donor bone marrow. This was not the end. There is a long recovery period, 12-18 months from transplant date. Due to his weakened immune system, AJ stayed out of crowded places and took several precautions to remain infection free. Despite all our efforts, AJ suffered a severe allergic reaction, several staph infections and spent 10 days in the hospital with pneumonia. At the end of April, after a 3 month struggle, AJ's medical team decided that he needed help getting his immune system started. Once again his generous donor provided bone marrow stem cells for a second transplant called a Boost. We hope AJ will be ready in October to receive all the childhood vaccinations he lost in the treatment.
Hopefully, our posts will be less and less as we continue on this journey.. We look forward to the day when AJ will have a complete recovery and our Motto: A Cure Is Within Reach will become A Cure Has Been Reached.