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10/11/2016 Latest post:
Sarah has been diagnosed with a rare and serious disease called Aplastic Anemia, which means Bone Marrow Failure and will need a Bone Marrow Transplant. Her journey started in mid July when she started having symptoms of nose bleeds and bad bruising . On August 1 our doctor ordered a complete blood work test to be done, on the morning of August 2 (her 25th birthday) she was called and told to get to the emergency room immeditately that her blood levels were very low. She was admitted to the hospital and given transfusions of blood and platelets. A hematologist (Dr. Tang) took over her care. He believed a severe case of vitamin B-12 deficiency was what was causing the low levels. She was put on a regiment of B-12 shots and weekly blood work. After a few weeks her B-12 levels returned to normal but her blood cell counts continued to drop. She had transfusions 2 more times, and Dr. Tang then was supecting that it could possibly be Aplastic Anemia. He did a bone marrow biopsy and aspiration on September 8 and on September 23 we were given the news that she did indeed have Severe Aplastic Anemia (SAA). He referred her to John Hopkins. She was seen at John Hopkins on October 4 and we were told that she would need to have a bone marrow transplant. The family has been tested to see if we are a match for her. She will have another bone marrow biopsy done at the end of October to see if her marrow has started to correct itself. There is a 5% chance of that happening. If it happens then they would hold off on the transplant and monitor her to see if her levels continue to raise. At this time she is transfusion dependent and receives transfusions every 4 weeks. The medical team at John Hopkins is hoping that the process of the procedure can be started the first to second week of November. She will have chemotherapy prior to the transplant. After the transplant she will have to remain in the Baltimore area for 2-3 mos, as she has to be within an hour (including traffic) of the hospital for daily tests and treatments. And will need a 24/7 caregiver, who will be me her Mom.