So my heart is breaking right now. My daughter was diagnosed with AML leukemia at eighteen months old. She endured five rounds of chemotherapy treatments over five months, two inductions followed by three consolidations. Weeks after being discharged from her five and a half month hospital stay, she was diagnosed with chemotherapy induced cardiomyopathy. Two weeks before her third birthday she received the gift of life, a new heart. She did well through the first year following her heart transplant, recently her white blood count started to raise. It went from 13,000- 83,000 in about five months. As her white blood count started to raise, the transplant team watched her for rejection; the oncology team continued blood smears and flow cytommetry; and infectious disease checked her for every known pathogen. Last week she had a bone marrow biopsy, she was positive for the Philadelphia Chromosome. She has been diagnosed with CML. My heart, is broken. My daughter turned four years old in April. They are trying to get insurance to approve her for a medication (can't remember the name), but I know it is not Gleevac. The goal is to get her into remission in three months, or go straight to bone marrow transplant. She is obviously a very unique case, she is already taking a whole mess of anti rejection medications which she just recently stopped throwing up on a daily basis from. After going through treatment of AML, I have been told this will be a lot easier. After reading the boards, I feel like this may not be the case. AML was a grueling horrible battle, please someone tell me this will be more manageable.
Mother of MaryOlivia AML and CML warrior extraordinaire
Additionally, I have been told this is a totally new leukemia. It is not a relapse of AML or a manifestation of AML.