20mo. Daughter with MDS
Hello my name is Stacey and we just found out a week ago that our daughter has MDS. We took her in for her 18month check up and brought up to her pediatrician that she had these red spots on her back and belly that were not going away, so she recommended a blood test to check her platelet counts. Well they came back a little low but nothing dangerous so he referred us to a hematologist and Phoenix Children's Hospital. We did more tests and decided to just keep an eye on it thinking it was ITP and she would just recover on her own. Well when we went in for the 3rd time and her numbers dropped along with her neutrophils the Dr. decided it was time to do the bone marrow aspiration and biopsy. At first all the results came back normal and the doc said to come back in 2-3 weeks and we would do more blood tests then and she would call back when all of the final results came in. Then we got the call that Dr. Hingorani wanted us to come in the next morning to go over all the results and I knew something was not right but didn't think it would be this severe. So needless to say we went in the next morning and got the horrific news. So here we are now preparing for the battle of our lives and going to let anything stand in our way!!!
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This one is for all the caregivers on the forums! please come join us here even if you are not a caregiver you are welcome! I know at times all I do is sit and cry and feel that no one understands. WE ARE NOT ALONE!
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