Myelodysplasia Support Group

The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified within the hematological neoplasms.

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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!!!

Replies

birdmom232
birdmom232

Stacey,

I am so very sorry to hear this about your baby daughter. MDS in young people is fairly rare, Most people are over 60 when diagnosed.

Did they give you a category? MDS is an umbrella for many variations of the disease.

You sound like a fighter. My thoughts & prayers are with you, & please keep us posted. I post on "New Member," which is a discussion I started a couple years ago. Sharon
deleted_user
deleted_user

Thank you Sharon! Yes hers is due to monosomy 7, she is lacking half of chromosome 7.
deleted_user
deleted_user

Stacy, so sorry to hear about your daughter. It seems you have good doctors with a lot of follow through. You and your family are in my thoughts and prayers. Becky Jean
deleted_user
deleted_user

Thank you!