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My 27 yr old daughters MDS and SCT JOURNEY
Hi Marrow ,
I thought each day, week , month I would try to type a little something about my daughters journey with her MDS and SCT .
She finished her 4th cycle of Vidaza and her counts have gone rock bottom already . Platelets they dropped to 32 the first week after Vidaza was done, but they are always the first numbers to come back up.
She is still needing mag. and blood once or twice a week .
Testing that will need to be done before SCT for BMT Doctor and Insurance company .
We got permission from the insurance company to do outpatient SCT and we will staying at a apartment near the hospital . We will have to go to the hospital everyday . For fluids , Blood ect.
August 29, 2014
BMB
August 29, 2014
MRI was done to make sure that her Toxoplasmosis was gone from her brain. Praise God the report is back and everything looks good !
Sept. 10 Dentist X-rays and mild teeth cleaning
Sept 11 and 12 ,2014
EKG, chest x-ray , Muga scan PET , Pulmonary function test , Rad/onc consult , Psych / social appoinment , Talking with transplant codrdinator , financial Liaison , social worker , Busulfan test dose , consent conference / pharmacy , line placment / removal . WHEW!!!!
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Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
Last edited by amyangel : Thu Sep 25, 2014 at 11:52 PM.
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