Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: October 20, 2001

Robert’s Update BMT + 90

I am becoming concerned about Robert’s counts. We draw blood twice a week and his white blood count has not gone above 2.2 since he has been home. In fact, the only time his white count has been above 2.2 since the bone marrow transplant was when he was on GCSF which is a stimulant that increases the counts. Even before the bone marrow transplant back in April of 2000 Robert’s white blood count was not high. It was 5.2 when the normal range is 4.5-15.5. His platelets were 140k versus the normal range is 140-450k. I wonder if this is normal for the syndrome.

I think Doctor Cowan is also becoming slightly concerned. He would like to talk about another bone biopsy soon to see what is actually happen in the marrow. There is a chance they would give Robert more bone marrow from his donor (they have the extra marrow store right now). With the other bone marrow transplant children with this syndrome was this also the case, that it took a long time for the white blood counts to raise again?

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