Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 13, 2002

BMT + 72

We haven’t gotten results on the biopsy yet but Dr. Menzer this morning told me he was switching Robert from cyclosporin to neural. Cyclosporin is an IV immuno supressant and neural is an oral immuno suppressant. Robert has to be on neural three days before they can check his levels and make sure he is getting the correct dosage. They cannot send Robert home until they complete that study.

Aunt Jo told me her friend Becky saw the pictures of Robert and Matt and said the dark line on his forehead was just the shadow of his halo (if Becky could see him batting his balloon with a flashlight, she might have second thoughts).

Robert’s GGT was up about 100 points today. This helps to justify the biopsy yesterday. With it bouncing around, we really need to know what is going on with his liver. Also, it is nice to have Robert’s platelet level so high and not have had any bleeding from the biopsy. He received three packages of platelets and my hope is he will be able to go a few weeks without another platelet transfusion.

Counts