Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 10, 2002

BMT + 69

Tomorrow will mark 10 weeks at UCSF for Robert (this time). He seems ready to go home. Today he tried to get out of bed all by himself. The key issues to his going home are whether he is eating enough and whether his GGT number is a real problem or not.

Robert ate a banana for breakfast, half a turkey sandwich for lunch, and one quarter of a big messy plate of spagetti for dinner.

His GGT went up about 70 points today but down 300 yesterday. I think we are in a wait and see mode about the kidney biopsy. If his GGT continues to go down and/or his bilirubin they will not do a biopsy. I reminded Dr. Menzer this morning that Robert has a birthday in 10 days (I didn’t think it would hurt to bring it up).

Robert has now gone eight days without needing platelets. This is a really good sign that he is making his own.

Counts