Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 7, 2002

BMT + 66

Robert’s eyes are looking less yellow. He looks quite striking with his dark tan and his baseball hat from Doctor Cowan. He stood on the scale all by himself (that is Robert not Dr. Cowan who stood on the scale), I believe for the first time in 5 weeks. Robert also sat in his chair for an hour and then took the three small steps (with assistance) over to the bed to get back in.

Everyone says how great he looks, that they can hear him down the hall and that they come in to see to get cheered up.

The major concern right now is that his GGT has continued to rise and rise drastically. It has doubled in the last eight days and risen 1000 points in the last three days while bilirubin has continued to drift down slowly. After talking to Fred and Dr. Mentzer, the concern is whether this is GVHD related, drug reaction or a viral infection. The treatment would be different dependent on the problem. If it is not GVHD but they treat for GVHD, this can cause mortality. If it is now chronic GVHD and they are not treating it that could also cause death. Fred feels that the chance of death from the biopsy is a lot lower than the chance of death from mistreatment of his liver problems. Dr. Mentzer has requested a G.I. consult to try to rule out any drug reactions. It is likely that Robert wouldn’t get the biopsy until early next week because they need to get enough washed platelets to keep his platelet level over 50K.

Congratulations to our Cousin Stacey. She had a little girl this morning, Jordan Lynn. And congratulations Uncle Dan, for getting straight A’s all this semester.

Counts