Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: March 18, 2002

Robert’s Bone Marrow Transplant + almost eight months

Friday, Helen Couch called. She is the woman at U.C.S.F who does the donor search. She told me Robert’s donor would be giving marrow again on April 1st and that Robert would need to be admitted on March 25th. You may be having the same reaction I am having; March 25th is only a week away. I have the added reaction of thinking about all the organizing that goes along with one week until hospital time commences. There are many tests Robert must go through before he enters the hospital: EKG, ENT, Pulmonology function tests, and a visit to his dentist. As you can imagine, I am busy setting these appointments up.

Mark talked to Dr. Cowan last week and Dr. Cowan told Mark that when we see him tomorrow he would explain why Robert now is going in a week before the BMT rather than two days before that Dr. Cowan originally had planned. Dr. Cowan is planning to do full body radiation to make more space for the donor’s stem cells. I am glad that Dr. Cowan forewarned Mark Friday because a scheduler called from the radiology department today and quite imperiously told me to have Robert in their department to talk to the Department Chair at 9:30 a.m. Thursday. I objected to his high handedness until I found out that his office was told at noon today to squeeze Robert into their schedule this week. I then decided I better thank the scheduler for all his hard work. It does mean Robert and I will be going to U.C.S.F three times this week. The good news for the kids and I is that Grandma Jody will be here to help take care of all of us.