Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 12, 2002

BMT + 71

Robert had his biopsy at about 10:00 a.m. this morning, just before I received a copy of his counts. With his GGT dropping 300 points and his bilirubin going down 15%, I wonder if it just took time to get everything going in the right direction.

We should receive the results of the biopsy tomorrow or Friday. The doctors are still concerned about Robert’s eating more. I think Mark and I are more concerned about his gagging. Mark’s father, Fred, thinks the gagging can be due to the problems in Robert’s liver.

Uncle Dan, Matt and Nick came to visit today and it was like one big noisy playroom in here for awhile. While they were here we tried to catch up on Robert’s eating since he was not allowed to eat in the morning.

Helen Crouch, the marrow donor coordinator stopped by this afternoon to have me fill out the paperwork to allow them to release all the information to Robert’s donor as soon as the year is up. The year will be up as of the day of Robert’s first bone marrow transplant; July 19th. Helen also said the National Donor Registry Organization has their yearly conference in October and that they have one donor and one recipient present at the conference. They are considering Robert and his donor. Isn’t that cool? The other cool thing is that Cara and Jennifer are working tonight.

We have met a few other families here recently. Kian, next door is starting his bone marrow transplant; he has Hurlers which is similar to Robert’s syndrome. Catherine had her bone marrow transplant yesterday. Her donor was her newborn brother’s cord blood. Her mother, Chi is with her full time having just given birth four weeks ago and she unfortunately has the room without a bed. Ryan is in our old room; he is seventeen and pretty bored. I lent him our copy of Verticle Limit to watch.

Counts