Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: June 8, 2002
BMT + 67
I was pretty embarrassed yesterday; I requested a consult from dermatology to look at the black line across Robert’s forehead. It was getting wider and went all away around his front hairline. Mark had told me that Dr. Cowan had told him it was a radiation burn that stopped at his hairline. He said face skin is much more sensitive and that his hair had protected part of his face. Uncle Dan was here when dermatology came by and he had a list of my question to ask dermatology. When the dermatology doctor came in he turned on all the lights and proved it was Robert’s new very dark hairline. Needless to say, Dan did not have any reason to ask any other questions. When I returned I asked the nurse was he an attending dermatologist or the fellow (serving a fellowship here) and the nurse said she was pretty sure it was the doctor because he was very cocky. So, either it was the attending or they start teaching cockiness in the fellowship program or future doctors are just born cocky. It would be interesting to do a study on the level of cockiness coming into a medical program and leaving it (too much like whether the chicken or the egg came first).
When Dr. Cowan came to visit yesterday, I told him about the hairline and he was insulted to hear that the comment that it might be a radiation burn was attributed to him. He said all kinds of unlikely comments get blamed on him.
Robert’s GGT was down 300 points today. The G.I. doctor came by this morning. I missed him because I was down getting Robert bananas out of the cafeteria. He told Dr. Mentzer that they sometimes see very high GGT’s with liver transplants and it just works out over time. He was not anxious to do a liver biopsy. He would really like to see Robert’s platelet count much higher.
I think the GGT level in the next two days will help them make a decision. If it continues to go down, we could be on our way “H” (I am afraid to use the whole word). If it does not come down, I think we really will have to do a biopsy to know what to treat.
Uncle Dan is spending tomorrow with Robert. You may each get an encore of his last e-mail. He may not be invited back if Robert’s GGT goes way up again during his visit (good e-mail or not). Uncle Dan may not get a chance to write an e-mail, Robert is into Power Rangers again and Dan may just have to watch them with Robert all day.
Aunt Michelle, your toy yesterday did get Robert out of bed pushing it around for a few steps and it got me out of bed this morning when Robert started yelling “Winnie the Pooh” and “I want Winnie the Pooh now”.
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