Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: November 10, 2002

BMT + 7 months and 7 days

I was planning to write this last week on Thursday but our power went out from 6:00 p.m.- 2:00 a.m. and then this weekend I went for a women’s weekend away and was too busy with spa treatments.

We were worried that Robert might have Graft vs. Host and Mark and I went for an appointment with Dr. Horn on Friday to discuss it. His skin has been very dry and scaly since he had the CAT scan two months ago. We thought he might have had an allergic reaction to the die they used but he has had this problem with his skin an awful long time to be called an allergic reaction. He also has not been putting on more than a tenth of a kilo each week even though he has been eating much better (I have never spent so much time in Burger King, Jack in the Box, and McDonald’s drive through lines in my life).

They did a biopsy on his skin a week ago last Wednesday but the results are not back yet.

Mark, Dr. Horn, and I are fairly convinced that it is not GvH because he is so active, he is eating, and he is talking constantly.

Robert had surgery about two and half weeks ago to have a front baby tooth pulled, a cavity filled, and a tooth capped. The dentist came out right away and recommended the rest of his front teeth be pulled; they were open all the way through the root. Robert came out of surgery without his four front teeth and every tooth capped but the four small bottom teeth.

Robert is acting like a new three year old in the house. He is trying all kinds of new words. One of his first complete sentences he learned from Matt, “I wan that”. The other day he handed his teacher an orange crayon and asked her to color a pumpkin.

And no, he is not potty trained yet.

I talked to Bob Heinis, Robert’s donor on Election Day and he told me he retired from the police force as a captain. Kathy, his wife, is keeping him very busy with projects around the house and in March, he and two of his sons are going to hike the Appalachian Trail. It is 2000 miles long and it will take five months. Bob and Kathy are planning to come out in February and we are very excited at the prospect of showing them off.

The other great news is that the head of nursing on the seventh floor of UCSF, Laura ordered a new black leather-sleeping chair for JoJo’s old room. Mark and I donated the money for it. When I talked to Laura last she said she was able to use money from another account to buy a total of eight new chairs. I don’t know if anyone can appreciate this who has not slept in a broken chair in a hospital room. I am so pleased Laura is going to be able to make a difference in eight rooms.

And last but not least the good news, I won the election and am now a Saratoga City Council Member. The bad news is there is a lot of reading that goes along with it.

I am including this picture of Robert with all the “man’s” each of you found for Robert. The kids in the Head Start Program in Sonora sent a few, two cousins found some more, and Brian found one in the treatment center toy box.