Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: March 24, 2002
Well, it sure looks like Robert will be going back into the BMT ward tomorrow and he will start radiation on Tuesday; 1200 centigrade (they used to call them rads) spread over 6 times. His lungs, brain, and eyes will partially shielded during these events. He will have some medication so that he will sleep through the 6 visits, two each day.
Dr. Cowen’s team decided to request the same donor because the other five donors match our donor perfectly but each donor is a five out of six match with Robert. If Robert has built up antibodies to his donor, he will have built up the same antibodies to all of the other five donors.
Last time, they gave Robert 3 x 10 to eight donor blood and this time they plan to give 5x 10 to the eighth; about as much as they are willing to give. They will probably densify the donor’s marrow so that the amount of blood Robert receives may not be quite so much. Mark commented that after the first BMT there was a concern at the time we received back Robert’s first engraftment study back that Robert did not show any donor Tcells; that they were all his. In February, Robert showed about 29% donor Tcells but now he is at 13%.
Dr. Cowen doesn’t like to conjecture what went wrong.
Robert will receive the TBI regimen, the tried and true one. He will receive cylophosphemite (cyloxin), full body radiation, and ATG (from Horse).
Robert went to see Lisa yesterday so that she could cut his hair as short as possible. I took lots of pictures before and after. When Lisa came to the back of Robert’s head, I just couldn’t let her take the last two curls. So Robert has a quarter inch of hair all over his head, except in the lower back of his head where there are two curls remaining.
It has been very nice to have my mother-in-law here for the last few days. The kids love to have Grandma Jody here. Life feels more normal to them and they love to spend the time with G’ma Jody.
