Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: November 16, 2001
Robert’s Update BMT + 117
Robert came home last night and was just thrilled. In fact, he stayed up until 12:30 a.m. because he was so excited. He has been running ever since. The other kids were excited but also a little disappointed. They could have their friends over while Robert was in the hospital. We tried to fit in as many as we could and they were each about to start a second round.
Robert’s engraftment study came back and the results were very positive. His T cells went from 100% his cells to 15% donor cells. This is a very good sign. Stem cells in the bone marrow were 80% donor, red blood cells and monocytes were over 70% donor. Dr. Horn and Dr. Cowan told Mark this means they wouldn’t try to give him more of his donor’s marrow. If they had to give him more of his donor’s marrow, they would have had to admit him again and give him chemo again, but probably a stronger amount. This does not mean that his transplant is stable; he is still considered a chimera and he still could convert back to his own marrow . Dr. Horn said there are some good things that come out of this slow conversion, he is less likely to develop GVHD (Graph vs. Host disease).
His white blood counts have been a little higher the last three CBC tests, 2.3, 2.5 and 2.5. This could be because the infection in his line has been eliminated. Dr. Horn said the original line probably would have had to be taken out if it hadn’t fallen out. So Robert has a new, nice, clean, shorter line.
The ten days were tough in the hospital this time because Mark and I had so much going on. Mark has inherited a new group at Applied Materials and I had 12 meetings about the Silicon Valley Children’s Hospital during three days of Robert’s stay. If my brother Dan and my mom weren’t always there for us I don’t know how we would get through this. The kids have school, soccer, piano, therapy, Marie’s clothes shopping, friends birthday presents, school projects and other things I can’t and don’t want to remember. Also, Robert was tougher at the hospital, he was more mobile and wanted out of the room all the time. He also eats pretty well in the hospital and he had the worst case of diarrhea (lots of poopy diapers). I know my brother (my brother, Dan) really loves me when he changes all those poopy diapers while at the hospital.
Robert also has the full complement of the enzyme he needed from the donor. This is really what matters. He does seem to be hearing better, talking and communicating more. His favorite line is, “Hey, what you doin?” So my devout sister, Nancy said it was her praying that made the difference and I am sure she was right but just as an extra insurance policy, can you each continue to keep up the prayers?
I constantly think about Robert’s donor and what a selfless altruistic thing he did. In my whole life I am not sure I will ever be able to do something as noble as this individual did for my family. We now can write him but we can not put last names. If anyone wants to e-mail me something to put with our letter, I will add it to our envelope. Please remember, we can’t put last names yet.
