Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 21, 2001

Robert’s Update BMT + 33

A BMT is very similar to a roller coaster ride, many ups and downs. Today was a down hill ride towards more high temperatures. The cultures are not showing anything so the doctors have to treat a potential fungus or infection with all kinds of different antibiotics. If we cannot pinpoint what the infection is Robert will be treated with a course of antibiotics which means he will be here for another 14 days. It could also be graft vs. host disease or a central line infection. Only time may tell or may not tell if he just gets over it. He has been sleeping a lot more than normal. An infection eats up a lot of his rising counts, platelets; white blood cells are down almost in half, red blood cells, etc.

Even infection does not stop him from watching Barney.

Mark’s group at Applied Materials had all donated new toys, over 100 toys to Child Life at UCSF. A representative came to see Robert yesterday to see if he had enough toys to play with. She offered to bring him some brand new toys to play with. I bet they are the toys donated by the Applied Materials folks. Isn’t that pretty neat? Or as Marie would say, isn’t that pretty cool?