Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: March 27, 2002

BMT -5

Robert went through two more rounds of radiation today. Because of his size and his inability to stay still enough on his own, an anesthesiologist has to be present to administer something to put him to sleep during the procedure and he is then laid on the floor with the beam set up focused down on him. They shield his lungs, eyes and brain during the radiation.

Robert seems to be handling the radiation fairly well. He is always hungry when we return to the room. Tonight, he had a huge piece of pizza, apple pie, and two and a half bags of MnM’s. Dr. Lee thought it was great how well Robert is doing. He said when the kids are sick it ends about the same time and all we can hope is that his feeling sick might occur later rather than now.

Robert’s counts were very low; his white blood count was .6, platelets=22K and Neutrophils were 350. Isolation has just become critical again.

Grandma Jody is still helping us out. The kids are thrilled and are vying to see who can be spoiled the most.

Uncle Dan came up during the middle of the day so that I could go for a run and each lunch out of the hospital. It was a beautiful day; people sunbathing in the park. I ate outside and got a little sunburned.

And Cousin Donna came by to visit for a few minutes. A pretty good day overall.

Any time I want to feel sorry for myself, I can just look down the hallway and see pictures of other children on this ward. There are twin girls, almost a year old, each going through their second BMT. One parent is in each room. The twins have SKIDS and did not engraft the first time around.