Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 24, 2001

Robert’s Update BMT + 36

Robert started the day with his bone marrow biopsy. I was concerned about anesthesia because it went so poorly afterward last time. This time went much better. The Anesthesiologist was Dr. Brett, I believe. She was there for Robert’s first line placement and I liked her then and I liked her today. In fact, she told me that after her last surgery with Robert she was very upset that we couldn’t find his Will Smith Burger King toy. It somehow was lost in surgery. That night she went home and looked through her children’s toys to see if they had one she could give Robert. She did not find one so I told her Robert’s story about his favorite toy. I will save that story for another time.

Dr. Brett was able to just use a mask to put Robert to sleep. She did not have to touch his lines at all, which I was very happy about. It was a very short procedure. Dr. Horn was able to take a little marrow from the top of his pelvis bone. It took about 15 minutes.

We then went back to the room and Robert slept in my lap until Mark arrived with his father, Dr. Fred Stark. Did I happen to mention how nice it is to have a doctor in the family?

Unfortunately, Dr. Cowan was very busy today. He was leaving at 2:00 a.m. to fly to Asia for some conferences he is speaking at. Dr. Horn and he were not able to come and talk until 5:00 p.m. Dr. Horn was able to take a first look at Robert’s marrow and she saw normal maturation of the red blood cells, white blood cells and platelets. She could not tell whose blood it is, Robert’s or the donor’s, but they are having someone work over the weekend in order to hopefully know on Monday or Tuesday.

The good news is that Robert has not had a fever in about 36 hours. He looks alert (or as alert as anyone can look when they are watching Barney). Actually, I should not knock Barney. I love how Robert says Barney with a big accent on the Barn part of the name. And today he giggled when Barney hit a pinata with a bat. We need to thank Parris’ little brother, Henry for lending Robert his videos. Robert ate some food today, drank a lot of coke and slept well during his nap.

The bad news is that his counts continued to drop. His white blood count is down to .5. It has remained at .5 for about 14 hours so that is somewhat hopeful. For those of you scientists in the crowd I will try to attach a chart of Robert’s count and a graph Mark made from the data.

Matthew insisted he go see his twin yesterday. I am glad I took him because Robert’s ANC dropped below 500 today and it is not clear when Matt will see Robert again. He told his grandmother he was glad he saw Robert and that Robert was being taken good care of. Robert hugged Matt a lot while Matt was in his room.

I think we feel a little more hopeful after hearing the initial results from the biopsy. We can just pray that Robert’s counts are higher tomorrow.