Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: December 17, 2001
Robert’s Update BMT + 151
Robert’s favorite line these days is, “What you doin?” and “What?”. He seems to be communicating better and running more. He doesn’t seem to run into walls as much and he seems to save himself a little better when he falls.
Whenever we get his counts, I feel it is time to give an update. As you probably can tell we are not drawing blood as often as we used to. Dr. Cowen felt the information is not that helpful right now and I would let my moods be totally swayed by Robert’s counts. There also seem to be no relationship between his counts and his physical health. He seemed a little more tired when his counts were really low but otherwise there seemed no way to tell in advance what they might be. Also, the medical staff has told us that the blood counts run in a three-day cycle, the first day low, next day higher and the third day will be the highest. Today, his white blood count was 2.8 (not too low but not very high either) and his platelets were 101,000.
The last marrow biopsy result was that the cell line Dr. Cowan is interested in came back still slightly above 80% donor. Dr. Cowan and his staff do have a plan of action, if the donor count falls below 50%, Robert would be re-admitted and go through chemotherapy again and receive a bone marrow transplant again but with the same donor. They are concerned that they might not have transplanted enough the first time. At that time they were very concerned about his lungs.
After this last biopsy, Dr. Cowan told me if he had the results when he was deciding to put another central line in he probably would not have. Without a central line, they could start taking blood only once a month when they do the IVIG. They would have had to poke Robert each month but it is so much safer than a central line. Dr. Cowan says they have lots of ways to help Robert fight a virus or infection but no good way to protect him from infection in his line.
Things are settling down some. The kids all miss having their friends over for play dates or sleep overs but they have found ways to get invited to their friends houses often. Their friends’ mothers are bearing the brunt of the socializing effort this year.
My work on the Silicon Valley Children’s Hospital has been very time consuming but rewarding lately. Our hospital plans are going great and we are still on schedule (early schedule) for opening the doors June 2003.
We plan to have a wonderful Christmas. We are tapering the dose of Robert’s chemo medicine. This is always a good sign. Robert’s hair is almost covering the huge scar on his skull. He has light brown hair now, long side burns and his hair runs from his forehead down to the top of his rear end.
I tried to see Ping a few weeks ago. Brian, Paris’ father, and I went to see Ping become a citizen. Unfortunately it was so crowded, Brian and I never saw Ping there. Her husband is still in China trying alternative medication to fight his cancer.
I hope you each feel as fortunate as we do this Christmas. It is the time of year to count ones blessings. We count ours everyday we look at our five wonderful children.
