Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 2, 2001

Robert’s Update BMT + 45

If this were a book I might wait until it was published to read it and then I might read the beginning and then the end to see if it was worth reading.

Today was just the opposite of yesterday. Last nights nurse, Doreen, knew we were worried about the counts from yesterday so she drew them very early this morning. By the time Robert got up at 7:00 a.m. Doreen was walking in with the print out of Robert’s counts. The results are the following:

Robert’s numbers were great news; at least we were pretty sure they were. It was good to have Fred and Dr. Horn agree that these numbers were good. Dr. Horn had put Robert back on GCSF last night and she says you can see that kind of improvement after only one dose. Robert had been off it for 2 and a half days.

The most important thing is that Robert looked and I think felt great today. He ate well and had some new toys to play with. Uncle Dan came to visit and so did Kaitlynd from down the hall. Kaitlynd lost a leg over the last three-day weekend in a motorcycle accident. She is fourteen years old.

I wish we could judge Robert’s health by his loudness because he sure has been loud today. He also let his nurse, Jackie give him his largest medication in a syringe without being held down. We were so thrilled I had him pretend to do it again so I could get a picture.

Jackie said she has never seen a child eat as much through there bone marrow transplant. He is not at full appetite but he is doing well. It is also surprising that he has been able to avoid mouth sores and mucositis.

JoJo is still holding his own and Bailey is still in ICU. I heard he would be back now if we had enough nurses. We miss him around here, our little Superman.