Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: August 27, 2001
Robert’s Update BMT + 39
Robert’s counts have risen again and he has not had a fever in five days. Dr. Horn is still very positive about his engraftment. Robert may be a little bit of a miracle considering Dr. Horn has never seen a child’s counts go so low and keep their engraftment. It is still not completely confirmed he still has his engraftment; blood was taken today to complete another study. We may have those results as early as Wednesday. Fred called and said today we should celebrate.
My happiness is tempered with sadness. Jo Jo is not doing well at all. His abdomen area continues to get full of blood and unprocessed urine. Today, they put a catheter in him in order to continue the draining and keep him comfortable. I can hear him crying and screaming. All I can do is pray, cry and hug his mother. When Dr. Horn came in this evening, I asked her to please tell me Jo Jo was not in pain and she said definitely he wasn’t, that it was the toxins from his liver getting to his brain.
I offered to stay with Ping tonight but her older son was there and she said she would be all right with him there. They will move Jo Jo to ICU in the morning but they are allowing Ping to keep the room next door to be able to rest there.
Bailey has been a little better today. He is at day + 10 and he has just passed the WBC of .2, the big magic number for parents. Bailey has had over 12 platelet and 4 blood transfusions.
I think Chatra may still go home tomorrow. She is a walking miracle, after thirteen years of leukemia she will be free of it when she goes home.
Many of you have asked what you can do and many of you are already praying for all these children. There is something else you can do, give blood, and give platelets whenever needed and register at the bone marrow bank. The most needed bone marrow donors are male between 18 and 35 years old and minorities. So if you are not in this category, please talk a friend into going with you as soon as you can. Jo Jo had to receive his transplant from cord blood that was only a four out of six match. Would things have been different if he had gotten a better match? I do not know but I think so.
Here is a helpful number and two websites:
1-800-givelife
www.redcross.org
www.asbmt.org
