Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: August 20, 2001
Robert’s Update BMT + 32
Everyone that reads this must celebrate! In this process there are so many ups and downs that we must really enjoy the good news. Robert’s engraftment study came back today and his donor has engrafted into his body by over 90%. I don’t think that means that it is a sure thing that he will stay engrafted, I think I was afraid to ask that question but I think it is a very good sign and a lot better than not being engrafted. I had reminded Dr. Cowan at 12:15 p.m. that it was Monday afternoon and I was expecting the results back. He laughed and said there was still a lot of time left in the afternoon. He told me that if the news was good he might let one of the nurse coordinators come tell me. I said if I heard from him I would know it was bad news.
Mom arrived around 2:30 p.m. and I went to lunch about an hour later. Around 4:45 I called mom to see if she had heard from Dr. Cowan and she said he had just called looking for me. I felt this was not a good sign. I decided to head back to the hospital because my cell phone doesn’t always work outside the hospital. When I got back to the hospital it was about 5:20 and I thought maybe it wasn’t bad news but that Dr. Cowan was going to tell me because no one else was around. When I got back to the floor the charge nurse paged Dr. Cowan and he when he called back he told me right away it was good news. You can’t imagine the relief and joy that went through me. I wanted to kiss and hug everyone I saw. I called Mark, told mom and walked to the grocery store 13 blocks away to get Robert some marshmallows to celebrate with. Robert loved the marshmallows. He had been asking for them for two days, ever since he started watching Barney at a camp out roasting marshmallows.
There is some bad news, Robert still has a fever and it has been going on for about 30 hours, with Tylenol lowering it every five hours. Robert slept a lot today, I believe because the fever is bothering him. I would guess that we would not be going home until Friday or later.
Mark came up tonight and I headed home. I stayed for Robert’s dressing change. Unfortunately, Robert inherited the Stark sensitive skin and a dressing change over his central line is very hard on him. It takes two of us to hold him down while another does the taking off of the tape and cleaning the area. Under the taped area he looks like he has been burned. I have been told by Parris’ mom that his skin will toughen up. I just hope it happens soon. The great thing about Robert is he forgives you about 30 seconds after its over and gives each of his parents a big bear hug.
The nursed and resident doctors were all so happy to hear about the results of Robert’s engraftment studies. These professionals at UCSF are so impressive it is hard to describe how hard working, loving and thoughtful they are. Please tell the next doctor or nurse you see how much you appreciate them.
