Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: August 26, 2001
Robert’s Update BMT + 38
Things looked pretty bleak yesterday morning. Robert’s WBC was .2, RBC was 2.5, Hemoglobin was 7.3, Platelets were 14 and Lymphs were .08. The only good news was that Robert had not had a fever in over 48 hours. The other good news was that Chatra, two doors down, is doing so well Dr. Horn talked about her going home Tuesday (our belief is Dr. Horn starts talking about home a little too soon). The other bad news is that Jo Jo is very sick.
Fred and I called Paul Murphy right away and got Dr. Peters beeper number in Minnesota and he called back right away from a pay phone at the state faire. It was so nice of him to respond so quickly. He and Fred discussed the procedure and medications. Minnesota does not use Zosyn in their protocol and Fred does not care for it either. Fred checked into the medication in the UCSF library and in one out of 300 cases it can cause effects a few weeks after it has been used. It can send the counts down. UCSF has been using it forever. Needless to say, Dr. Horn stopped Zosyn yesterday and started Cefepine in Robert’s IV.
Now, I am going to jump to the good news, the engraftment study of the bone marrow came back already and Robert’s bone marrow was engrafted 95% by the donor and his peripheral blood was 90% engrafted by the donor. This does not mean that Robert is still engrafted, Dr. Horn wants to take blood tomorrow morning to check again and we will not get that data for a few days. I think someone in the lab is taking special care of us because the data will be coming back much faster than in the past. As I understand it, analyzing engraftment requires enough lymphocytes to get a good reading. Hopefully, Robert will have more tomorrow. We were just hoping that someone’s blood would come back and his counts would come up. To think it still might be the donor’s and we wouldn’t have to put Robert through this again is almost too good to think about.
Another key point is how good he looks. He is watching Barney the whole time he is awake and drinking diet coke. He also has been eating some food, bacon and chicken nuggets. The nurses are all crazy about Robert. When they take his blood pressure in the night, he grabs one of their hands, holds it and rolls over on it. Sometimes he grabs their head and hugs it hard. Also, even though they have to give him terrible medicines he forgives them in about two minutes.
Things have just been too tough for Jo Jo. His mother, Ping was so excited Friday because his engraftment study showed him 100% engrafted. Jo Jo has leukemia and his father was diagnosed with colon cancer in January. Jo Jo is Chinese and there was big article in the Mercury about how difficult it is to find donors. He was given cord blood. Jo Jo’s abdomen has been filling up with fluids and blood. His liver is not working well and fluids were not getting to his kidneys. Jo Jo has been in a lot of pain and I could hear his crying in the night in pain. I think Ping misunderstood Dr. Horn and thought she said Jo Jo might not make it through the night. I don’t think Dr. Horn said that but that the situation is very serious. I think if it was that serious they would move Jo to the PICU and they didn’t. They decided to do a risky procedure on Jo Jo this afternoon. It sounded like an amniocenteses in that they drained the fluid out after finding the right spot through ultrasound. They took out more than a liter of fluid and Jo Jo is much more comfortable.
Please add Jo Jo, Chatra, and Bailey to your prayers for Robert.
