Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: September 21, 2001
Robert’s Update BMT + 64
I think writing can be a form of therapy. JoJo passed away around 5:30 p.m. today. He spent one day in the ICU and then they were moved back to 7Long but into a quieter more private room. Poor Ping had to move all their things twice and then this evening she was moving everything home.
I went up to see her just for a few minutes. Her husband and two friends were there. The friend told me when I was leaving that Ping seemed more peaceful today about JoJo and that JoJo even smiled at Ping today. Ping said her daughter knew but her older son did not yet and that they were going home to tell him after he returned from school this evening.
The whole ward seemed upset. Everyone was crying and many of the nurses came into give Ping a hug. I talked to one nurse and said to her what an awful job it is, to see children die but she reminded me about all the times they see children get better. It is true they see more go home in better shape than in worse shape.
I think the hardest part is to see the effort JoJo made to try to survive and the decisions Ping had to make. Even after JoJo passed away Ping allowed the medical staff to take small biopsies of JoJo’s major organs with the hope that the knowledge from this work will help some other child.
Robert continues to try to walk everywhere. We continuously worry about his falling and bruising himself. His platelets are still pretty low and he can’t afford to loose them by bruising himself. His hemoglobin rose .2 from Wednesday to Friday. We can hope this means he is trying to produce his own red blood. His medicines have increased on weekends with medications to reduce the chances of pneumonia.
Bailey is starting to move towards oral medicines with plans of leaving next week in the works. If anyone has an idea how his parents can get him to take his oral medication, please speak up. He gets so upset he can make himself very sick and then throw up his medicines. Any ideas from anyone?
