Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 29, 2001

Robert’s Update BMT + 72

Robert is doing pretty well. We are waiting on the last engraftment data; Dr. Cowan said the blood results were similar to the last four tests and the T-cells were more of the donors. We didn’t get to talk to Dr. Cowan personally to get more information, hopefully Monday we will hear more.

I went to JoJo’s gravesite services yesterday and so did Paris’ parents, Brenda and Brian. I added what Brian wrote because he said it better than I could. Ping asked me to please thank my family and friends for all the nice cards she had received. She was surprised I had a brother named Robert and a son named Robert (until I told her I named them both).

The grave site was beautiful, one of the prettiest spots I have ever seen. It had a view out to the bay and it was a beautiful day. I think everyone was holding up fairly well until Ping started crying. Then Ping’s older son, Jack started crying. Then her daughter, Melinda started and Jonathon, Ping’s husband started crying also.

I could see that the whole family had a very strong faith in God. I don’t know how they could get through JoJo’s death without and the hope of seeing him again.

Unfortunately, Bailey’s parents, Ron and Kelly could not make it. Their was a plan that Bailey was to leave the hospital Friday. Now it looks like it could be Monday.

Here are Brian’s words:

Before today, in my 47 years, I had attended only one grave site service. Today was my second, as I witnessed 5 year old Joseph laid to rest. It’s an experience I hope not to repeat. Nothing you do can prepare yourself to watch a family say good-bye to a son and brother. Kids are supposed bury their parents, not pass before them. In the last few weeks I have become rather close to Joseph’s family. The bond that develops with families in the BMT process is unlike any other I have known. Thankfully few families in this world face a possibly fatal illness with their child, but we do. And it’s that common thread that unites the families. I can’t for a minute suggest that I know how Joseph’s family felt today, but for me the loss was very personal. One of our “Family” lost the battle and it hurts.