Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: March 25, 2002

We checked in today and got Robert settled. They fortunately had gotten a box of new videos donated to the hospital and one of the videos was a Wiggle Wiggle Video he hadn’t seen.

Unfortunately for Mark and I there were not any rooms available with a bed. I don’t know how a children’s hospital gets a license with rooms without beds for the parents. They are going to try to move us when one comes available.

We had to do a dressing change today because Robert can not have on a bio-patch when he receives his radiation. It was pretty sad to have to put him through a dressing change when we had just changed it the night before.

Mark stayed in the hospital tonight and Robert seemed pretty happy until I left. He then told us he wanted to go home.

I was reading an article this weekend in the San Jose Business Journal about the power of prayer. They did a study with heart patients after open heart surgery. They had a prayer group pray for certain patients without letting the patients know who was being prayed for. The patients who were being prayed for actually came out of the surgery better than the group that was not receiving prayers. So keep up all the praying (maybe double it for the next three weeks, just for good measure).

I want to start adding Robert’s counts to the e-mail so that we keep a record here. His platelets are very low and Dr. Lee said it is because his own bone marrow is failing. This takes the choice of doing a second BMT right out of our hands.

Pre BMT Meds Regimen