Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: July 22, 2002

BMT + 113

We had a wonderful day last Friday. Jenny Smith and her aunt and uncle, Liz and Roy had dinner with us and they were able to spend the night on their way to San Francisco. We got some great pictures of Jenny and Robert (not so good of Mark and I).

We also were able to talk to Bob Heinis Jr. and you all have to guess who Bob is (just kidding). Bob was Robert’s donor the first and the second time. He told me that donors are usually not allowed to know anything about the recipient and how excited he was to receive our first letter. Bob was at a small dinner in New Jersey to honor donors when his coordinator brought my first letter to the table. He said two of the other donors were almost as excited as him because their recipients didn’t survive and they wanted to read about Robert. Bob said he carries a picture of Robert in his wallet and when he has a bad day he pulls it out to remind him of how much Robert has gone through.

Bob has one son out of college, two in college and has been a police officer for 26 or 27 years. He said he and his wife, Cathy are planning to start doing some traveling (should I tell him how many people he will have to visit in California or do you think that might convince them to go to Florida instead). I couldn’t talk long because Robert’s IV was alarming me to come turn it off. Yes, Robert will finish his first week on the IV tomorrow and then start two more weeks after that.

I don’t want to get whiney here but I asked Robert (my brother, Robert vs. little Robert and vs Bob, the donor) to print another copy of his and Michelle’s new script that Robert will direct and I think this weekend I am the only person visiting LA that left that smoggy city without a copy. So who in the family is going to cough up a copy to me and if I don’t get a copy soon I may just shorten my e-mail distribution list (how is that for whining?)

Counts