Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: June 14, 2002
BMT + 73
Kathleen says feedback was positive when I took credit for Robert’s improvement. She tells me the pressure is on to write something clever.
Something I learned a few years back: When the pressure is on and you are stuck for an idea, rely on the wisdom of Homer Simpson:
Marge: We don’t think you’re slow. But on the other hand, it’s not like you go to museums or read books or anything.
Homer: Do you think I don’t want to? It’s those TV networks Marge. They won’t let me. One quality show after another, each one more brilliant than the last. If they only stumbled once — just gave us thirty minutes to ourselves. But they won’t, they won’t let me live!
I should include news.
All came back super from the liver biopsy. Word is no GvH and no VOD.
Still not much appetite, but he does eat some when his brother Matthew visits, like he did this morning. IMHO, it makes more sense for Robert to be encouraged at home, rather than constantly bringing Matthew up here to get him to eat.
Home is looking like a real possibility soon. The only hang up now is for Mark and Kathleen to knock out a few walls to make room for all of Robert’s new toys.
Matthew and Robert turn six next Thursday. While I’m sure all his friends at UCSF would give him a nice birthday party in his room, it would be nice if the festivities happened at home.
While hanging in the hospital your brain goes in a number of directions. If any of you are thinking of getting into the research game, I’ve got a couple ideas worthy of the big government grant bucks: The herd mentality of elevators and the effect of 16+ hours of non-stop Scooby Doo.
The Comedy Network is preparing for the upcoming Scooby Doo movie, but Robert has allowed a break or two: I get to check on Tiger Woods at the U.S. Open every now and then; and Robert will allow the channel changed for his fav movie: Deer Hunter.
Since I’m relying on other’s cleverness, rather than my own, might as well include the words of the late, great Shel Silverstein:
If anyone met us, they’d surely agree
We’re proper as any two people can be.
We’re clean-cut, well-mannered,
Well-dressed and polite…
But, oh, if they’d see us at night
When we’re drinkin’ and druggin’ and watchin’ TV…
Eatin’ cold pizza and drinkin’ ice tea.
Just you and me and the nurses makes three…
Drinkin’ and druggin’ and watchin’ TV.
Actually only one of us is well-dressed and the other is clean-cut. It’s up to y’all to guess which is which.
Numbers, we now got numbers (my sister typed them in for me to ensure I send them.)
Uncle Dan
Counts
