Subject: Lesley Update - 6/30 Date: Fri, 30 Jun 2000 11:24:44 -0400 From: David Baldauf It's been a while, but there's nothing major to report. Lesley's condition is about the same as it has been for the past 2 months. She is on Day 3 of her 8th round of chemo. We had a neuro ophthalmology appointment on June 26th. The doctor was pleased. Lesley's vision has actually improved a bit in both eyes. He said that the regimen of Decadron and Diamox has kept the pressure off of her optic nerves. As he said several months ago, he's had patients go years without any further deterioration. The news was good as Lesley has been worried that her eyes were getting worse. Her left eye continues to be the source of her biggest complaint. She often doesn't quite know what to do with it - wear a patch over it, put a bandaid-type patch over it to keep it closed, or just go without anything. She continues to get eye aches that are controlled with extra strength Tylenol. Most days she takes just one round of the Tylenol - some days she takes two, some days none. The good news is she still doesn't get headaches anywhere else. On the 27th we had our monthly appointment with the neuro oncologist. He noted no change in Lesley's condition except for perhaps a smidgen worsening of the aphasia and some redness in her face (due to being outside a bit too much). I asked about the possible benefit of reducing her 12 mg/day dosage of the steroids since she's been so good. He confessed that they don't know whether decreasing the dosage even further results in reduced long-term side affects. So, until he sees the results of next month's MRI, he recommended we stay the course. He said she's been tolerating the steroids quite well. Lesley's Day 21 and Day 26 blood counts were fine, so he gave the go-ahead for Round 8 of the Temodar. On the home front, I took a 1 week vacation at the New Jersey shore with a group of my high school friends. About 12 of us rented a beachfront house to celebrate the new millennium and our 50th birthdays. It was a great time, almost magical. If you've seen the movie, "The Big Chill," it wasn't like that. My sister flew in to be with the family while I was away. It was not a good week to be gone as the kids played 4 soccer tournament games, the family went to Water Country, and Chris's baseball team won its baseball playoff game. But, everything worked out. Lesley went to all 4 of the soccer games and to Water Country. Thus, a little too much sun in spite of sunscreen, big straw hat, and long sleeves and long pants. Plans for July include our annual 4th of July party at Uncle Bill's in Pennsylvania (postponed to July 22nd to better dovetail with Lesley's chemo), and hopefully, visits to Dorney Park and Six Flags New England and Great Adventure (NJ). We'd like to spend about a week in NJ/PA but we'll see how it goes. Stability is good! Dave -- Dave Baldauf, h/o Lesley, gbm, dx/srg 8/99, rad 9/99, rad completed 10/99, debulk srg 10/99, bone flap removal srg due to infection 11/99, started Temodar 12/99, started 8th round of Temodar 6/28/00 mailto:dbaldauf@alumni.brown.edu web site: http://www.davebaldauf.com