Subject: Lesley Update - 5/2
Date: Tue, 02 May 2000 22:24:19 -0400

It's been a while since we checked in.

Things are going very well with Lesley.  We went to Orlando from the
17th through the 24th (couple of pictures on the web site) and Lesley
did super.  She had no trouble at all with airports, airplanes, rental
cars...  Our only little scare came on the 18th when we were at Typhoon
Lagoon at Walt Disney World.  It was quite hot and sunny and Lesley was
wearing long sleeves and long pants (per doctor's orders) along with a
good sunscreen on her exposed skin.  We were using a black umbrella to
shade her from the sun, but I think we didn't do a good job of keeping
her cool enough, hydrated, and fed.  She seemed to get somewhat unsteady
in the mid afternoon but recovered well enough to walk out of the park
under her own power.  The next day we got her a nice floppy straw hat to
wear the rest of the trip and we had no problems thereafter.  We got
wheelchairs that I pushed at each of the parks except at Universal
Islands of Adventure where we got her a motorized chair.  The motorized
chair didn't work out too well between Lesley's inexperience with it,
the big crowds, and Lesley not wanting to risk bumping into anyone.
Lesley avoided violent rides but we did go on Splash Mountain and
Countdown to Extinction  (no Space Mountain or Hulk roller coaster!).
We didn't push ourselves too much (except for the wheelchair :-)),
leaving every park by 6:30 at night.  We stayed off-Disney at a hotel
with a small kitchen in the room.  That worked out well as it is often
more of a strain on all of us to go out and it was very crowded
everywhere.  We only ate out 1-1/2 nights.  (The kids eating takeout
McDonald's counts as 1/2.)  The trip was a good opportunity for the
family to get away from the routine and gave the kids a chance to blow
some carbon out of their cylinders.  We hadn't been away since last
summer.

While on our trip, Lesley's Decadron dosage was at 16 mg/day (tapered
down from 24 mg/day).  We had set a schedule up that would have had her
at 12 mg/day, but we decided that going from 16 to 12 the day before
departure would not be wise.  Instead we waited until the 25th.  So, she
is now on 12 and doing pretty well.  The aphasia is still there, but if
it has gotten worse, it's only by a smidgen.  While on the trip, Lesley
did have more eye aches than she had been and was taking Tylenol twice a
day.  Since then she's had a couple of eye aches but not too bad.  There
have been no headaches like there had been back in November-December.
That continues to be excellent news.  She's also quite active in the
kids' lives and around the house.  Last weekend she went to their 2
soccer games, and tonight she watched Chris play baseball while I
watched Kim play softball.

We meet with the neuro-oncologist on Thursday the 4th.  Hopefully the
blood counts and everything will be a go for Round 6 of the chemo.  Her
Day 21 blood counts were "excellent" according to the nurse.  We'll also
discuss whether to lower her Decadron even more.  My only concern is
whether it will increase the problems with her eye; I think it's worth a
try.

Lesley is much the same as she was last month - and that's 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, completed 5th round of Temodar 4/9/00
mailto:dbaldauf@alumni.brown.edu
web page: http://www.davebaldauf.com