Subject: Lesley Update - 12/4

I was hoping for a routine and we don't have one yet, although we're
closer.  Highlights of the past 2 weeks - stitches removed, IV drugs
completed, blood work done, MRI taken, met with neuro oncologist and
neruo surgeon, my parents left, we'll probably start chemo next Tuesday
or Wednesday.  Film at 11:00.

Overall, Lesley is doing a bit better.  She definitely has more strength
and is not taking naps every day.  The headaches remain, although they
vary in intensity and location.  They do not seem to occur as often and
they are not usually as intense.  The aphasia is a little worse.  She
has been out of the house on several occasions - Dr.'s appointment on
Tuesday, MRI on Friday morning followed by lunch at the 99 Restaurant, a
trip to Woburn to drop off Nana and Pop-pop today followed by the
Holiday Fair at the kid's school.  While home she is still into cleaning
up and getting the kids on the ball with their homework and reading.

On the 22nd, Lesley had her stitches removed by the resident at the
hospital.  They had healed up nicely, and he saw no problem.  Hurray!
We could start washing Lesley's hair!  We pointed out some swelling in
the the middle of her indentation (the area where the bone flap was
removed), but he did not seem concerned about it.  On the 24th, the
visiting nurse who visits us once a week to change Lesley's dressing on
the PICC line was concerned about the swelling and called the
neurosurgeon's office.  She didn't get a response from him until the
following day at 11:30 at night!  He said to keep an eye on it over the
weekend and to contact him if there was any additional swelling.  Well,
there was no additional swelling, so that was good.

On the 31st, at 6:00 AM, I gave Lesley her last IV.  Yea, more sleep!
We went to the neuro oncologist's at 9:00.  While there, we ran in to
the neuro surgeon (him: "Oof!" us: "Sorry!" :-)).  He looked at her head
and said, "You know what that swelling is?"  We said, "No, but we sure
as hell hope you're not asking us because you don't know!"   He replied,
"That's your brain!"  He seemed OK with that, so we were OK with that.
I mean, would you know whether that's a good thing or not?  :-)  If
you're brave, take a look at:
http://www.geocities.com/davebaldauf/swell.html

He seemed pleased with what he saw and asked whether we were there to
start up chemo.  We said that we thought we had to finish the oral
antibiotics as well as the IV.  He said he'd talk to the oncologist.
When we next saw the surgeon, he was zipping by our examining room and
shot us a quick thumbs up.  Now what the heck did that mean?  In Italy I
would know, but not in this context.  When we met with the neuro
oncologist he said that we could start the chemo without completing the
oral antibiotics.  We should continue the oral antibiotics and wait a
few days to see whether there was any infection flare up as a result of
coming off the IV antibiotics.  We were to get a complete blood count
done, and a new MRI since it had been several weeks since the last one.
We would meet with him on the 6th, and if all was as expected, we could
start chemo on the 7th or 8th (it might be the 8th because it might take
the pharmacy a day to get the Temozolomide).  Also on the 6th, we will
have Lesley's PICC removed at the hospital.  It requires a trained
person to remove it, although I volunteered to just yank that sucker
out.  After all, if I can administer IV medication and pills, what else
is there to know?  So, we had the blood work done right after the
appointment at MGH.  Yesterday we went to the Charlestown Imaging Center
(a branch of MGH) and had the MRI done.  And Monday we go to the
doctor's.

Since Lesley has pretty much stabilized, and Nana and Pop-pop were
somewhat homesick, we all agreed that we would have them fly home as
long as they came back for Christmas.  So, we found some
not-so-unreasonable fares on the net (thanks, Continental!) on
Wednesday, and took them to the Logan Express bus this morning at
11:00.  They have been SO helpful to us for the month they were here.
But I think it unfair to ask anyone to disrupt their lives so much for
so long once Lesley was home.  We are trying to reach Lesley's father to
see whether he can come and visit for a spell.  I am still staying at
home full time and will continue until after we get through a round of
chemotherapy.

The children are handling all this pretty well, but there is some stress
showing.  I've tried to talk with them and encourage them to share their
feelings with me, but Lesley and I (and others) now believe we need some
assistance.  One of our friends, Paul Buckley, has a sister who is a
nurse in our Pediatrician's office.  She put us in touch with another
nurse in the office who has contacted a counselor who will provide
counseling for the children.  We hope to start that next week.

So, as you can see, there's not much to report. :-)  Once we start the
chemotherapy, we'll give you an update on that.  Here's the web site
again for the Temozolomide (Temodar):
http://www.virtualtrials.com/noteworth.cfm

We're hanging in there!

Dave&Lesley

--
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,
probably starting Temodar 12/99
mailto:dbaldauf@ultranet.com