Date: Fri, 07 Apr 2000 16:02:39 -0400

Lesley (44 years old) was diagnosed with a left temporal brain tumor
(gbm) on August 11, 1999 while our family was in the middle of a 5 week
vacation.  Her big symptom was a debilitating headache followed by
increasing unresponsiveness over the period of a day and a half.  She
had a craniotomy on 24 August (75% removed), went through 2 weeks of
occupational and physical rehab in a rehab hospital, started her
radiation treatment on 8 September, and completed radiation on 19
October.  She tolerated radiation very well with only a bit of extra
fatigue starting about the 4th week.  The day after radiation treatments
ended, we had to take her to the emergency room with symptoms of
swelling.  She was admitted and treated with increased Decadron and
Mannitol to reduce the swelling.  She was discharged on October 26th and
readmitted to the hospital through the emergency room on October 30th
with renewed symptoms of swelling.  An urgent surgery to debulk was
performed on Halloween.  She was discharged on November 9th.  The 
morning of the 10th, fluid started coming out of her stitches and she 
was readmitted to the hospital through the emergency room and operated 
on for an infected bone flap.  The bone flap was removed and she was
discharged on November 15th.

She had been due to start Temodar a few weeks after her radiation was
completed, but due to all of the complications, she was not able to
start until December 9th.  The morning of December 24th, she fell twice
in the bathroom and was transported to her special room in the emergency
room (we have gold medallion status because of our frequent visits
:-)).  As she was about to be discharged, she had a couple of mild
seizures and low blood pressure so she was readmitted.  She was treated
with Mannitol and more Decadron (24 mg/day) and she was also treated for
an intestinal infection.  An MRI also showed a cyst had formed in her
head.  On December 30th she was discharged from the hospital.  On
January 4th her white blood counts were elevated and the doctor switched
her to a different medication for the intestinal infection.  Her Temodar
was postponed until January 11th when her blood counts were all fine.
Since then she has breezed through her Temodar rounds.

Lesley's primary deficit is aphasia (word finding difficulty) although
we generally can work through that to get good communication.  She had
also had mild to moderate headaches from August through mid January when
they seemed to just go away.  She also has significant vision loss in
her left eye and a swollen optic nerve in her right eye which is
improving through a combination of Diamox and Decadron.  She has
occasional eyeaches behind or above the left eye which are taken care of
with Tylenol.

Lesley has been kicked around quite a bit by all of this.  We have
decided that I should manage her care (I have the interest and the
motivation) while she goes about the business of living her life as
normally as possible.  We have 2 children (11 and 9) who we both love
dearly.  Although we understand the highly probable outcome of this
disease, we hope she can live as good a life as possible for as long as
possible.