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August 21, 1999

 
From: "Smith, Dianne" <Dianne.Smith@mpls.frb.org>

While we were in the hospital, Jenny received antibiotics for fungal,
viral and bacterial infections. They do this immediately, because it would take
too long to identify what kind of infection is causing the elevated
temperature. This way all of the bases are covered quickly.

Jenny became very remote, just stared blankly at the wall and wouldn't
speak. It was very scary. We had her room filled with doctors and
students from the Neurology department. When they left, the room was
quickly filled with doctors and students from the Infectious Diseases
department. Many tests were done, including an EEG (which was normal), an
MRI (which was normal - there is a small cyst on the lower portion of
Jenny's cerebellum, but it was there 2 years ago on an MRI and hasn't
changed in appearance so it is not considered a problem). And, lastly, a
spinal tap was done. They did the spinal tap right in Jenny's hospital
room with local anesthesia; they took 6 vials with 2 cc's of spinal
fluid in each. These vials were then sent to various laboratories around
the country to test for a number of infections. To date, 4 of the labs
have indicated that the results were negative. This is a blessing. We could
tell by the serious nature of the conversations we were having with the
doctors, that any one of these conditions would be a major problem.

Finally, on Thursday, August 12, the CMV test came back negative. Jenny
was becoming more alert and she was more responsive. She was anxious to go
back home and we agreed that we could take care of her from that point on.

With all of the tests that were done, everything came back negative and we
couldn't be happier -- our bottom line is to have Jenny healthy and happy.


Jenny is more quiet and tired than she'd been before the toxicity. When
we're not in clinic getting blood, platelets or meds; Jenny just naps or
watches the "Backstreet Boys". Her counts are extremely low as a result
of the gancyclovir; her white blood cells are at 1600 (they were at 4800).
We have been giving her the GCSF (cell stimulating factor) for a week with the
hope that it will jumpstart her WBC count.

Yesterday she had a reaction to the platelets she was receiving, shaking
and chills. The nurses sent a sample of Jenny's blood and the remainder
of the bag of platelets to the lab at the U of Mn to determine the cause of
this reaction. We haven't heard the results of that.

As we were leaving the infusion room, Jenny tripped on an I.V. pole and
twiste her left ankle. So instead of leaving, I took her down to x-ray to have
he ankle x-rayed. Nothing was broken, just muscles/tendons stretched. So we
were given the go-ahead to leave with a wheelchair. When we got outside,
my car had a parking ticket on it (and an order to tow it!). Can you
imagine?...we just had to laugh! We got out of there in a hurry.

Overall, progress is extremely slow....but, each day is another day closer
to a complete recovery. Jenny's 281.3 mannosidase enzyme level keeps us
encouraged and determined to have a successful bone marrow transplant.

Please continue to keep us in your prayers and thoughts.

Love,
Steve, Dianne, Jenny and Jason

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