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November 20, 2000

Jenny continues to work so hard!

From: "Smith, Dianne" < dianne.smith@mpls.frb.org >
Date: Mon, 20 Nov 2000 16:47:41 -0600

This past few weeks have been so incredible. 

Jenny continues to exceed the doctor's expectations. This time it is her
vision. Since August 4, we have been treating the CMV virus, which has been
in her retinas, with IV gancyclovir or foscarnet. We have even seen another
Retinologist for a second opinion. Three weeks ago he felt that Jenny's
right eye was permanently damaged, the CMV had gotten into the middle eye
and the meds weren't clearing it up. His hope was that we could save the
vision in her left eye, which was 20/80, and it would have to do the work
for both eyes. We were quite disappointed. 

When he saw Jenny last Tuesday, on November 14, he was shocked that Jenny's
right eye had improved to 20/100. She was actually reading the tall letters
on the wall while her left eye was covered! Amazing. Her left eye had
improved a little as well, it is now 20/70. We have noticed her vision
improving in her every day activities. She can read the license plate of
the car in front of us on the highway now. She continues to make puzzles
and cut out coupons, with more ease than 2 months ago. 

Since the last update Jenny was back in the hospital October 27-30 while we
switched her to the foscarnet. Dr. Davies wanted to monitor the impact
foscarnet would have on Jenny's kidneys and electrolytes (ionized calcium,
magnesium and phosphorus). Every detail is carefully monitored by Dr.
Davies, nothing is left to chance. Thank God for Dr. Davies' strength,
intellect and attention to detail. We shudder to think where we might be,
if she hadn't stepped in and took Jenny's case back in January.

We are giving Jenny IV bags of TPN every night for 10 hours (again) to keep
her kidneys hydrated while she's on the foscarnet. The Home Health Care
delivery man comes with 2 large shopping bags of IV meds every week. For
the families that have gone through this, you know what I mean when I say
that we thought we were done with all of that months ago. Sometimes it
feels like progress is slow, and it is -- but it is still progress and we
consider each day with Jenny a blessing. 

We had another RFLP test done at the end of October and Jenny is still 100%
engrafted. That means that all of the blood and immune system cells in her
body are made by her donor's bone marrow. Her alpha-mannosidase level is
still comfortably in the 'normal range'. What that means to us is that the
transplant is 'taking hold' and it is making enough enzyme to stop the
progression of alpha-mannosidosis. Just typing those words gave me goose
bumps. 

Jenny is a miracle child and we pray that these advancements will continue.
She always uses all of her energy to improve and get better. She doesn't
waste a minute feeling sorry for herself or getting angry. She truly is the
strongest, bravest person I know.

We are seeing the light at the end of the tunnel. Now that Jenny is making
her own blood and platelets we only go to clinic once a week. We still take
vials of blood to the U every other day in order to monitor her counts and
electrolytes, as a precaution until Dr. Davies is assured that Jenny's
system is stable.

We are so thankful for your prayers and support - they definitely make a
difference. Please continue to think good thoughts of Jenny and keep us all
in your prayers.

Love,
Steve, Dianne, Jenny and Jason 

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