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The International Society for Mannosidosis & Related Diseases, Inc presents:
[jenny home][introduction][background][journal entries][photo album][write
me!]
March 17, 2001
No change and no answers
Subject: [JennysHope] Update #29 No change and no answers
From: "Smith, Dianne" <dianne.smith@mpls.frb.org>
Date: Sat, 17 Mar 2001 15:04:52 -0600
Jenny has continued to get weaker and weaker. She has been totally
bedridden since Thursday, March 1. We have taken her to many doctor
appointments and done numerous tests. So far everything has come back
normal -- her pituitary gland, adrenal gland, thyroid, the EMG and
connectivity tests are all great. The MRI of her brain is also completely
normal. What we are beginning to surmise is that this physical shutdown is
like the neurological shutdown last April. This time the muscles and nerves
are shutdown while the new enzyme is cleaning out all of the old dead cells
from the 23 years of alpha-mannosidosis. We are hopeful that this will be
resolved someday soon. In the meantime, Jenny is so weak she can't even
open the cap of a chapstick.
Next week we will see a new Neurologist at the U of Mn and hope that he will
have some new ideas of things to check out. If anyone that sees this e-mail
has some ideas of things to check, please contact me.
Jenny's spirits have continued to stay positive. She absolutely amazes
everyone that knows her. She doesn't waste any of her time complaining or
whining. She is always trying to do things for herself and only gives up
when she is completely exhausted. She is always calling friends and family
and watching movies, videos and TV. She held a recipe magazine for about 5
minutes today. Steve or I are with her at all times and she is quite
talkative and extremely pleasant; as dear as ever.
Jenny's bone marrow transplant appears to be done. Her platelets are at
99K, Hemoglobin 11.2 (she did get 2 units of blood on Wednesday) and white
cells are at 7600. She caught a cold in February and fought it off faster
than Steve fought his cold off. She only takes penicillin and norinyl
orally. And she still gets intravenous Foscarnet (for the CMV virus that
damaged her eyes) and a ten hour bag of fluids every night with proteins
and electrolytes. Jenny's blood and immune system is almost as strong as
yours and mine. We are not giving her any more anti-rejection drugs - she
is on her own with the new marrow and DNA and everything is working like it
should. We just need this one more miracle.
Please continue to keep sending your good thoughts and prayers our way.
Love,
The Smiths
Steve, Dianne, Jenny and Jason
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