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July 26, 2000

Transplant is back on the track!

From: "Smith, Dianne" < dianne.smith@mpls.frb.org >
Date: Wed, 26 Jul 2000 10:31:43 -0500

So much has happened since I sent out the last update on June 5. Here is
the latest on Jenny's progress and news.

Jenny had another MRI of her brain on July 14. The neuro-radiologist at
Methodist Hospital (where this MRI was done) indicated to us that it
appeared to be normal. We took the MRI films with us, and on Tuesday,
July 18, we discussed them with Dr. Davies and the neuro-radiologist at
FUMC and they agreed with his opinion. The area on the brain stem that was irregular in
April, was now 'corrected' or normal in July. The neuro-radiologist at
FUMC saw both sets of MRI films, the one from April with the irregularity
and the current one from July 14th, without the irregularity. He said
that he has not seen that kind of change in an MRI of a brain with a
storage disease, ever-before. Dr. Davies was amazed and so are
we....amazed and so very thankful. We can't be sure what this means, but
we hope that it means that the donor's cells have crossed the blood-brain
barrier and cleaned up the damaged cells. This would seem logical because
the brain stem is on the other side of the blood-brain barrier. Isn't the
human body incredible? And isn't it amazing that a perfect stranger can
have such an impact on someone's life?

Speaking of our donor; we have had an opportunity to speak with our donor
on the phone. We will make plans to meet him when Jenny is doing better.
We want Jenny to be at her best when he meets her for the first time.
Jenny was quite emotional when she spoke with him, she had trouble
expressing how deeply thankful she is. Our donor is 23 years old and he was
raised with a 'help others' attitude. He was very pleased that he was able
to help Jenny. Do you remember that rare DR antigen that we were having
trouble finding (DR08 from Jenny's Greek grandmother)? Jenny's donor has a
Spanish grandmother. That's likely where he got the DR08, and like Steve
and I, the rest of his background is mostly German. Our donor was only on
the NMDP registry for 3 months when he got the call to be a donor! Talk
about answered prayers. For the remainder of our lives, we will always be
indebted to him for this wonderful gift - this chance at a good life for
Jenny.

Jenny has had some serious neurological improvements recently. In fact,
we just had 8 "really good days". On those days she walks with a little
assistance, she engages in conversation, she makes requests, she makes
choices, she can help a lot with dressing herself, she feeds herself, and
she can take care of bathroom issues with some help. All in all, those
days are a joy because we can see that our Jenny is still in there. There
are sill days that are not so good, but we continue to hope and pray that
the good days continue to out-number the bad days and soon that is all
that is left -- good days; and a real future for Jenny.

Thanks to Paul Murphy, Jenny's BMT photo album is now available in her
webpage at www.mannosidosis.org/jenny.htm.  Click on Photo Gallery or you
can see them directly at www.mannosidosis.org/bmtalbum.htm

We have done another analysis of Jenny's engraftment and she is currently
100% donor cells. Dr. Davies has helped us to salvage the transplant!
Also, Jenny's alpha-mannosidase (that all-important enzyme that she needs)
is currently at 264 -- that's more enzyme than Steve and I have together!
The bone marrow transplant is starting to get under control, even the
platelet situation is under control...thanks to Gary, Joeleen, Kevin and
Jeff! The bruises are vanishing from Jenny's legs and arms. We are in
clinic every 3-5 days now (instead of every other day). Now if only we
could just continue to see the neurological improvements, we will be so
very happy.

What an incredible journey this has been. Please continue to keep us in
your prayers.

Love,
The Smith 
Steve, Dianne, Jenny and Jason 

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