Jenny’s Journal July 6 2000
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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 on her webpage.
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
