Jenny’s Journal September 27 2000
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The Best is Yet to Come!
From: “Smith, Dianne” Dianne.Smith@mpls.frb.org
Date: Wed, 27 Sep 2000 19:20:22 -0500
This e-mail is coming to you sooner than usual because for a change I don’t have to wait for something good to happen so that I can end on a happy note! This past 3 weeks have been nothing short of incredible.
Jenny’s neurological function has continued to improve at a phenomenal rate. Her speech is more fluent, her memory is completely intact, she is coherent and alert throughout the day. The periods of delirium are few and less than 1-2 minutes in duration. The good days out-number the bad days. In fact; they’re not even bad days anymore, just a few bad episodes once or twice a week.
When I discussed this turnaround with Dr. Davies, she indicated that she has thought this over many times as well. It is quite baffling and it wasn’t expected that Jenny would return to this level of functioning. Dr. Davies feels that the only medical explanation is that the donor’s (Todd’s) enzyme is in all of Jenny’s cells now. Jenny is 100% engrafted – her cells are all gone, only Todd’s bone marrow is making cells in Jenny’s body and his cells make that necessary enzyme, alpha-mannosidase. The new cells were expected to cross the blood/brain barrier one year post transplant, so we are sure they are in her brain now (Jenny is 15 months post transplant). When the new cells got to her brain and saw all of the old, unsloughed cells that were clogging the brain, making it next to impossible for Jenny’s brain to keep functioning; they had to shut everything down so they could get to work. As areas of the brain were cleared out, certain functions came back. For instance, after the first 5 weeks Jenny could feed herself again. After 9 weeks she could answer simple questions and follow simple directions, etc. It was a slow, methodical process. Remarkably, after the initial neurological shutdown, Jenny thought the current year was 1984 and she was concerned about issues for that period of her life. Then after about 4-6 weeks, she thought the year was 1988, etc. The progression in time was about 3-4 years each time and she would stay at that timeframe for 4-6 weeks. Until September 2, Jenny said the year was 2000 and she knew that she is 24 years old. From that day on, her neurological healing took place in leaps and bounds. Every new day brought new skills, interests, lots of conversation and hugging and laughing and smiling. Jenny has come full circle now and is back to where she was prior to the shutdown in April.
Jenny is such a blessing. Her strength and courage are second to none.
There are still areas that we hope will continue to improve: her balance/coordination, her vision and her strength (the steroids that she is on make her very weak, her muscles are greatly reduced). Whether Jenny will continue to get more mental functioning back to get her skills higher than they were prior to the transplant is a mystery. There isn’t any clinical evidence to support that hope, but Jenny has amazed all of us more than once. So we continue to hope and pray for the best in that area too.
Jenny’s vision is coming back as well. On September 11, her left eye was 20/80 and the right eye was 2/200 (still blind). But the Retinologist said that he saw more improvement in the 5 weeks on gancyclovir than he would have expected to see over 3-4 months of healing. We will see him again on October 5 and we will hope both eyes are greatly improved again. Jenny has been reading her cards, notes, e-mails and recipes again, so we’re beginning to believe we caught the CMV in time.
We did have to go back into the hospital last week for two days. Jenny ran a 103.1 fever in the middle of the night (Thursday at 2 a.m.). She woke up because she had a pain in the back of her head, down near the brain stem. After a few minutes of massaging her head lightly, the pain subsided. I just check her temp because she felt warm. I was shocked that it was so high, she hasn’t had a fever since January. Anyway, none of the cultures grew anything in the lab, so we were discharged. Jenny’s body fought off whatever it was that caused the fever. Her white cells are ‘getting smarter’ and know how to fight off infection (when the new marrow starts making white cells, the doctors call them kindergarten cells because they’re in the body, but they don’t know how to work, what they should attack, they’re not much good until they get smarter) Jenny’s white cells are now at that stage. As far as vaccinations, Jenny will be eligible to get her newborn vaccinations in June 2001.
Jenny hasn’t had a blood transfusion in two weeks (a new record) and she is only getting platelets once a week for the past two weeks. That new bone marrow is busy now. Is that progress or what?
We can’t totally celebrate Jenny’s progress and let our guard down. Whenever we see how rough other children have it, we know things can change in a split second. We’ve seen it happen so many times.
Please continue to keep us in your prayers. All things are possible with God’s help.
We truly believe that the love and support from friends and family has helped to keep us strong. We are indebted to all of you.
Love,
Steve, Dianne, Jenny and Jason
