From: “Smith, Dianne” Dianne.Smith@mpls.frb.org
First the bad news: (if you’re impatient, skip to the end for the good news!)
As many of you already know, Jenny has had some setbacks and recently has become very weak and zombie-like. In fact, she has been back in the hospital since Friday. Jenny was running a fever that got to 102.2 and she has not been well at all.
At the hospital, the nurses could not allow us to give Jenny her medicines. The hospital must provide them. So the nurse asked us for a current list of Jenny’s meds. When pharmacy was filling the request, they called the nurse to tell her that if Jenny is receiving gancylovir for her CMV flareup, she cannot take the acyclovir. That would cause toxicity and could lead to serious problems.
As we’ve seen Jenny get weaker, “foggy” and lethargic; we’ve been questioning what is going wrong, each day at clinic. The response was simply that a bone marrow transplant has many ups and downs (the rollercoaster was their term). The Nurse Practitioner that is responsible for altering Jenny’s meds has indicated that she left a message on our answering machine to tell us to stop the acyclovir (we see her almost every day, she could just tell us face-to-face and we never received that message). Anyway, as a result of this overdose, Jenny has been through the hardest 12 days of her life.
The toxicity that has caused all of these recent problems is leaving her body and tonight she looked a little more coherent. Jenny rarely speaks and is quite remote; so it is difficult to know what she is thinking or feeling right now. Jenny is quite weak, but constantly tries to do as much as possible by herself. Her will to survive is unparalleled.
The CMV is not totally under control at this time. If it becomes inactive, we will leave the hospital. If it continues to rise, the doctors have indicated that it could mean Jenny has an infection in her spinal fluid, a spinal tap would determine that. We will hope that the CMV will be inactive with the next test. Enough bad news.
Now the good news: Jenny was diagnosed with alpha mannosidosis via a blood analysis at a lab in Thomas Jefferson University in Pennsylvania. Jenny’s mannosidase level was 2.3. A normal, non-carrier’s mannosidase level is 200+. Jenny’s blood was drawn on Day +30 and sent to Pa. Jenny’s mannosidase level is 281.3!!! There’s also a “Note: Mannosidase enzyme activity is normal.” on the document.
This is what our goal has been since Jenny was diagnosed on October 13, 1998. The hope and encouragement that comes from this wonderful news and your prayers will continue to sustain us through this and future setbacks.
Love,
The Smiths
Steve, Dianne, Jenny and Jason
