No change and no answers

From: “Smith, Dianne” Dianne.Smith@mpls.frb.orgSubject: [JennysHope] Update #29 No change and no answers
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