The 2012 International Conference for Glycoprotein Storage Diseases and the extension of the Natural History Study will take place in Charleston South Carolina July 27th - July 30th 2012.

log8

July 15, 1999

From: "Smith, Dianne" <Dianne.Smith@mpls.frb.org>

Since we got home from Fairview-University Hospital on July 7, we have become efficient RNs. We have been hooking Jenny up to an IV at night, flushing the lines and changing the dressing to the Hickman catheter, and doling out pills like never before.

Jenny continues to get stronger, her WBC are at 4800 (without the white cell stimulator since last Thursday). We received wonderful news yesterday, the University of Minnesota told us that 100% of the blood cells that Jenny's body is producing are donor cells!

Jenny is experiencing mild Graph vs. Host Disease (GVHD). It is being controlled with steroids and steroid creams. The doctors have indicated that this was expected and it must remain mild.

We are taking Jenny to the BMT Outpatient Clinic at the U of MN everyday so they can draw blood, check her levels and adjust her medicine and/or infuse blood or platelets, as needed. The doctors are hinting at reducing some of her medicines and also making our trips to the clinic less frequent. That would be great!

We are constantly overwhelmed with the positive direction Jenny's transplant has taken. There is no doubt in our minds that much of it is a result of Jenny's positive attitude which is sustained from the prayers, calls, cards, letters, and words of encouragement from all of you. We are so grateful.

Continue to keep us in your prayers.

Steve, Dianne, Jenny and Jason 

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