One month ago, on November 30th, 2011 my beloved wife Jackie sucummbed to her illness. She was approximately 5.5 years post transplant. She was 53 years old at the time of her death.
Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.
Someone asked why I always list the number of days before and after transplant on the blog. It comes from the Vietnam era when men fighting in battle counted down the days until they could go home. At least that is the way this started. We counted days until the battle began prior to transplant. Now we count up the days from victory.
It has been about 3 months since the last update. I don't do these very often because I doubt anyone reads them any more. But just in case there is someone out there still following I'll continue to update from time-to-time.
Today is Easter Sunday and it has been exactly three years since Jackie Sue's transplant. Three short years ago the doctors at the Mayo Clinic hung a small bag of red cells on a stainless steel pole and our transplant journey began. Jackie's blood counts were at ZERO and her life hung in the balance!
We arrived yesterday about noon. We transported the father of the lady who is the marketing manager for the building we stay in to Rochester as well. He lives in Wagoner and came along for the ride so he could visit his daughter.
We arrived back in Rochester this morning. We were supposed to arrive last night, but mechanical difficulties delayed our departure until very early this morning. The weather was great and we overflew Canadian airspace and the Great Lakes on the way over. The new Mayo Clinic Plaza has been finished and they have a lot of street vendors selling and displaying everything from jewelry to homemade pies. It lends a carnival atmosphere to downtown. Summer in Rochester certainly beats winter in Rochester!
We returned to the Mayo Clinic about a week ago. While there Jackie had her last infusion of Rituxan. They also performed a biopsy on a spot on her hand. In addition they increased her Cyclosporine and CellCept in order to better get the scleroderma under control. There were discussion as to whether to begin UVA-1 light treatments immediately. A decision was made to wait one month to see if she improves.
Jackie's scleroderma continues to progress. It is still very painful. Fortunately her local doc is very understanding with regard to her pain meds and she is now getting enough to help make her comfortable.
Jackie was discharged on Monday. We are headed for home today (Tuesday). I can tell she will be "down" on her non-Prednisone days. They have changed her Prednisone dosage to a total of 30 mg every other day. On her "off" days her body will attempt to make natural steroids. At least this is the hope. On the off days we will probably see her GvHD flare as well. They tell us it will be at least a couple of weeks before the CelCept will kick in and begin to make a difference. Until then she will continue with the moist (wet!) pajama wraps. The warmer climate of OK will probably make this a little easier than MN.