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.

Friday, June 02, 2006

Friday +50 (11:15 PM)

Sorry, this is a little late in getting posted. Jackie kept putting me off all day for her "video shoot". I finally got her to give me a few seconds. Believe me, I tried for more. I had a fancy introduction to use for what I thought would be a 4 or 5 minute "hello to everybody" video. It was like negotiating with a major Hollywood starlet. "Don't get any close-ups". "Let me get some lipstick on". "Let me change into some better clothes".

The problem I had was that she got very emotional every time she thought about thanking everyone that sent her the recent video from home. For those that may not know, we received a video from home with all her friends wishing her well. Due to the length I cannot include all the video. I took one small clip from it and posted it along with her "thanks". I'll keep trying to get more - I can be persistent!

In the beginning of her response she is laughing. This is because I said something funny trying to change her mood. By the end, she was getting teary-eyed again. In any case, she wishes me to reiterate her thanks again.

Ok, now for the medical part. We spoke with the doctor's this morning. Her chimerism test results were back and she is 100% engrafted. This is good news. They usually like to see 90% by day 100. She is 100% by day 50. She continues to have some severe back pain and nausea. The doctors think this may be as a result of one of the medicines. I believe it might be due to frequent muscle tensioning due to being constantly cold. It seems the transplant process causes problems with the body's regulation of perceived body temperature. In spite of warm weather, she is always cold. Each morning we walk to the hospital. The temperature will be in the high 70s and she will wear two sweaters. Hopefully this will resolve soon. If she had no back pain she would feel good most of the time.

I think there was an anomaly with the CMV test. One of the nurses said that other CMV tests conducted earlier in the week may have been in error. In any case they feel the higher level is the correct one. With a viral load of 4000 this is still not terribly high. They feel that one of her meds (Mycophenolate) is suppressing her immune system to the point that it is getting no help in fighting the virus. Someone posted on the blog that there is a 100% chance that her new stem cells will fight the CMV. This is correct. So...they are going to lower her Mycophenolate intake this weekend and see what happens. Unfortunately the level of this drug is difficult to measure in the bloodstream. It also takes several days before the levels drop. This means we will continue the twice-per-day IV infusions of Ganicyclovir. If that doesn't resolve the problem a change will be made to the meds.

Today turned out to be a beautiful day in Rochester. We had a late lunch at the Olive Garden again; Jackie's favorite chain/local restaurant.

Her is a very short clip from the Pryor video:

Here is Jackie's Thank You response:

Until later...

Bruce and Jackie
From Rochester, MN


Anonymous Anonymous said...

OK, now we're even. You said I made you cry after watching the video, and now you made me cry. It is so great seeing you.
The 100% is such great news. I bet the doctors realize just how special of a patient you are.


8:35 AM

Anonymous Anonymous said...

A review of the

Kudos to Star Jackie Sue and Director/Producer Bruce for this video.

To Bruce: for his unique special effects, photography, and his handling of a reluctant star.

To Jackie Sue: for agreeing to star under difficult circumstances. Fans are delighted to see her looking so well despite recent health problems, which, incidentally, appear to be on the mend. Her new short-hair style, while a change from her former look, is surprisingly becoming. She is delightful, upbeat, and an inspiration to us all. A generally feel-good video, although a teary moment from Jackie Sue at the end prompted a sympathetic tear or two from us as well.

A great video. Fans of Bruce and Jackie Sue look forward to seeing more of these in the future!

11:18 AM

Anonymous Anonymous said...

Okay, you made me cry. It was wonderful hearing your voice. We are still praying daily. The girls at my office enjoy reading the blog so I know they will be pumped to see the latest "smoking hot video". 100% is a blessing.


2:42 PM

Anonymous Anonymous said...

That's great news. I am so glad to see you. You look great. Thanks for the video. It does help to see you. It also helps to hear your sweet voice. You know that we will pray for you daily.
Bruce I just can't tell you how much it means to all of us to know that you are taking such great care of Jackie. LC

7:14 PM


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