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, May 12, 2006

Friday +30 (8:15 PM) Spring in MN

Spring in MN. Last night it snowed just north of here. Today the noon temperature was 38 degrees with rain. The high today was 45. Around here they think this is Spring. I'll bet people were wearing shorts today:)

Jackie did well today. She had some nausea, but it was much better than days past. Her appetite is still poor. That's due to things not tasting as they should. Things she used to eat all the time either have no taste or taste horrible. What doesn't taste horrible? Doritos and almonds. Even the nutritionist that meets with us everyday is amazed these taste normal. Oh well....whatever works.

Jackie's energy level is still very low. She doesn't feel like getting up and being very active. The apartment is so small that walking around it doesn't provide much exercise. About the only exercise she is getting is from the trips to the hospital. I try to get her to stay out of the bed and off the sofa, but the nausea meds make her sleepy.'s my plan...

I asked her if she felt like taking (and making) phone calls. She said she still didn't feel like talking on the phone a lot. I, on the other hand, think it would do her some good to at least get some calls. It will force her to be awake and, in most cases, out of bed or off the sofa. I don't think it is good that she gets deluged with calls so let's try this:

If your first name begins with A-M feel free to call her on MWF. If your first name begins with N-Z (we don't know any Zeldas I don't think) feel free to call her on TTS. We will give her a day off on Sunday! I would suggest a time of 11:00AM-7:00PM. We usually are at the hospital until at least 11:00AM so it wouldn't do any good to call before then. After 7:00 PM she is usually tired from the days activities and may go to bed early or be napping. So this leaves the afternoon and early evenings. I think the activity will do her some good! PS. Don't tell her I posted this until she is MUCH better!

Jackie's counts from yesterday were all down a little. Nothing big and no real concerns. The doctor once again told her she was the transplant poster child. I asked about doing another chimerism study. This is the one that determines the percentage of donor to host cells. He said there was no need for a study that he was certain the results would come back at nearly 100% donor cells given her current blood count numbers. I also asked about a PCR (polymerase chain reaction) DNA-type test. This would tell us what level of CLL cells might still exist. He said that it would be done as part of another bone marrow biopsy done at around day +100. A good result for a PCR test will show no levels of detectable CLL cells. This isn't a guarantee that no CLL cells exist, but it indicates that there are very few and that any remaining cells will have a very tough time reemerging and successfully fighting the new immune system.

As for actual counts they are: Here RBC (Hgl) count today was 9.8 down from 10.0 yesterday. Her WBC count was 3.7 down from 5.0 yesterday. Her platelets were at 131 down from 161 yesterday. These are all still good with the general trend upward.

Phone numbers: Jackie's cell is 918-530-0124.
We also have a phone in the apartment. Until now we haven't given it to anyone (including family, kids, and friends). It is: 507-424-4252.

We will test the "phone on alternate days" program. If it seems like it is too much for her I may ask that we return to the old policy of no incoming calls.

Until Later,

Bruce and Jackie
From Rochester, MN


Anonymous Anonymous said...

Bruce and Jackie- Your weather sounds like our spring on Nantucket- it has rained for a week now ; with chilly days. We are still having fires in the fireplace.
So happy to hear Jackie is having some better feeling days.
Happy Mother's Day Jackie.
We love you
Sandra and Deano

5:35 AM


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