Sunday +65 (10:30 PM) Father's Day
I hope everyone had a good Father's Day. I certainly did! The girls left this morning about 9:00 AM for flights back to Boston and Dallas at 12 and 1:00 PM. It was great to have them visit, even if just for a little while.
Unfortunately Jackie did not feel well much of the day. As everyone who reads the blog knows, she has good days and bad days. It is impossible to predict which ones will be good and which ones will be bad. To some extent her blood counts can be an indicator, but that isn't always the case. Today is a good example. Her counts continue to do well but she still is having difficulty with nausea. And of course when she is nauseated she doesn't eat or drink as she should. To date, she has lost more than 30 pounds during the transplant process. For the other CLL patients reading the blog you should consider going into the transplant with some extra pounds.
We met with the doctor this morning. He is very pleased with her progress and believes we can transition to clinic visits very soon. The only issue is the CMV. They will conduct another CMV test tomorrow and the results will determine what happens next. We continue to taper her Mycophenolate anti-rejection medicine. By day 100 she should be completely weaned. Hopefully her immune system is starting to fight off the CMV infection. The doctor believes this to be the case. If the upcoming CMV test shows a lowered viral load it is possible they will place Jackie on oral Ganciclovir. Note: I've been misspelling Ganciclovir for some time. I have been spelling it as Ganicyclovir. I originally googled the word to make certain of the spelling. I didn't notice that only 84,000 people had also misspelled the drug's name on their web pages (mostly Canadian pharmacies). When you google the correct spelling you receive about 10 times more hits. I guess it says something about ordering drugs off the Internet when the Canadian pharmacies cannot spell the drug name correctly!
As I mentioned Jackie's blood counts continue to be reasonably good. Her WBC count continues to decline, but the other counts are holding their own. Her RBC (Hgl) was unchanged, but good, at 10.7. Her WBC count decreased to 2.3 from 2.7 on the last two days. Her platelets continue in the normal range at 171 which is down from yesterday's 186.
Until later....
Bruce and Jackie
From Rochester, MN
3 Comments:
I am so glad to hear Tiffany and Brittany had a great visit with Jackie. I know it made for a wonderful weekend.
65 days and counting. I am looking forward to seeing you both in Oklahoma.
Happy belated Father's Day, Bruce.
Best,
Tyler Flann Harris
11:17 AM
I read your blog today for the first time and found myself unable to walk away from the computer. Bruce, your writing skills are very captivating! I will check the blog regularly now. Jackie, your strength and grace are truly inspiring. I wish you a speedy recovery.
Bob Sibley's grand-daughter,
Aubrey Marshall
4:39 PM
Bruce:
Loved the pics of the girls in bed with Jacki-know you all had a great weekend and Father's Day.
Jackie does NOT need the makeup- she is soo pretty as is.
Love
Dean and Sandra
7:37 PM
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