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.

Wednesday, May 30, 2007

Wednesday +414 (Evening) Kicked Out!

Well, it has been almost a month since my last posting. We are back at the Mayo Clinic for a three month checkup. We flew up yesterday in the plane. The trip was 2:21 from wheels up to wheels down. That sure beats and 11+ hour drive! We had a tailwind and our top speed at one point was 274 mph. Most of the trip was above 230 mph.

Jackie had the usual round of appointments today. Bloodwork early this morning followed by a Pentamidine breathing treatment followed by a CT scan and then finally the visits with the doctors. I would like to point out one of the amazing things about the Mayo Clinic at this juncture. Jackie had her CT scan done at about 12 noon. Our first visit with the doctor was at 1:30. They already had the CT scan results back and analyzed upon our arrival. One and one half hours from scan to result in the doctor's hands! In Tulsa (or many other places) this would be a 3-4 day process!

Our first visit was with the transplant team and Dr. Hogan. He felt that she was doing so well it was time to "kick her out of the nest" and move her back to the hematology side of the clinic. We then went to visit with Dr. Clive Zent. Dr. Zent was the first person we met with upon our original arrival at the Mayo Clinic. It seems like years ago, but in reality it has been slightly less than two years. During our chat with Dr. Zent we learned that Jackie was the first "mini-allo" or "reduced intensity" transplant done at the Mayo Clinic. It is still far from common but they do about one per month. Prior to the mini transplants the patients got massive doses of both chemo and full body radiation. A great many died as a result.

Both Dr. Zent and Dr. Hogan are very pleased with Jackie's progress. Both hesitate to call her cured, but they are optimistic that she will not have to deal with full-blown CLL again.

Jackie quit most of her steroid usage about a week ago. She is still taking Cyclosporine, but only in small doses. They will be tapering her completely off her small steroid usage over the next several months. If she is able to tolerate no steroids she will begin to taper the Cyclosporine. They did place her back on penicillin as well as an anti-fungal as prophylaxis against infection. They continue to stress that she avoid being around sick people while her system is immunosuppressed. They also stressed that she should avoid any exposure to the sun. CLL patients are far more likely to develop skin cancer.

All-in-all, a very good report! We report back to the Mayo Clinic in two months. Jackie is already talking about asking the next visit be extended to three months since it has been three months since our last visit.

Until next time.....


Bruce and Jackie
From The Mayo Clinic
Rochester, MN

Thursday, May 03, 2007

Thursday +387

Just a quick note to update the blog for anyone still following Jackie's progress....

Jackie continues to do well. She just passed one of the first true tests of her constitution after the transplant - she caught a cold! She had the sniffles and some chest congestion just like everyone else; and she cleared the cold in about 5 days - like everybody else.

Her blood counts continue to do well. Essentially all the counts are within normal ranges. The few fractional portions of the CBC are only slightly out of range. She continues to reduce medication. She is still taking more steroids than we would like, but they are being slowly tapered. Her appetite has come roaring back. She is hitting the home gym for 1 hour-per-day workouts.

We return to the Mayo Clinic in late May for a checkup. If all is well we will be headed back to Nantucket for the summer. For those who know us and for those who have followed the blog since the beginning you will remember that Jackie first "crashed" 2 years ago while on Nantucket. We haven't been back since. We are certainly looking forward to the return.

Until later....

Bruce and Jackie
From Pryor