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, April 21, 2006

Friday +9 (4:00 PM) Food and Phone

Just a quick note. Jackie is doing better. The docs doubled the amount of Lasix and she is responding to the increased dose. Hopefully the fluid retention will soon be a think of the past.

To make certain things are OK they gave her an echocardiogram this afternoon. I don't know the results. I'll post something as soon as I know anything.

Jackie has a rash that seems to come and go. It could be a rash caused by antibiotics or it could be the beginnings of some graft versus host disease (GvHD). If it is GvHD that is good. You need a certain amount of GvHD in order to kill of the CLL cells. This is what causes the cure for her disease. In fact, if the patient doesn't show enough GvHD they will back off the anti-rejection drugs to increase the disease. The goal is to get just enough disease to kill the CLL cells and then have your body return to more-or-less normal with no long term GvHD. It is a delicate balancing act.

Just as I write this from the apartment Jackie called (her first phone call so we know she is on the road to recovery) and asked me to bring over Club crackers, cheese, Peeps candy, and Twizzlers candy!

She told me that in the 1.5 hours I've been gone they came in and did three small skin biopsies. This will tell them if she is having a reaction to meds or the beginnings of GvHD. The doc taking the biopsy felt it was GvHD. Of course, GvHD can be a very serious situation. She still has a long way to go!

She also said the head of the cafeteria/patient kitchen showed up to apologize for the poor food fare. They wanted to know if the food in the Frequent Flyers Club was better. I wish I had been there to give them my input! We all know Jackie was too nice - something I'm not necessarily known for!

I would have told them that I had a lunch from (thanks to my brother and his wife) that was cooked, frozen, flown halfway across the US, heated in boiling water in a tiny apartment in Rochester MN and that tasted as good as anything you might find in a 5 star restaurant. My question would have been, "Why can't you do better?" The technology obviously exists!

Until later,

Bruce and Jackie
From Rochester, MN
PS. For what it's worth the folks at have a heck of a business model. I think they will do well.


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