Saturday, February 16, 2008

Sunday morning

John, Anna, and Dillon sitting on the floor. Dillon between Anna and John, each with a hand resting on Dillon. Jim Allan sitting behind them in a chair, a hand on John's shoulder.Happy Sunday all--Both of us wish we could go to dance and then have a nice brunch like we usually do on Sunday--Perhaps we can have a modified version--At least listening to fun music on our boombox and eating goodies I can bring from La Madeleine in Rice Village. We'll see how John's stomach feels later. He's has some stomach problems--perhaps from antibiotics, perhaps from something else.

The photo on the right includes Jim Allan and Dillon, who along with Diane Colvard and Jack McKinney came to visit on Friday. Not showing in the picture are Diane, Jack, nurse-photographer Josh, and John's IV pole. With doctors' permission, we all got to hang out together in the lobby of this hospital, an area called "The Fountain," from 1:30 til almost 5pm. We ran into Dr. Forman's fellow and resident, who had been on their way to our room, and they checked John out in the lobby. I think everyone had a great time and Dillon seemed to love alternately snoozing and watching all the people come and go. Josh and Jim even bundled John up with blankets in his wheelchair and took him outside and around the building. He loved the fresh air. John sat on the floor with his hand on Dillon for just about the entire 3+ hours.

Back in our room, we've seen doctors and John received a chest x-ray. The x-ray looked very similar to the one they took when John came to the emergency room on Tuesday the 5th. This means they are keeping him on all of the antibiotics to continue treating the pneumonia. Dr. Hosing doesn't seem particularly disturbed with this; she said it often takes a while to clear the pneumonia, but I am asking her and the bone marrow team if they can reduce one or both of the immune suppressants John is still on (Cellcept and Prograf) to allow more of Peter's immune cells to fight the infection. There is no formulaic answer, apparently, to how long they keep bone marrow recipients who have had graft-vs-host disease (GVHD) on the immune suppressants. In John's case, they are acting "conservatively" as they would hate to unleash another round of GVHD--requiring mega immune-suppressing steroids--in the middle of the pneumonia and alleged brain infection. On the other hand, if they don't get the progress they want, they will reduce the immune suppressants. So it's all very tricky timing, a combination of science, intuition, and guesswork--a dance I suppose. John is still coughing, though looser, and takes oxygen off and on, as his "room air" oxygenation sometimes drops below 93% where they would like it. He feels a bit tired, but in pretty good spirits for all that he has gone through.

On the head front, facial muscles seem more normal, but not totally resolved. The fluid drained from the ear seem to be clear and not infected. Speech seems to be less slurred sometimes but then other times, the same--hard to understand. A speech therapist has come twice to help him speak more slowly and "over articulate." Honestly, there have been so many ups and downs with these symptoms, I have lost my ability to discern when things are a bit better, worse, or the same. Same with doctors and fellows and medical students who come in teams to visit John--they ask one another whether the symptom is better or not. MRI of the brain with anaesthesia for John--so that he doesn't move--is scheduled for Friday. They want to be able to precisely compare the pictures with the earlier MRIs in order to get a trend--lesions reducing, same, or enhancing? Our guess is that they are same or reducing and hope is that they are reducing.

With continued infusions plus physical, occupational and speech therapy, I would imagine we will be in the hospital until Saturday or longer. Your visits, messages, and calls are feeding John's and my spirits and bringing us up from the low points. Yesterday dancing friend Bonnie Lambourn of Houston visited. Today Mark Van Gelder and Kimbah of Austin will stop by. Tomorrow Steve Ausbury from NY and fiance Rachel are coming to see John on way to Austin. Our brother in law, Dennis Frank, is here from Albany to see ailing father, and plans to stop in. Ledia, Paul, and Wolf had to postpone their trip from SF because Wolf and Paul had fluish colds, but they are planning to come after everyone's well.

We love you and thank you for all of your support.
Anna and John


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