Today is a better day!
Wednesday 2/20. Thanks for so many encouraging emails and calls! At 8:00 pm we decided to do something fun to pick up our spirits, so we asked permission for John get off his IVs for a bit, so that I could wheel him over to Rotary House for dinner. It was lots of fun eating in the bar there, splitting a cheeseburger (plus John's onion rings and my salad) while watching the favorable election returns from Wisconsin and Hawaii.
Today we prepared a list of questions for the bone marrow team to answer and felt very positively about the answers. They ended up taking John down from the immune suppressants (to allow his own, i.e. Peter's to work), exchanged the anti-fungal infusion for a pill that has better brain absorption, and ordered a follow-up x-ray, which may lead to taking him off of some of the pneumonia IVs. They explained that a fungal infection in the brain may really really be slow to respond as the drugs penetrate slowly across the blood brain barrier and that as long as the MRI showed a "stable" result, we should wait for these to work. They really don't want to do risky surgery or start something like radiation. Radiation would be for leukemia and Dr. Champlin reiterated what Drs. Andersson and Forman had told us (but we continually forget) that if it were leukemia, some cells would have, by now, dumped into one of the many spinal taps or bone marrow biopsies, or been seen via the blood indicators. There has never been evidence of this. They do keep monitoring for leukemia, including a spinal tap tomorrow by Dr. Forman. So we feel a bit more focused, and have a positive attitude about moving to the Rehabilitation floor (8th) today or tomorrow for more work with walking and speech, along with same doctor's visiting.
We were comforted hugely by the visits of old friend Steve Ausbury and his lovely girlfriend Rachel Sokolow (amazingly with the same name as Judith Sokolow's lovely daughter) from New York. My brother Rick Rogers stayed all afternoon Monday and his calm patience with all that we were going through helped a lot too. Then our brother in law Dennis Frank came this morning and brought breakfast treats. Diane Colvard and DILLON and Peg Syverson are all visiting today and tonight!!! What a lot to look forward to!
Lots of love to all,
Anna and John
Today we prepared a list of questions for the bone marrow team to answer and felt very positively about the answers. They ended up taking John down from the immune suppressants (to allow his own, i.e. Peter's to work), exchanged the anti-fungal infusion for a pill that has better brain absorption, and ordered a follow-up x-ray, which may lead to taking him off of some of the pneumonia IVs. They explained that a fungal infection in the brain may really really be slow to respond as the drugs penetrate slowly across the blood brain barrier and that as long as the MRI showed a "stable" result, we should wait for these to work. They really don't want to do risky surgery or start something like radiation. Radiation would be for leukemia and Dr. Champlin reiterated what Drs. Andersson and Forman had told us (but we continually forget) that if it were leukemia, some cells would have, by now, dumped into one of the many spinal taps or bone marrow biopsies, or been seen via the blood indicators. There has never been evidence of this. They do keep monitoring for leukemia, including a spinal tap tomorrow by Dr. Forman. So we feel a bit more focused, and have a positive attitude about moving to the Rehabilitation floor (8th) today or tomorrow for more work with walking and speech, along with same doctor's visiting.
We were comforted hugely by the visits of old friend Steve Ausbury and his lovely girlfriend Rachel Sokolow (amazingly with the same name as Judith Sokolow's lovely daughter) from New York. My brother Rick Rogers stayed all afternoon Monday and his calm patience with all that we were going through helped a lot too. Then our brother in law Dennis Frank came this morning and brought breakfast treats. Diane Colvard and DILLON and Peg Syverson are all visiting today and tonight!!! What a lot to look forward to!
Lots of love to all,
Anna and John
posted by anna at 11:47 AM
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