Wednesday, February 27, 2008

Brain biopsy Friday morning

Hi there loved ones: So much and so little has happened in the last few days. So much waiting for medicines to work--now around 6 weeks that John has taken anti-fungals and other brain infection meds. So much time back in the hospital recovering from the pneumonia and experiencing same plus additional neurological problems--like swallowing problems that risk John aspirating food into lungs (a possible cause of the pneumonia in the first place). John's balance issues were worse yesterday and the day before, and in fact he had a fall in the hospital room around 5pm yesterday after standing up in front of his chair. Will recieve x-rays today of hip area that hurts (they did x-rays immediately after the fall--but of the ribcage not hip!:)

So little is known about what is causing all of this havoc in the brain and no further clues have emerged from the lumbar puncture or the last MRI. So much discussion has occurred between doctors, and between doctors and us--and the only approach that makes any sense at this stage is to do the brain surgery for diagnostic purposes. Dr. Forman (neurologist), Dr. Champlin (head of bone marrow transplant department and attending doctor on BMT rotation now after Dr. Hosing is off), Dr. Guo (rehabilitation doctor on floor where we are and specialist in therapies for neurological issues), and Dr. Prabhu (neurosurgeon) and other neurosurgeons in the department all agree that this is needed. They have discussed the risks further, and at this stage, the biggest risk is that they may not get tissue that shows anything, as it could be an infection that we are already treating. But as Dr. Champlin pointed out, even this tells us something--that it's not leukemia or lymphoma or another cancer, each of which would be treated in a completely different manner. If it is any kind of infection, and we can determine what it is, medicines can target it more specifically.

We'll get more details in our discussion with Dr. Prabhu later this morning, but for now, the surgery is planned for Friday morning. It will take about 5 hours due to the fact that tissue will be tested during the surgery process to see if they have gotten an adequate sample.

With so much that has been missing, John and I have continously felt the wealth of your love and caring, and we will draw on that more and more in the next few days and weeks. Ledia, Paul, and baby Wolf delighted us with their visit from San Francisco from Friday til Tuesday. Wonderful Austin friends and John's UT colleagues Liz Cullingford and Evan Carton spent all day Saturday with John and wheeled him outdoors to lunch and for several hours in the garden at Rotary House. Hope Lipnick (Jewish chaplain at MDA and now fun friend) and her caring team of volunteers have been regular presences wherever we are in this hospital or clinic. My brother Rick and sister in law Evelyn joined us Saturday night. Plus there have been many very caring communications from folks like Penny Freppon (whom we met at Rotary House), Steve Schoonover, close friend and colleague--who happens to be a medical doctor and helpful adviser/sounding board, Rose Jackson (mother of sweet Frank Jackson). and my sister Patti. Mason is flying here tonight, and Peter Slatin (John's brother) will be here for the weekend.

Big hugs all around,


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