Tuesday, February 05, 2008

Mystery still unsolved, John weaker, To Houston...again

Hi all: This is just a quick note to many who've been following and especially in Austin--the folks who've signed up to help this week with rides and food for his infusions.

John is getting weaker and weaker. At first we thought it was the ambisome treatments that cause chills and chest pains and some nausea. But John's walking is getting worse--he can't go more than a few steps (and has to have help doing that) and his talking is remaining slurred and hard to understand. Also he is very very tired.

Yesterday, I contacted both Dr. Tucker and Dr. Andersson re: these symptoms and they each said that this is not at all normal for the ambisome and that something is not right. Both suggested that we bring John to MD Anderson. Mason flew in last night and we will drive John to Houston today, arriving around 2 to admit John via the ER process. They will notify both Dr. Forman and Dr. Andersson as soon as we arrive. After a few hours of observation and tests in the ER, John will likely be in the G11 wing in the early evening timeframe.

Dr. A told me that John will probably undergo a similar process as he did last time--MRI, spinal fluid test, bloodwork, and that they will evaluate what appears in the brain area and make a decision about next steps. He said they may be "forced" to begin radiation to treat the next possible cause of these symptoms---cancer in the brain--either leukemia or another kind of brain cancer. He was sad and sorry, as there are more risks and weaknesses that are associated with radiation now, but said they may not have a choice because they can't let his brain functions deteriorate.

Under the "best" scenario, we will see further reduction in the shadowy places on the MRI and he will undergo the rest of his ambisome in the hospital and remain there until he is stronger and starts some rehabilitation. I assume that no matter what, he will be in the hospital for at least a week or 2, and possibly more. I cancelled my 3-day training gig that was to start today and will remain focused on John until he gets better.

Obviously all diagnoses are speculation until we are examined today, so I will keep you posted. Meanwhile you can locate John via hospital phone 713-792-2121 or his cell 512-784-7533 or me through cell 512-431-6619. We will have a room at Rotary House, 512-790-1600, and will pursue getting a suite by this weekend so people can visit, camp on the floor or sofa bed. Also when Mason leaves other bed will be available as I sleep in John's room and just keep clothes there. I welcome all visitors and all email and all cards, etc. The love we share with so many is our biggest solace.

Love, Anna


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