Friday, January 18, 2008

Crazy Friday and requesting help from some Austin folk

It is 7:38pm Friday and we are still at the 10th outpatient infusion clinic ("ATC" for Ambulatory Treatment Center) at MD Anderson in Houston, while John completes his anti-fungal medicine called ambisome.

It was a very busy day in which an MRI, lumbar puncture (spinal fluid tap), lab visit for blood draw, visit to neurologist Dr. Art Forman, chasing down prescriptions to take to Austin, chasing down orders for daily infusions which will be at Seton Hospital 7 days a week (11-1:30 or 2pm), and many other tasks kept both Anna and Mason hopping at a steady pace while John underwent all of these exciting things.

Although we are still elated at getting to try treatments now (and holding off on the brain surgery), Dr. Forman, who'd been in contact with Dr. A by phone but not seen John since Tues am, is a bit worried about John--as his walking and talking are not getting better and the MRI is between the same and a bit worse than 1 week ago. Dr. Forman wants to follow up at the end of next week to see if the ant-fungal meds are helping John feel better. He said, let's give them a chance but I don't want to wait 2 or 3 weeks.

He would then recommend the diagnostic surgery to accelerate the targeted treatments.

So everyone--we really appreciate your positive prayers and visualizations of these 4 potions working and John back on the dancefloor of life--in the thick of accessibility activities and collaborations, writing, dinners and visiting, sweet friendships, creative problem solving, reading, researching, studying technologies, being at home, traveling---all of the things that he loves soooo much! Thank you thank you thank you!

Also, special request for Austin friends if you have some time to help (on top of what you have already done): I am very exhausted. Mason is returning home tomorrow. We drive back to Austin tonight (arriving around 11:30pm) and John starts tomorrow on his daily infusions. If any of you can volunteer to take, pick up, bring lunch, or all of the above for John on any days starting Sunday, it would be very very much appreciated!

He needs to be picked up at home around 10:45am and taken to Seton Hospital and walked into the first floor clinic for an 11am appointment, brought lunch to eat at the clinic, and then brought home around 2pm. Please email me if and when you can do and I will confirm back by email. Or you can call tomorrow after 10am at 512-431-6619. If you can't do this, there are other ways you can help us if you have a little time to shop, visit, or hang out at the house with John.

Lots of love, Anna


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