Thursday, May 10, 2007

Better and better but still not out of hospital

Hi all: Anna here again. John is still in Room 1179 at MD Anderson in Houston. His computer is still not connected to Internet, even though he's been issued an account at the hospital--(hardware problem we need an expert to solve). When I go back to Houston on Saturday(from Austin where I came this morning), will try to have a service call made. Maybe it'll be fixed before he leaves:)---Which we hope will be Monday or Tues of next week. Jay Byrd drove to Houston today in time to stop at Nit Noi in Rice Village and get them Thai food for lunch. I arrived in Austin in time to have puffy chicken tacos with Diane at El Chile.

John truly is getting better now. No blackouts or dizziness today. He is walking and moving about far better than yesterday and the day before. John told me he walked around the entire hospital floor twice just now without a problem. The "treatment" has been lowering the steroid, Medrol, to almost nothing and removing another drug, neurotryptaline, which sometimes causes dizziness. Both of these take a while to work out of your system, so they are still observing if this is truly doing the trick. Doctors don't want to let him go feeling shaky or blacking out for a few seconds after standing or sitting (with rapidly dropping blood pressure--postural hypotension).

Other good news is that results of the many many tests done over the last 2 weeks are all negative. No cancer, viruses, other infections, GVHD, etc. He is good to go as soon as he's demonstrating more of what he's done today. Also, John is looking pinker in the face, smiling more, and acting more himself--more wisecrack jokes, etc.

As you can imagine, this has required a lot of patience. The clinical team visiting him every day, is clearly staffed by very smart and very caring folks, and yet these problems are complex and hard to isolate. John has received so many different kinds of treatments and experienced so many side effects that everything gets intertwined and they admit they get stumped and have to try one thing at a time. We are very joyful about the progress now however.

And now for the answers to the 2 most crucial questions: 1) Yes, we are still awaiting a wonderful grandson in San Francisco and 2) Yes, Dillon is leading a fabulous life--with dog whisperer Cynthia and her husband, and he is attended by a harem of stylish young women at the Cotton Club store in River Oaks where he goes to work every day--to be petted, lain on, and walked outdoors (in beautiful landscaping next to Smith and Hawken), etc. At night he sleeps in the master bedroom at the foot of Cynthia's bed in a big dog bed and he gets to play in their fenced 5-lot yard in the Heights with her 13 other dogs (many of whom she has rescued).

Love, Anna and John
John (512) 784-7533
Anna (512) 431-6619
annac@interactiondesign.com

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Saturday, April 28, 2007

Getting Better

Hi everyone: My cyto-megalovirus is on the wane and I'm feeling stronger. Just finished a dinner of shrimp in garlic olive oil with angel hair pasta and a dessert tart of raspberries & blackberrie with whipped cream. Anna brought this from Carrabba's on Kirby.

Jim Allan and KC Dignan stopped in after their visit to the Museum of Fine Arts. It was great to see them and they brought me homemade brownies.

We're listening to music and dozing. Anna made arrangements for Dillon's care and that's allowed us to spend more time together, which I really love.

My platelets were up today, which is a good sign. Liver enzymes were down--also a good sign, and other tests all good as well.

Ledia's baby is due any day now, and we're very excited. Mason is planning to fly in tomorrow at 2:30pm. It'll be so great to see him.

That's it from the MD Anderson front now; see you soon! If you'd like to write, please send it to annac@interactiondesign.com. I love hearing from you!

Love, John

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Wednesday, April 25, 2007

Another Quick Update

Hi everyone: We're still at MD Anderson. Today's been much better than yesterday. Dr. Andersson and his team came in early this afternoon and said they think they figured out what the problem is. My CMV count is very high based on test results this a.m. CMV stands for cytomegalo virus, which I keep imagining as something the cyclops hurled from his mountaintop when Odysseus jeered that he'd been beaten by nobody--and they've started me on new IV antivirals and antibiotics to address the CMV, and they're already working. I feel better, stronger, and more myself, and Anna said I even sound more like me.

Meanwhile, Anna has made amazing arrangements for Dillon. Emmie, Phyllis, and Phyllis' husband, are a lab-loving family from Augusta, Ga. who entertained Dillon in their suite again this afternoon while Anna visited here. Lisa from the hotel is dog-sitting Dillon in Anna's room from 3pm to 9pm. Anna was able to go out for Thai food at Nit Noi and we're eating it now. I had a shrimp spring roll amd ginger fried rice. Anna had Thai hot and sour soup

Wonderful Diane, who works with Anna, drove here last night with supplies--underwear, Dillon food, Anna's face cream, John's external music drive for computer, clothes to allow Anna to change from one outfit worn for 48 hours, etc.

A dog rescue advocate named Cynthia, friend of chaplain Hope Lipnik, will be taking Dillon to work at the Cotton Club retail site, near Smith and Hawken on San Felipe, from 9:30 am to 4ish.

Dr. Andersson predicts that we'll be leaving sometime next week after results for 1 week of anti-virals are shown. Tuesday-ish (May 1st--May Day) I imagine.

More soon. You can be in contact by emailing John via Anna at annac@interactiondesign.com or calling John at 512-784-7533.

Love, John (and Anna)

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Tuesday, April 24, 2007

Quick update from Houston

Hi everyone: We arrived at MD Anderson last night. Anna is typing this from my room, 1179, in the old familiar bone marrow unit where Dr. Andersson and his team regularly make rounds. Hopefully I'll only be here for a few days. I'd been suffering from muscle weakness, low blood pressure, and rapidly lowering platelets and Dr. Andersson thinks I either have an infection masked by the steroids or something called IPT--your immune system starts making antibodies to attack your platelets. They started me on 2 antibiotics by IV and I already feel stronger.

Anna and Dillon are staying in Rotary House. Lisa from the hotel is acting as dogsitter every few hours so Anna can visit me. Dillon, as before, isn't allowed on the floor with so many immune-suppressed patients.

What adventures! More news soon. Love, John

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