Saturday, July 09, 2005

Anna tells our friends what's going on

Hi loving friends: Most of you already know (and a few don't--sorry if we haven't called yet) that John has been in St. David's Hospital in Austin for 2 weeks with Acute Myeloid Leukemia. He wants to say hi to all of you (and many others I don't have email addresses for) and thank you for your love, prayers, positive energy, visits, gifts, and help of all kinds.

He is feeling a whole lot better today, having completed his chemotherapy with few problems (so far only a reddish purple rash all over his extremities)—now a lot stronger and able to walk down the hall with his walker and IV.

He'll be here another 2 weeks or so with the follow up plan from smart (and fun :) oncologist Tom Tucker being outpatient consolidation chemotherapy one week a month (M, W, &F)  for 4 months. John plans to resume normal (OK not superhuman:) duties as soon as possible and he still intends to deliver a keynote conference address in Asturias Spain the week of Thanksgiving.

As you may also know, we brought John into the hospital on Sat 6/25 with shortness of breath and leg swelling that our internist thought was a heart problem. It turned out that his out of control white blood cells (all 238,000 of them) were working hard to shut down his respiratory & cardiac functions. The ER doctors made the leukemia diagnosis through a routine ER blood test and John was thrust into a whirlwind of activity the next morning including a bone marrow biopsy, leuco-apheresis (a dialysis-like process of cleaning out the white cells through some tubes placed in the jugular vein), and chemotherapy. The chemotherapy lasted 8 days and he withstood it well with little nausea or other problems.

However, his body was pretty wiped out in the beginning because of the excessively high white count (usual counts for people coming in with leukemia are under 100,000.) By the time they started the leuco-apheresis his count was 277,000 white cells. This made the leg swelling & shortness of breath even worse and he developed clots in lower legs and in the neck where the tubes were placed. These have required constant monitoring with x-rays, ultrasound & CT scans. After small clots were discovered in John's lungs a radiologist inserted an IVC filter into his vein between the groin up to just below the lungs to create a "badminton shuttlecock" effect preventing larger leg clots into the lungs. This filter cannot be removed and we hope will cause no problems.

Also he had some pneumonia upon entry and is slowly recovering from that. So the punch from the initial wild white cells has been the worst part of John's adventure so far.

And now for the important part: Where is Dillon? For the first few days of this adventure, Dillon was living here at the hospital along with John and me (John has a large room and I have a permanent rollaway). Drs. were fine with it so I and others were taking turns taking Dillon for walks, but he was having to lie quietly most of the time while John lay in bed. Then the wonderful Morgan Watkins, John's UT colleague and fellow graduate of Guide Dogs for the Blind in San Rafael, CA(Morgan's also on the board of directors there), stepped in along with the support of his wife Dede, son Richard, guide dog Will, retired former guide dog Fantom, and pet dog (all 3 dogs are golden retrievers). Morgan and Dede are hosting Dillon during John's stay here. Morgan has also practiced guide dog commands with Dillon every day and Dillon gets to play and sleep with the other 3 dogs in a large fenced backyard and his own third story guest "bedroom."

Update: Saturday 7/9 9:30 am. Dr. Tucker just walked in and confirmed that John should count on the Spain trip and I'm excited because I get to go too!

Bone marrow biopsy on Monday should tell us more re: how long this hospital stay will be--Will update you guys ASAP with results.

John wants to thank each of you again for your love and support and misses being with you "out in the world". He continues to enjoy the visits and food from local friends who are stopping by.

Please forward this to anyone you know who I've missed and feel free to write back so I can add your email address to this list.
Anna and John


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