Dillon just aging: no cancer!!!!!!!!!!!!!!!!

Just got report from radiologists at Gulf Coast Specialty Animal Hospital that Dillon's lesion on sternum is just degenerative disease associated with aging and not cancer!!!!! (Rice Village Animal Hospital had thought it was bone cancer and had sent x-rays to radiologists at Gulf Coast). Also Dillon has a stiff neck which could be a pinched nerce "referring down" to his right leg--Thus the limp. Treatment is rest and anti-inflammatory pills. We are soooooo happy!! John cried with joy.

Thanks for all of your offers of help. For the people who've planned to visit, John would still love to see you. I am planning to carry out my plan to go to see grandson and family in San Francisco.

Please pray for Dillon; we are all 3 in pain

Anna: Dillon has had a limp for about 10 days. Last Friday, took Dillon to vet and she checked him out and made x-rays. Nothing showed up. Limp got worse--I took him back today and vet found lesion on cervical bone (breastbone--center of chest) and said it's probably bone cancer. We'll find out more tomorrow. We are weak with sadness. When I returned John asked nurse to disconnect IV so he could lie on floor with Dillon, crying, and feed him apple slices. Vet is sending X-rays to specialists who will probably order bone scan tomorrow. This is so hard. John should probably stay here even though he wants to go to specialist vet clinic with me. Since our whereabouts have changed so much, people don't even know that we are here and were told today that John should probably stay til next Monday or Tuesday to get him cler of IVs. If you can help, call or email us--John:(512) 784-7533, Anna: 512-431-6619. Email to either at annac@interactiondesign.com.

Love, John, Anna, and Dillon

Dillon with John in rehab unit at MD Anderson

Anna here again. Believe it or not, someone from MD Anderson's IT group is on the case of getting John's email up--thanks to Sharron Rush--who called and called....and they even came on a holiday weekend!!! We'll cross our fingers and blow on them--and then wait a day or 2 to see if the magic worked.

Dillon is now on the scene, and John and Dillon--with the help of wonderful occupational therapist Kathy--walked to the elevator yesterday and went to basement floor where there is a sweet "Beauty/Barber Shop" (free) for patients. John's rather thick beard (thanks to steroids) and fuzzy hair growth were trimmed and then they all came back up to our third floor room in the Rehabilitation Unit.

After spending most of Friday getting Dillon x-rayed to explore his limp (not serious it turns out), I did errands with Dillon and then brought Dillon to hospital to see John. I zipped back to Austin this a.m. while Jay Byrd drove the other way to take care of John and Dillon. We cross back tomorrow afternoon. John and Jay reported this evening that John's room has been moved to a bigger space, presumably to accomodate John't technology cords(external drive for music, speakers, computer, digital recorder, phone cord, my computer, etc.), Dillon, chair made into bed, visitors, etc. We just seem to take up a lot of space--mostly psychic I think. But all the nurses in this unit LOVE Dillon. Apparently Dillon spent most of the day at the nursing station and managed to visit every single room of the 29 rooms in the 2 rehab "pods". What a celebrity. I am catching up on work and errands. Followed neurologist's orders to get Alpha Lipoic acid and Brewer's yeast to help John's neuropathy while he was getting a follow up acupuncture treatment in the hospital.

We are so happy that the neurology team told us that John's tests are all clear, pending one cytology study of spinal fluid--(but it looks good on the preliminary report) which means we are not dealing with cancer, but the effects of chemotherapy and steroids--which is what we believed all along. Not necessarily 100% wonderful--but more manageable than more leukemia at this point.

What does this mean? John will be at MDA another 10 days probably to do more rehab of all kinds--He is dealing with "autonomic neuropathy" which impairs his body's ability to do things like adjust blood pressure when he stands up. John is already improving. A couple weeks ago, he really couldn't stand up for more than a few minutes on his own. Now he regularly walks in the room and outside of the room too.

More later. We love you guys. Thanks for all of your support.
Love, Anna and John

John graduating to rehab program at MD Anderson

Hi everyone: Anna here again with quick note. John is doing quite well! We had him home from hospital since Wed but he remained dizzy for a few days plus it was difficult to do all the IVs he needed for CMV infection at home. Came to MD Anderson on Monday and since then he's been steadily stronger, finished out most of the IVs, CMV gone completely. All blood counts great now. He'll be moving to a rehab program and new room on 3rd floor. Will work 3 hours a day (for 1-2 weeks) walking, walking with Dillon, practicing daily tasks, strengthening muscles, and compensating for neuropathy problems.

Plus through Place of Wellness here, favorite massage guy Curtis showed us how to massage from fingers and toes upward toward the brain, getting the fluids and toxins in his body to go away from the extremeties. We'll sign up for this and acupuncture too--all from the MD Anderson folks trained in these approaches.

I know John would appreciate visitors here in Houston. Our hotel room at Rotary House is available in the museum/Rice U area. When you are here, I may be in Austin or staying in John's room, so you can stay in the hotel room--831 with a king bed (rollaway available). Just let us know--John is at 512-784-7533, Anna at 512-431-6619, and email is annac@interactiondesign.com. John is on the Internet now, but not on his email.

Love and hugs, Anna and John

Coming home today!!

Anna here: Love to all of you!!!!!! The celebration continues. Just heard the news that last test John needed--bone marrow biopsy--was negative in this a.m.'s preliminary report, and we're ok to come home today!!! John has been in the hospital continuously now for 34 days and is ready to leave. Will pick up Dillon at the Cotton Club on San Felipe and thank the marvelous Cynthia.

There's still a long road ahead. John is weak and will have to receive IV fluids for a while as well as physical therapy/exercise and a lot of oral medications to build up strength and electrolytes, and to taper off the steroids and all of their side effects. John is currently using a walker, which will be a bit of a challenge--How to incorporate Dillon?

We would be extremely grateful for help (from any of you in the Austin area who are available) with the following things:
-Taking John to medical and physical therapy appointments
-Walking with John around house or outside
-Helping organize many pills
-Hanging around with him when he has IV fluids (not chemo--so he can do some of this alone)while I work, exercise, or dance
-Just hang out with him, read or talk, etc. and provide moral support
-Bring him food, especially protein items, protein smoothies or snacks

Thanks to so many of you during this whole time period--with calls, visits, emails, and your positive thoughts and prayers. We were really caught off guard by this long episide and you came through for us once again.

Love, Anna and John

9 lb 15 oz grandson born in San Francisco!!

The subject line pretty much says it all. Ledia and Paul's son, Wolf, was born at 9:30 pm last night at St. Luke's Hospital in San Francisco, with nurse midwife & doula in attendance. Very healthty baby we hear, and beautiful too (according to experts Mason and Melissa)!!

It was a wonderful happy close to what had been an otherwise tense day of waiting here in Houston for my doctors and news from the California gold rush:)

More later,
Love, John

PS Ledia's email address is ledia@media.mit.edu in case you want to send a message.

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

Still in hospital for 1 last thing & requesting visitors

Hi all: Anna here again while John the gets spa treatment--nurse assitant Robert is giving him a sponge bath.

The clinical team (Dr. Champlin is on rotation for Dr. Andersson, along with PhD pharmacist, etc.) just left and good news is that CMV infection is essentially gone; the counts have dropped enough to discharge John with tablets he can take at home. Graft vs. host disease is considered cured for now.

Only remaining issue is a bit difficult to manage--the weakness due to neuropathy in feet, myopathy in leg muscles, and autonomic neuropathy (creating blood pressure drop when John stands up or sits up)--this is nerve damage from chemo and possibly complicated by the steroids. He'll be getting some rehabilitation here in addition to physical and occupational therapy. Dr. Champlin implied it would be a week or two until he can go home, as they want to make sure he can walk safely without risk of falling. The autonomic neuropathy requires re-teaching nerves and may not be super fast to cure.

As this episode stretches out, it's becoming clear to us that we'd love to have visitors and we can use some help. We acknowledge all that you have already given and we're forever grateful for your amazing thoughtfulness during the transplant last summer and fall, and for your non-stop concern for John.

In the hospital, John can use various kinds of help--such as people walking around the floor with him, sharing meals and providing snacks, washing clothes in Rotary House, reading to him, providing company, etc. Outside the hospital, we may need help with Dillon at times. So far, lovely Cynthia, who is a dog rescue goddess, has him in her home and at her workplace during week days. I plan to pick Dillon up tonight and take him to Austin through Sunday.

I am now commuting between Austin and Houston. Although I prefer being by John's side, I also wish to continue my work, exercise, and dance. So there will be times when he is alone here. So far, we've had coverage--by Mason, Jay Byrd, and Peg (who will come tonight). Starting tomorrow (Saturday) afternoon when Peg leaves, John will be alone for 24 hours or more. He would appreciate phone calls if no one can be here.

To connect with us, please contact me at 512-431-6619, John at 512-784-7533, or email both of us via Anna's email address: annac@interactindesign.com

Lots of love,
Anna

Coming home soon!

Thia is from Anna in Austin--John is still at MD Anderson and Jay Byrd is there with him these 2 days while I work and dance! Ahhhhh--breathing out feels good.

John has been in the hospital so long because the steroids he's had to take for the Graft vs. Host Disease (pretty common event for transplant patients) knocked him for several loops--extreme weakness (that made it hard to even walk a few steps) and allowing an opportunistic virus to take hold, forcing him to go on a super strong anti-viral medicine intravenously.

Good news is that he's improving on all fronts and will be coming home early next week, we think. Doctors had planned to release early him this week. However, right after they said that he felt dizzy when standing up, leading to a CT scan and other tests--all negative. Dizziness episodes are somewhat common apparently and thankfully the dizziness has stopped. He is receiving daily physical and occupational therapy.

We appreciate all of your loving wishes and thoughts. You may call him 512-784-7533 or through the hospital 713-792-2121, Room 1179 or send email through me (his computer is broken re: connectivity).

love, anna
annac@interactiondesign.com