Monday, March 31, 2008

Photo, thanks, and text of service being collected for posting

John sitting in front of a window, his eys closed, wrapped in a lime green blanket In Memoriam, John Slatin, 1952-2008

Photo taken of John by Sally Weber, New Year's 2008 at "The Plant," country home of Dana Friis-Hansen and Mark Holzbach in Kyle, Texas

Love abounds and John was so exquisitely remembered and celebrated at yesterday's events! I love you all so much!
I am asking all of the speakers from yesterday (if I haven't talked to you yet) to email notes so that we can offer the text from the service on this blog.
Coming soon, we'll open it up for your everyone's comments on the blog re: your memories of John. Love, Anna

Thursday, March 27, 2008

Memorial service and BBQ party/remembrances this Sunday

Please join us for two events honoring John's life this Sunday, March 30:

Memorial Service 2-4pm
University of Texas Alumni Center (on UT campus)
2110 San Jacinto Boulevard, Austin TX 78712
Street parking and underground parking available on San Jacinto

Barbeque supper in the Hill Country (with vegetarian options)
5:30 pm on
Open mic for your remembrances of John, and music by LZ Love
Salt Lick Pavillion--Driftwood, TX location (note there are 2 locations)
18001 FM 1826 (30 minutes drive from UT campus)
Phone 512-858-4959

Love, Anna and family

Wednesday, March 26, 2008

Services for John, Sunday March 30th & informal Sitting Shivah

Hi all: Peter, Myles, Ledia, Mason, Wolf, Melissa, and I returned home to Austin at 7pm to a houseful of loving people to eat, cry and laugh with. More than a dozen angels from our dance group, having heard how traumatized I felt about walking into the house so infused with everything "John & Anna," had re-arranged furniture and wall art in the whole house to make it fresh and comfortable! Larkin Tom and Mason's friend Michael Cote brought food. Diane Colvard directed and brought Dillon! I curled up on the floor with Dillon and it seemed he was glad to see everyone.

We would like to continue this version of the Jewish tradition of "Sitting Shivah" from today through Saturday (March 26-29) 3:00-7:30pm each day. In Sitting Shivah, the mourners are comforted by friends' coming over and talking, eating, drinking, and having this special time together. You are invited to stop by 405 East 35th (near Duval) and sit with us. Joining our family today will be Ledia's husband Paul from San Francisco and my sister Patti from Albany.

Services will be held on Sunday, March 30th in Austin. Exact times and locations are still being finalized (to be announced later today) but we know it will be something like this:
Sunday, March 30th
Memorial service--early afternoon
Dinner & remembrances of John/Open mike 5-9pm-ish
Love, Anna

Tuesday, March 25, 2008

John passed away peacefully 10pm Mon, March 24

John passed away at 10pm tonight in the presence of Anna, Peter, Mason and Melissa. His breathing became softer and breaths further apart as Peter told him it was ok to let go, and we had just started playing Lakshmi's gentle meditation CD. Ledia, Wolf, and Myles joined us in the hospital room a few minutes later.

Earlier Lakshmi Jackman, Sharron Rush, Celia Hughes and John Van Strien had visited John's room and gone to dinner with Anna, Myles, and Peter at Shiva's Indian Restaurant in Rice Village while Ledia, Wolf, Mason and Melissa stayed with John. Earlier, Laura Rose and Greta had visited, done hands on healing on John, gave Anna and Peter neck massages, and danced to gospel music with Anna. It felt like a very healing day, with blessings from so many friends and family.

More information about services coming soon.
With love, Anna

Monday, March 24, 2008

Medicines pulled, John will pass soon, his soul will live on

Today, Peter, Mason, Melissa and I were here when Dr. Jones told us that John's kidney and lungs were shutting down and that the liver and heart were very stressed. Also platelets are extremely low. We made the tough decison to take the doctor's recommendation and pull away all of the medicines that would prolong his suffering. Also they willl do no more blood tests as it would cause bleeding. The doctor said that John would likely pass away any time between today and before a week is over.

Myles came into the room and Hope Lipnick, Jewish chaplain, joined us to recite a special Hebrew prayer for John to bless his passage at the end of his life. All of us held hands and said the prayer. Ledia joined us and then Laura Rose and Greta Gardiner from Austin walked into the room to spread the love. Everyone is sad. Everyone knows John's life is all about love and making a huge contribution of his intellect and sensitivity to others. Sharron Rush and Celia Hughes, who represent accessibility-based organizations John has worked closely with, will arrive in an hour or two.

I am profoundly sad to be losing John and profoundly grateful that there is such big love between us. And our love for one another will always be. I am grateful for Myles, Peter, Mason, Ledia, Wolf, and Melissa sharing this journey. And all of you are with us too in this circle of love and light.

Love, Anna and John

Sad days, but love surrounds

Hi all: It is very early Monday a.m. I didn't sleep much as John is breathing hard. When the nurses move him or do a breathing treatment, he seems in pain. Then I ask them to give him more pain medication and he breathes more quietly. Although I wake up some here, this is the most restful place for me to sleep. During the day, when others are here I can curl up for a nap now and then. This is the hardest experience of my life and yet I am resting in the love that surrounds me. It comes from John, family, you guys, and the Universe in general. And I know John is experiencing it too.

Family is here and many friends have been coming. Yesterday Jim Allan, KC Dignan, Jim Thatcher, Diana Seidel, and Bill Morgan drove from Austin and Melissa Craven flew from San Francisco. Judith Sokolow and George La Salle, who had come on Saturday, were here in the morning and joined Peter, Ledia, Wolf and me for breakfast in the hotel. In various groups, we've gone out for some lovely meals, including interior Mexican food at Hugo's last night. Myles took the day off to rest in his hotel room and read the New York Times. I know he is very sad.

Everyone is sad to see John so sick and not able to communicate with us. But I know that he hears us tell him we love him. There is really nothing to we can do--no food to buy and feed him (he is given nutrition in an IV solution), no cajoling him into taking medicines or drinking water in the way they trained us for safer swallowing (he gets everything by IVs), no conversations (he is sleeping and doesn't speak)--nothing. We can only be---be here with him, hold his warm hands, breathe deeply in his presence, meditate and pray, play healing music and join him on this amazing journey of love.

Sending love to all of you,
Anna and John

Friday, March 21, 2008

Good Friday

Ledia, Mason, Myles, Peter and I have been sitting in John's room, with Ledia and Mason switching out to take care of baby Wolf at Rotary House, as children under 12 are not allowed on this floor. Bill Nemir just arrived this minute from Austin. Mason's girlfriend Melissa plus Allison Orr, Judith Sokolow and George LaSalle will come tomorrow. It has been a peaceful "time out of time" experience to be just hanging out with family and close friends--something we rarely have an opportunity to do. Peter and I brought in two huge foil helium balloons--one a multi-colored butterfly and another a dragonfly to celebrate the official beginning of spring.

John is very quiet and sleeping peacefully. Not much change in his health status except that his pneumonia may be slightly worse than it was yesterday. We feel the room to be full of love from those here and from all of you. Peter, John's brother and bone marrow donor, has written the following about what we are experiencing here:

Hello to all from John’s room at MD Anderson. This is Peter, John’s brother, and I’ve been here since Tuesday night. It’s a return trip for me after being here two weeks ago for John’s diagnostic craniotomy. I’m really grateful to be here with Mason and Ledia and Wolf, with Myles, our father, and of course with Anna, who is the amazing, steady and sure anchor for this journey. There are, of course, other visitors: David Baker from Body Choir came Wednesday afternoon and went back to Austin last night, and Luis, the sitter who Anna hired, is here most of each day. With the various doctors and nurses who stop in, the room is in an almost constant buzz of activity, even if we are all just sitting still. The doctors and nurses are all busy adjusting John’s medications, checking his vitals, taking X-rays, manipulating him in bed to make him as comfortable as possible, and continually responding to any change in his situation or condition that causes concern.

So far today (Friday), John appears more comfortable than yesterday, when he was very uncomfortable at times, moaning quietly, agitated, and working much too hard to simply breathe. We struggled to help him feel better. His incredibly capable and oompetent nurse, Norman, has found that repositioning him on the bed is very helpful. We can, unfortunately, do nothing to ease his labored breathing; his lungs fight for every breath against the pressure of fluid and infection. But he is fiercely determined not to give in, and we all take our cue from that. We can’t tell how much clarity there is in his view of the world around him from inside his battered head, though I am convinced there is a great deal of essential understanding – that he is here fighting for his life and that those who love him are joined with him every step of the way.

Late Thursday afternoon, as John lay focused on his breathing, Anna put on Mavis Staples’ powerful new album, “We’ll Never Turn Back,” and soon we found ourselves singing quietly along with “We Shall Not Be Moved,” a most appropriate and beautiful anthem of defiance. And following that, Anna and David and Luis were dancing to “99½ (Just Won’t Do).” It was a wonderful moment, the sun splashing the room with light and the motion and music sending an insistent message of love, comfort and support to John and to us all.

Shortly after that, though, John went through a terrific bout of coughing, his breathing became deeply difficult as he tried to expel the sludge from his chest. We held him and each other until the moment eased, and he settled back into his more typical, but still quite challenged breathing.

That the intensity of this pitched battle is being repeated room by room and floor by floor across this vast complex is ever present, and it actually bolsters us as we meet neighbors, both patients and caregivers, who are all engaged in the action. The cordial hellos in the hallways of the hospital and the hotel known as Rotary House, where we repair for sleep, for drinks, for exercise, for warm-hearted breakfasts, all remind us that we are not alone, and they help us feel that we are contributing to the succor of others in need. The quiet determination and acceptance of the present condition of a loved one’s life – and our own – is a constant throughout the day. This sensation is at the at the nexus of treatment, awaiting outcomes and accepting the endless series of minute steps along the path, wherever it leads. It is the heartbeat of the place.

Now, on Friday afternoon, we sit in a watchful yet calm state, happy to be with one another and with John, whose breathing struggles have eased, perhaps with stronger drugs, perhaps because his condition is improving. We don’t know what the next stage in this journey will be, and how it will challenge us, but we do know that we are all committed to sharing it and making the most of it. As Anna said a few minutes ago, John’s gift to us as a family is that he is bringing us together, and that, like everything my brother has ever tried to do, is no small accomplishment.

Love, Peter and Anna

Thursday, March 20, 2008

John not talking, breathing difficult, nutrition though IV

Hi sweet ones: It is Thursday morning and we are listening to gentle African music in John's room. Hope Lipnick, close friend and Jewish chaplain here at the hospital, is visiting. Luis, very (sweet and caring sitter from Honduras who comes in every day at 7am and stays most of the day) was just massaging John's neck gently from the side of the bed. I called Jewish Family Services and hired Luis as a private sitter when the hospital informed me that they would only provide a night shift sitter 7pm-7am. Even though I or others are in the room most of the time, Luis and the night sitter attend to John constantly, adjust his position when needed, make sure oxygen is in place, offer wet swabs for his mouth, and handle a variety of maintenance items. Luis offers the added sweetness of massaging John's hands, feet, and neck to make him even more comfortable. With us at the Rotary House and visiting John this week are Peter, Myles, Ledia, Mason, baby Wolf and today David Baker of Wimberley is here too.

John's pneumonia has made his breathing difficult and heart rate very high. Dr. Jones (attending Dr. rotating in after Dr. Andersson was in for 2 weeks) and the team heard a bit of improvement in the right lung over the day before when they listed to his chest. They have established that John had definitely been aspirating food and liquids into his lungs, so they've stopped all food and drink and put him on a clear yellow nutrition formula called TPN that goes into the vein in a normal IV tube. Antibiotics have been adjusted to target the pneumonia better, as they know it is probably mouth-borne bacteria that is causing it.

John is very weak and mostly doesn't talk at all. He mouths words occasionally and sometimes answers questions by gesturing or pointing to where the pain is, etc. He is on a drug to reduce the agitation that he experiences from his brain injury and pain medicine as needed intermittently. Overall, John is weak, sleeps or rests all of the time, and cannot walk or even sit up on his own. The hyperbaric center at Hermann has told Dr. Jones that until John's pneumonia gets better as documented on a follow up CT scan, the treatments need to be suspended as there is a risk of too much pressure and possible rupture of the lungs. Overall, this picture represents a setback for John's health, but we can feel his sweet self more than ever and he continues to radiate love in response to the love coming his way.

We know you all join us in praying and sending positive messages of healing. Thanks so much for every kind of support you are providing. Allison Orr will be visiting on Saturday and all of you are welcome anytime. We are thriving on the emails, calls, and visits, and are using the lovely donations toward living expenses and nursing care "sitter" costs here in Houston. I know that each and every gesture you make is accompanied by a very tender and respectful love for John, and that you want so much for John to feel better and return to the vitality he brings to the world. I can feel this multiplied by a thousand, with each one of you doing so much.

Lots of love,
Anna and John

Monday, March 17, 2008

Worse pneumonia, wedding anniversary & photo from Thurs

Hi all: The photo here was taken Thurs, when Dillon, Diane, Jack, Morgan, Will (Morgan's guide), and Richard visited with us in the hospital lobby. I love how golden retriever Will looks so concerned for Dillon and John.

Just wanted to say a quick hello, and update you that John's pneumonia is worse. They have increased his supplemental oxygen and he is using a clear plastic mask over nose and mouth. He is also in pain and they are trying to diagnose what is wrong with the bladder and/or kidneys Today's hyperbaric treatment was cancelled.

Today is our 24th wedding anniversary and John has given me lots of hugs this morning, even before I mentioned the date. I have to make an editorial comment here that he is such a wonderful man to be married to. The nurses all say, "What a catch!"

Myles, John's dad arrived here last night from Buffalo and John was also blessed with visits from Natacha Poggio, and Mike and Jason, who had done graduate studies with John. Natacha had traveled to SXSW and zipped to Houston to see John. Mason, Ledia, and Wolf are on their way Tuesday.

We are so touched by the amazing Paypal donations that we are receiving from you guys. It will help with expenses here in Houston for lodging and caregivers. We appreciate every single sweet word and kind act you have sent our way. You are like angels holding us up. You are comforting John and providing me strength to stay focused on this journey.

Love, Anna and John

Saturday, March 15, 2008

Going deep into unfamiliar territory

Since our last post a few days ago, we find ourselves on an even more difficult journey. John's speech has gotten even more slurred, coordination of legs and hands more difficult, and brain going through changes that make it hard for him to understand others and be understood himself. On top of that, John has a very painful bladder condition (they think it is a BK virus common to immune-suppressed folks but tests are pending) and he has had to take strong narcotic pain medications after sometimes moaning and shaking in pain. There have been small blood clots passing in the urine. Most of the time, however, the pain medicine is working and he is more comfortable physically. The dilemma for the doctors is to avoid over-medicating his brain--They want to wake up the cells!

Adding to all of that have been some safety issues for John. We had been asking for some "sitters" for John in the room, even while I was there (I am here probably 18-20 hours a day). On Tuesday a.m, I went downstairs for coffee after telling the nurse (one who had been adamant that we need no sitters) that I'd be back in 15 minutes and asking her to make sure to check on him. When I came back 15 minutes later, I found him on the floor, having fallen trying to get to the bathroom. Luckily there were no injuries that showed up in the x-rays and John seemed ok afterwards.

John completed two more hyperbaric treatments for a total of three, after taking 2 days off to have a bronchoscopy and tubes placed in his ears. He is scheduled to have a total of 40-60 treatments, 5 per week, over 8-12 weeks. For as long as we're in Houston, we have hired a person named Luis to accompany him to the hyperbaric treatments; counting the round-trip ambulance ride to Hermann two blocks away and some wait time, the whole treatment process takes up 5 hours each weekday. So far, John has seen no results from the treatments, but we were asked to wait 8 weeks before assessing anything.

John had really enjoyed some wonderful visits this week (and so have I)! On Tuesday, Linda Ferreira-Buckley and Tom Buckley from UT spent the afternoon and evening here, capping it off with taking me to dinner at Prego in Rice Village and getting John take home pasta, chicken marsala, and panna cotta for dessert. Shawn Henry, accessibility colleague John has worked with at many conferences, came here to visit on her way from SXSW and brought the special gift of audio clips from many of John's friends and colleagues who were at the conference. How touching to hear their voices missing and loving John so much!! What a thoughtful, creative gift.

Thursday's visits were amazing as well. Diane Colvard and Jack McKinney brought Dillon for a visit with John in the hospital lobby and, were joined by former UT colleague and Guide Dogs for the Blind boardie Morgan Watkins, his golden retriever guide dog Will, and son Richard who just happened to be visiting the same day! What a beautiful sight to behold--the two dogs curled up together between John and Morgan in arm chairs. (We'll have to share the photos soon!) Also delightful were the loud exclamations from hospital staff members who knew Dillon: "Dillon, it's Dillon!" from bone marrow biopsy technicians, people from the rehab floor, and others who knew Dillon. Diane Colvard has been an amazing angel for Dillon--feeding him gourmet meals that cater to his whims (and he's a bit picky these days), carefully and caringly giving him pain meds (which she has to pick up frequently from the vet and then administer every 4 -8 hours of her life), and staying on the lookout for other health issues.

Sadly, my brother in law's father died Wednesday and Patti and Dennis had to come back, along with my niece Rebecca. It has been great to see them and others in their family and network of Houston friends, some of these being connections from Bellaire High School days long ago. Patti, an RN and staunch advocate for all things John and Anna, happened to be available to join me for a "care conference" meeting the nurses had called for the purpose of coordinating John's care, now that he's been here a while and there are many medical issues involved. After the meeting in which Patti and I spoke up about our need for more resources for John, sitters have magically appeared on all shifts to help with John's care.

Tears come to my eyes as I contemplate the guardian angels who have stepped in and provided special support at just the right time. Thank you Arcadia, Steve and Helen Schoonover, Sharron Rush, Loretta Guarino-Reid, and Kathy Keller.

Sharron asked that I post the following:
Many of you have been asking about how to help John and Anna through this very difficult time. It is especially frustrating for those who are far away and cannot visit. So we have set up the Friendship Fund for anyone who wouldlike to help our friends offset some of their expenses and the loss of income caused by so much time away from work. Here's how you can donate to the Fund through Paypal:
1. Go to
2. Choose the "Send Money" tab
3. When prompted for an email address, use Anna's
IF YOU HAVE A PAYPAL ACCOUNT:you will go through the familiar series of screens. There is an optionto leave a message, please do so with the subject Friendship Fund.IF YOU DO NOT HAVE A PAYPAL ACCOUNT:You may follow the prompts and enter credit card information. At theend of the process, you will then have a Paypal account.
IF YOU DO NOT WISH TO USE PAYPAL:Another option is to send a check directly to Anna at their home address:Anna Carroll405 W. 35th StAustin Tx 78705
Much love to this wonderful circle of friends.

Ditto--Much much love to this wonderful wonderful circle of friends. You are all grounding this big tent. Anna and John

Monday, March 10, 2008

Looks like we'll be in hospital for a while

Hi all: We want to start by thanking my amazing sister Patti and our brother in law Dennis who spent a 3-day weekend here taking care of John, me, and Papa Joe (Dennis' dad) who is in his 90s.

It has been quite a demanding week and I have to admit feeling a bit overwhelmed and distressed with John's neurological symptoms from the radiation injury. Also, tomorrow he will have a bronchoscopy to check on the pneumonia spot they found on the right lung. On Wednesday, he will have tubes placed in his ears--the way they do them for kids--so they can make sure that the pressure in the hyperbaric oxygen chamber doesn't hurt his ears--apparently an issue for some people.

Today was Day 1 of the hyperbaric treatments. It was a very long day, but we were saved by Allison Orr's angelic visit around 1pm and she took over helping John so I could leave at 2pm. John and I had been picked up at 7am by the ambulance to go to Hermann Hospital's hyperbaric medicine department and he was delivered back home at 4pm. Pretty much all day, John was lying in stretcher and we ended up waiting for countless hours between the initial examination and the treatment at 1. The chamber itself is kind of cool looking--in a sort of mad scientist's retro-futuristic way. When the patients enter in their bright green scrubs, it's like they are going on board a submarine, and as the technicians turn up the pressure dials--they speak of going "under" so many feet of pressure. About 10 patients and 2 nurses went into the chamber this afternoon. There are 2 sessions a day--I think we will usually go in time for the 8am treatment. John couldn't describe anything about the feeling inside the chamber. Each of the patients had a large white breathing mask covering their entire head and they all looked like astronauts. Dr. Maus, the head of the unit, is very smart and personable. However, he was far more guarded than Drs. Forman and Andersson in his prediction of what the treatments could achieve for John.

John is still experiencing the neurological problems from before with a bit more confusion added to the mix. He wants and needs me to assist him with day to day living chores like eating, as his ataxia makes it hard to coordinate spoon to mouth. This can and will be worked on via occupational therapy sessions as well as physical therapy for the ataxia in walking. Basically, his walking has gotten more and more difficult so that really you'd have to say that functionally, he does not walk. As I am needing assistance to help John do some of these things, I contacted Jewish Family Services, as recommended by Hope Lipnick. I am looking into hiring someone to spend mornings riding with John for the hyperbaric treatments, so that I can work a bit and do personal errands.

We would really be delighted to see any of you in Houston as the doctors are revising their original plan to have us do a week here, a week as an outpatient at Rotary House, and then to Austin. It now looks like 3 or more weeks here at MD Anderson, as John requires so much rehab. Morgan Watkins plans to come visit on Thursday and Myles Slatin is coming in Sunday.

You are welcome for an hour or a week. If anyone wishes to stay overnight, I have a lovely large room at Rotary House with kitchenette that I never sleep in (just use it for clothes and shower) so you can just use the room anytime. You can email me or call Diane at 512 442-9400 to coordinate days. As you know we are always happy to see you, anytime, in ones, twos, or groups. John loves to see you, but also rests a lot so you'd be hanging out with a book or computer some of the time here. Also I might kidnap you to go out for lunch or dinner.

Thanks for the many months and years of support you have already given us! That will never be forgotten.

Love, Anna and John

Friday, March 07, 2008

Mystery solved: Radiation injury to brain

Loved ones: Dr. Forman came in yesterday afternoon and informed us that he neurology "tissue committee" met yesterday with a crowd of pathologists who specialize in brain pathology and they concluded the same thing Mason and I figured out (via net surfing on phrases we had picked up from the doctors) to be what is going on in John's brain---good brain cells are being damaged by the radiation he had May-June 2006. Dr. Forman calls it "radiation injury" and from what I have read, it is not good. It typically occurs 6-24 months after whole brain radiation and risks are highest with folks under 2 or over 50 and/or people who have had chemotherapy after the radiation. John had a lot of chemotherapy after that timeframe, both through the spinal fluid and through the bloodstream. What is not typical is that it usually occurs with people who have had more than double the amount of radiation John had. John had 24 rads and the threshold number is 50 rads for higher risk.

Anyway this is what we are dealing with. Symptoms are ataxia (lack of coordination), urinary incontinence, and many other brain-related symptoms John has been experiencing.

Dr. Forman was very upbeat and feels strongly that an 8-week program of hyperbaric chamber oxygen treatments has a good chance of reversing some of the symptoms and arresting the process. Also they will prescribe 2 oral medications, one a blood thinner (as the blood vessels are being damaged) and another one that acts as an extreme antioxident (as the injury unleashes massive amounts of "free radicals"). Basically all of the treatments are like anti-aging treatments. The doctor even recommended that John eat lots of fresh fruits and vegetables and take alpha lipoic acid and N-acetyl carnitine. Dr. Forman has done research on the value of the oxygen treatments for radiation injury and he has had good results with it. He also said there is much skepticism about it as well.

Today Dr. Andersson and his team will visit us and adjust the other medications to eliminate unneeded infection medications for fungus infections, viruses, etc., prescribe the new medicines, and arrange the hyperbaric treatments which will start out with half-day trips from here to nearby Hermann Hospital Monday or so (and continue later in Austin). Also John had a CT scan yesterday of the chest and lungs so they will give us an update on that. I think he has already improved again on the pneumonia but will have to finish out this round of vancomycin. Dr. A's plan is to keep us around here for another week or two and then continue treatments in Austin.

You have supported us sooooo much and we thank you for every single kind word and deed you have done. Two examples from yesterday were 1) a package of 20 or more beautiful cards and written messages Katie Raver arranged from folks we knew (and some we didn't know yet) from their NLP course and 2) tortilla soup for John brought by Hope Lipnick.

We will continue need a lot of support and good vibes plus paid help, as John is still pretty much unable to walk or do things on his own and it will be unsafe for me to leave him alone in the house, at least at first. I am planning to return to work from Houston and Austin, starting with a twice postponed training in Austin on March 17-19. More details about our schedule as it emerges. And I will be asking some of you to help me plan for the next few months.

One thing for sure is that we wish to celebrate our wedding anniversary (March 17) and may postpone a party until we get back to Austin. John is happy that my sister Patti and brother in law Dennis are coming from Albany tonight and will visit here til Monday. Also John's father Myles will be visiting next week. Andrew Bost has been in Houston to work lately and visited us Wednesday, took me to lunch yesterday, and will stay with John this afternoon. Allison Orr is planning to visit and stay with John awhile on Monday.

I am sad, happy to be with John, and grateful for the love that surrounds us. More later.
Love, Anna

Wednesday, March 05, 2008

Where we are five days after surgery

Hi all: We are back on the bone marrow floor, in Green 1174, under the care of Dr. Andersson and his team (plus many consulting doctors). With the surgery, pneumonia, six or more medical disciplines involved, and the complexity of John's neurological symptoms, we've been constantly in motion since our last post. My part has been talking with doctors and nurses, helping them with John's day to day care, getting and heating foods that are appropriately "soft"to please the swallowing therapists, feeding him, asking nurses for things he needs, adding thickener to his water, etc. Mason has helped a lot with this too from last Wednesday to this Monday.I've really been wanting to write you guys and am so glad to do it now.

To explain what is going on, I'll chunk down the phases involved in John's treatment since the surgery and going forward--and give a status report on each. Basically the somewhat overlapping stages I see are:
I. Recovering from brain surgery and leftover pneumonia
II. Waiting for pathology report and diagnosis
III. Treatment based on II
IV. Rehabilitation to return walking, talking, short term memory, and swallowing functions

Phase I Recovering: We're still in the middle of this. Today right side of John's face near surgery area is visibly swollen. Max, our very smart Russian nurse doesn't know how much of this is normal and how much isn't. A resident from neurosurgery popped in this a.m. very quickly but we didn't get a chance to have a conversation about puffiness and pain in the area of the surgery, partly because it wasn't as evident then. Max reccommends we discuss it with Dr. Forman, as he is the neurologist. I will phone Mary Miller, his efficient nurse, and she is likely to send Dr. Forman over. In addition to the surgery pain, John was up all night with coughing. Pneumonia is better but not completely gone. Andersson and team put him back on vancomycin for the pneumonia. Meanwhile John still has severe balance problems, slurred speech, and short term memory problems. I think the swallowing is better than it was last week. John did pretty well right after the surgery and over the weekend and hugely enjoyed the visits of (in order of visits) Mason Carroll, Peter Slatin, Dana Fris-Hansen, Mark Holzbach, Marianna Adler and Rick, Bill Nemir and Rino Pizzi! For me, these visits were a lifesaver!! Peter and Mason were with me in the waiting room during the long surgery on Friday and the hours and days afterward.

Phase II Waiting for diagnosis: Today Dr. Andersson received the pathology report which he briefly discussed with us. Since it's all about the brain, he wishes to discuss the biopsy findings with Dr. Forman as well, as they are somewhat confusing, and he will send in Dr. Forman. Basically the pathology report says that:
-There is no lymphoma or leukemia
-There is evidence of past bleeding
-There is evidence of necrotic tissue (from the combination of radiation and steroids or from one of these)
-No specific fungal, viral or bacterial infection was identified

I will update you guys on interpretations of these items and any more I am missing in the next day or two after I have talked with Dr. Forman. I am personally feeling overwhelmed by the nebulousness of what we have learned so far and I think Dr. Andersson is too. My sister Patti and her husband Dennis will be here this weekend visiting with us.

Phase III Treatment: (This is my surmisal:) Will be based on the doctors' understanding of II. Mason and I have heard of and read about treatments for necrosis in the brain (from whole brain radiation) using a hyperbaric chamber and also using steroids. Use of steroids is a disturbing as I believe it was the steroids that interacted badly with the radiation to cause these problems. We didn't seem to have the problems til well after steroids were on board.

Phase IV Rehabilitation: Will be a huge and necessary component, probably starting here and continuing in Austin. Will involve occupational, physical, speech, swallowing, and other kinds of therapies, up through use of additional adaptive technologies if necessary to do his job if right hand is unable to get full function re: typing.

What makes this whole long process easier is knowing you are out there--through your visits, emails, calls, and so many many acts of kindness. John has said that what he fears most is being cut off from people. What I fear the most is the exact same thing. It's hard being physically away from you, living on this strange planet--as positive and smart as the inhabitants are.

Sending more big big hugs your way
Love, Anna and John

Saturday, March 01, 2008

John still ok and I fell asleep instead of blogging

Hi everyone: Thanks to so many of you for the amazing emails and calls after the last update. You guys have encouraged us all the way!

Around 7pm, they moved John from the recovery room into Room 802 where he is on constant monitoring of his vital signs and he is being watched by nurse one on one. His nurse is Raja and knew her from the rehab wing on the other side of the floor. Peter and Mason and I went there after dinner and saw that he was still a bit drowsy. His blood pressure had been on the high and they placed him on a drip blood pressure reduction medicine in his IV.

After seeing that John was in good hands for the night, I opted to sleep in the hotel room instead of the chair-bed in Room 802. I came to the hotel room and immediately fell asleep. Peter and John went to the hotel bar (which closes at 10pm). I had planned to write a blogpost but that didn't happen til now. I just phoned Raja and she said John's blood pressure was a lot better and he had drunk 3 small bottles of water. I will go back to sleep for a few more hours and go back to John's room early.

Love, Anna