John out of surgery

Very quick note: John's surgery was finished at 3:30 and he is in the recovery room. They started the surgery at 8:30am and there were some MRI scans along the way. We are about to visit John in the recovery room. He tolerated the surgery well and they got a piece of "abnormal" tissue. Dr. Prabhu said the tissue was not any kind of cancer tumor and didn't appear to be an active infection, but it would be examined by pathologists over the next week. Will post more tonight after I see him and his situation in the neurosurgery special rooms on the 8th floor. I'll be able to stay in his room tonight. xoxox, AnnaVer

John having surgery in "BrainSUITE" now

Hi all: I left John with the anaesthesiologist and two nurses this morning at 7:15. All three were friendly and re-assuring. They seemed to know a lot about John, his medical history and even his profession--as they called him Professor Slatin right away. John was alternately relaxed and talking nervously, definitely ready to get the surgery started. We were both awake a lot last night--John anxious to tell me about some ideas he was having about accessibility and cancer treatment, accessibility and the arts, his role in showing people how to implement the new accessibility guidelines, and other topics I couldn't quite understand because of his slurred speech and my sleepiness in the fold-out chair-bed (less comfortable than the Murphy beds on the G11 bone marrow unit). Also John's brain condition has affected his short-term memory. He kept asking me when we needed to wake up, when the surgery was, etc. Dr. Forman has told me that lesions are in an area that definitely affects short-term memory.

Dr. Prabhu explained on his visits over the last 2 days that they would be doing the surgery in a soecial area called the "BrainSUITE" in order to use the constant MRI access to make the surgery the most precise possible. If you don't mind a commercial-sounding blurb about it, check out this link http://www.mdanderson.org/care_centers/brainspinal/dIndex.cfm?pn=558EB76D-4550-40ED-A492EA6CB26FAC13 or google "MD Anderson, brainsuite." A nurse told us that the brain suite was a passion of Dr. Prabhu's and he had pioneered in the use of it, if not the configuration/design of it.

We were delighted to see Peter Slatin, who arrived at Rotary House around 7 last night. Mason walked him and German shepherd guide dog Joy to join John, me, and lovely nurse/sitter Ummumi. The three of us were rocking out to Mavis Staples' latest gospel-y CD, with John moving arms and torso to the music (BTW, x-ray of hip was negative re: fall and soreness is being controlled by pain meds). Then Peter, Mason and I had some sauvignon blanc and peanuts while we visited with John.

Mason was a doll to come help me pack the entire room at 5am this morning, as we had to vacate room (so that John could be transferred to a transitional room tonight--either surgery ICU or the special neurosurgery beds that are located on the same floor we were on). By week 3, we had carted in quite a lot of technology, CDs, clothes, a new lamp, dishes, reading material and other stuff. Mason schlepped it all back to the hotel room at Rotary House. To do this, Mason had to arise at 4:45 a.m. while still a bit lagged from California time. And on Wednesday night Mason had stayed in John's room and I actually slept in the Rotary House bed for the first time on this entire stay. I use the room as a closet with a bathtub. A huge bright spot in our room, however, was the gigantic basket of fruits, cheeses, snacks, chocolate, and many other goodies--including some special things for John like strawberry guava nectar--from Tanya Browning and J Mike. Wow!!! Thanks.

I am currently in the surgery waiting area, which is huge. It's a lot like a first class airport lounge with about 8 interconnected rooms, lounge chairs, tables, phones, and 4 conference rooms for updates with nurses and doctors. Mason is still napping. Peter will come over after he feeds Joy and eats breakfast.

Your calls, emails, and support have been wonderful. I don't know what to think or how to feel. There is so much I don't know. I am trusting that all is well and all is for the best. Doctors here are great and trying their very best. I am blessed to have such a wonderul husband and to be surrounded by so much love on all sides. I will write another post this evening.

Love, Anna

Brain biopsy Friday morning

Hi there loved ones: So much and so little has happened in the last few days. So much waiting for medicines to work--now around 6 weeks that John has taken anti-fungals and other brain infection meds. So much time back in the hospital recovering from the pneumonia and experiencing same plus additional neurological problems--like swallowing problems that risk John aspirating food into lungs (a possible cause of the pneumonia in the first place). John's balance issues were worse yesterday and the day before, and in fact he had a fall in the hospital room around 5pm yesterday after standing up in front of his chair. Will recieve x-rays today of hip area that hurts (they did x-rays immediately after the fall--but of the ribcage not hip!:)

So little is known about what is causing all of this havoc in the brain and no further clues have emerged from the lumbar puncture or the last MRI. So much discussion has occurred between doctors, and between doctors and us--and the only approach that makes any sense at this stage is to do the brain surgery for diagnostic purposes. Dr. Forman (neurologist), Dr. Champlin (head of bone marrow transplant department and attending doctor on BMT rotation now after Dr. Hosing is off), Dr. Guo (rehabilitation doctor on floor where we are and specialist in therapies for neurological issues), and Dr. Prabhu (neurosurgeon) and other neurosurgeons in the department all agree that this is needed. They have discussed the risks further, and at this stage, the biggest risk is that they may not get tissue that shows anything, as it could be an infection that we are already treating. But as Dr. Champlin pointed out, even this tells us something--that it's not leukemia or lymphoma or another cancer, each of which would be treated in a completely different manner. If it is any kind of infection, and we can determine what it is, medicines can target it more specifically.

We'll get more details in our discussion with Dr. Prabhu later this morning, but for now, the surgery is planned for Friday morning. It will take about 5 hours due to the fact that tissue will be tested during the surgery process to see if they have gotten an adequate sample.

With so much that has been missing, John and I have continously felt the wealth of your love and caring, and we will draw on that more and more in the next few days and weeks. Ledia, Paul, and baby Wolf delighted us with their visit from San Francisco from Friday til Tuesday. Wonderful Austin friends and John's UT colleagues Liz Cullingford and Evan Carton spent all day Saturday with John and wheeled him outdoors to lunch and for several hours in the garden at Rotary House. Hope Lipnick (Jewish chaplain at MDA and now fun friend) and her caring team of volunteers have been regular presences wherever we are in this hospital or clinic. My brother Rick and sister in law Evelyn joined us Saturday night. Plus there have been many very caring communications from folks like Penny Freppon (whom we met at Rotary House), Steve Schoonover, close friend and colleague--who happens to be a medical doctor and helpful adviser/sounding board, Rose Jackson (mother of sweet Frank Jackson). and my sister Patti. Mason is flying here tonight, and Peter Slatin (John's brother) will be here for the weekend.

Big hugs all around,
Anna

Dillon's birthday, pneumonia, brain surgery, & "Care Communities" team

Hi cheering squad: Yesterday was Dillon's 11th birthday and he celebrated in the lobby of the hospital with John, Diane Colvard (the angel who brought him from Austin and his primary caregiver while we are in Houston), Peg Syverson visiting from Austin, and me. It was the happiest few hours in John's whole day--I could tell by his non-stop smile!

Today was a busy day, with lots of doctors and treatments. Dr. Forman came in early this a.m. and did the lumbar puncture to get spinal fluid. Dr. Jack Fu, cheerful rehab doctor (from the 8th floor unit we'll be moved into as soon as they have a room), came to chat for a long time about strategies they use for nerve issues like John has. The bone marrow team came by and declared the pneumonia to be fully treated now, with no more vancomycin or other pneumonia infusions needed. However, we will stay on this floor waiting for a rehab room and be visited a lot by neurology and rehab people. Speech pathologists came in and observed John swallowing. They are concerned John is choking a bit on thin liquids like water, as he starts coughing too much, so they plan a barium study of his swallowing tomorrow. At the present moment, John is eating a cold container of cinnamon maple applesauce from Whole Foods--to get it down before midnight when he is not to have food or liquids, in preparation for the barium study. Curtis, wonderful massage therapist from MD Anderson's Place of Wellness, came by to give John a short massage we had signed up for; but since John was being examined by doctors, I got to have the massage in my chair while we all listened to doctors:) John has so far had 2 massages from Place of Wellness during this stay and there will be more.

John is feeling better from the pneumonia and blood counts are better. However, neurological symptoms continue and these affect pretty much his whole life--like talking, walking, using technology, and to a smaller extent, eating and peeing. He has been walking regularly with physical therapy people, me, and/or nurses and he goes at a good clip but balance is off and they call this ataxia (lack of coordination due to nervous system problems).

Dr. Forman is growing impatient about John having to suffer these neurological problems, and he is very concerned that we still don't know the cause and therefore may not be treating it. When Dr. Forman came back around 4pm, he had checked lab results and seen a couple of preliminary results, including protein level from this sample and the last couple spinal fluid samples to be trending higher (although not all that high--just a baby clue)--indicating that something is not right. Also another mini test showed some elevation that could indicate a cancer. These alone are not strong results but we will hear more tomorrow as they complete more of the analysis. Dr. Forman is again suggesting that next week we should start considering the brain biopsy. When we asked about the risk issues, he said that the neurosurgons always re-evaluate risks based on the emerging situation. John and I were both a little down about all of this, but plan to listen to all of the details very carefully tomorrow and next week. Tonight we distraced ourselves by watching the Clinton-Obama debate, which we enjoyed.

We received a nice call from an organization in Austin called Care Communities (formerly Interfaith Alliance). Sharron Rush had contacted them on behalf of John, as they form teams to support cancer or AIDS patients in their homes. If we can sign up people to join the other volunteers they have available, we may receive some great help in our home when we return to Austin. The help is like shopping, caring for a pet, gardening, cooking, talking to person being cared for, and/or other activities that people want to offer and John wants to receive. I love that they build a team to do this and the team members communicate closely to make things happen. The team can grow as needed. Anyway, their monthly training is this Sunday, the 24th from 1:30-4pm and if you are willing to do this for John, we would be very very grateful. It sounds to me to be a very fun organization. Here is website link, more information, and who to call:
http://www.interfaithcarealliance.org/index.htm

We continue to appreciate the blessings you bring everyday. For instance, there's a big bouquet of yellow get-well ballons beside my computer screen here in G1160. They are from John's UMichigan dorm-mate, Ken Portnoy (now a resident of the DC area). Also a very special thanks to Diane. I spent some time with her and Dillon this morning in the hotel, and she spends loads of time sweetly cajoling him to eat more, tries different foods, and gives him his pain shots regularly.

Love, Anna and John

Today is a better day!

Wednesday 2/20. Thanks for so many encouraging emails and calls! At 8:00 pm we decided to do something fun to pick up our spirits, so we asked permission for John get off his IVs for a bit, so that I could wheel him over to Rotary House for dinner. It was lots of fun eating in the bar there, splitting a cheeseburger (plus John's onion rings and my salad) while watching the favorable election returns from Wisconsin and Hawaii.

Today we prepared a list of questions for the bone marrow team to answer and felt very positively about the answers. They ended up taking John down from the immune suppressants (to allow his own, i.e. Peter's to work), exchanged the anti-fungal infusion for a pill that has better brain absorption, and ordered a follow-up x-ray, which may lead to taking him off of some of the pneumonia IVs. They explained that a fungal infection in the brain may really really be slow to respond as the drugs penetrate slowly across the blood brain barrier and that as long as the MRI showed a "stable" result, we should wait for these to work. They really don't want to do risky surgery or start something like radiation. Radiation would be for leukemia and Dr. Champlin reiterated what Drs. Andersson and Forman had told us (but we continually forget) that if it were leukemia, some cells would have, by now, dumped into one of the many spinal taps or bone marrow biopsies, or been seen via the blood indicators. There has never been evidence of this. They do keep monitoring for leukemia, including a spinal tap tomorrow by Dr. Forman. So we feel a bit more focused, and have a positive attitude about moving to the Rehabilitation floor (8th) today or tomorrow for more work with walking and speech, along with same doctor's visiting.

We were comforted hugely by the visits of old friend Steve Ausbury and his lovely girlfriend Rachel Sokolow (amazingly with the same name as Judith Sokolow's lovely daughter) from New York. My brother Rick Rogers stayed all afternoon Monday and his calm patience with all that we were going through helped a lot too. Then our brother in law Dennis Frank came this morning and brought breakfast treats. Diane Colvard and DILLON and Peg Syverson are all visiting today and tonight!!! What a lot to look forward to!

Lots of love to all,
Anna and John

MRI results and being terrified by remaining in limbo.....

This is a short post, as the energy is drained from both of us. Dr. Forman came over around 5:30 p.m. to tell us the results of this morning's MRI with anaesthesia. (By the way, they did the MRI planned for Friday this a.m. because the slot opened up when someone else cancelled. This MRI was of the brain, for the purpose of comparing it to the earlier MRIs of the brain.) Dr. told us that here has been no change since the beginning of all of the medicines for infections. It's no better and no worse. Just continued "limbo" as he said.

What this means is that we should wait longer to see if the medications make a difference. Meanwhile John is exhausted, has the same speech and balance symptoms, and has some stomach upsets, partly from the massive anti-infection medicines for brain and pneumonia. A summary of what we know are next steps:

-Lumbar puncture (spinal tap) tomorrow or Thursday to see if leukemia,TB, meningitis, or other evil things appear (we've had many of these to date--all negative)
-More medicines for pneumonia until they take another chest x-ray and see it clear
-More medicines for brain until they see resolution or see enhancement (therefore lack of resolution) of brain "lesions" (shadowy places)
-Being moved to rehabilitation floor for preparation for home health care and rehab
-Future appointments for future scans and lumbar punctures, and future treatments that could include risky brain surgery, radiation, and other treatments if anti-infection meds don't clear it
-Rehabilitation here and in Austin for speech, walking, and functioning as normally as possible

We are going to have to hire some people to help us at home, take John to a lot of therapies, and call on you Austin supporters to help us when we return anytime, we guess, between 3-7 days.

Right now we are feeling down, overwhelmed, and sorry for ourselves. I am feeling that John has already been through too much. And John feels that I have already been through too much. We are sure we will be more resourceful soon. John says he is already annoyed with himself for drawing the worst possible conclusions, because there is no reason for not drawing the best possible conclusions.

We can still feel your love and support for us and believe that all of the doctors are doing their very best for John.

Love, John and Anna

Sunday morning

Happy Sunday all--Both of us wish we could go to dance and then have a nice brunch like we usually do on Sunday--Perhaps we can have a modified version--At least listening to fun music on our boombox and eating goodies I can bring from La Madeleine in Rice Village. We'll see how John's stomach feels later. He's has some stomach problems--perhaps from antibiotics, perhaps from something else.

The photo on the right includes Jim Allan and Dillon, who along with Diane Colvard and Jack McKinney came to visit on Friday. Not showing in the picture are Diane, Jack, nurse-photographer Josh, and John's IV pole. With doctors' permission, we all got to hang out together in the lobby of this hospital, an area called "The Fountain," from 1:30 til almost 5pm. We ran into Dr. Forman's fellow and resident, who had been on their way to our room, and they checked John out in the lobby. I think everyone had a great time and Dillon seemed to love alternately snoozing and watching all the people come and go. Josh and Jim even bundled John up with blankets in his wheelchair and took him outside and around the building. He loved the fresh air. John sat on the floor with his hand on Dillon for just about the entire 3+ hours.

Back in our room, we've seen doctors and John received a chest x-ray. The x-ray looked very similar to the one they took when John came to the emergency room on Tuesday the 5th. This means they are keeping him on all of the antibiotics to continue treating the pneumonia. Dr. Hosing doesn't seem particularly disturbed with this; she said it often takes a while to clear the pneumonia, but I am asking her and the bone marrow team if they can reduce one or both of the immune suppressants John is still on (Cellcept and Prograf) to allow more of Peter's immune cells to fight the infection. There is no formulaic answer, apparently, to how long they keep bone marrow recipients who have had graft-vs-host disease (GVHD) on the immune suppressants. In John's case, they are acting "conservatively" as they would hate to unleash another round of GVHD--requiring mega immune-suppressing steroids--in the middle of the pneumonia and alleged brain infection. On the other hand, if they don't get the progress they want, they will reduce the immune suppressants. So it's all very tricky timing, a combination of science, intuition, and guesswork--a dance I suppose. John is still coughing, though looser, and takes oxygen off and on, as his "room air" oxygenation sometimes drops below 93% where they would like it. He feels a bit tired, but in pretty good spirits for all that he has gone through.

On the head front, facial muscles seem more normal, but not totally resolved. The fluid drained from the ear seem to be clear and not infected. Speech seems to be less slurred sometimes but then other times, the same--hard to understand. A speech therapist has come twice to help him speak more slowly and "over articulate." Honestly, there have been so many ups and downs with these symptoms, I have lost my ability to discern when things are a bit better, worse, or the same. Same with doctors and fellows and medical students who come in teams to visit John--they ask one another whether the symptom is better or not. MRI of the brain with anaesthesia for John--so that he doesn't move--is scheduled for Friday. They want to be able to precisely compare the pictures with the earlier MRIs in order to get a trend--lesions reducing, same, or enhancing? Our guess is that they are same or reducing and hope is that they are reducing.

With continued infusions plus physical, occupational and speech therapy, I would imagine we will be in the hospital until Saturday or longer. Your visits, messages, and calls are feeding John's and my spirits and bringing us up from the low points. Yesterday dancing friend Bonnie Lambourn of Houston visited. Today Mark Van Gelder and Kimbah of Austin will stop by. Tomorrow Steve Ausbury from NY and fiance Rachel are coming to see John on way to Austin. Our brother in law, Dennis Frank, is here from Albany to see ailing father, and plans to stop in. Ledia, Paul, and Wolf had to postpone their trip from SF because Wolf and Paul had fluish colds, but they are planning to come after everyone's well.

We love you and thank you for all of your support.
Anna and John

MRI results--the good news and the inconclusive news

Hi all: Sorry to shower you with so many emails today. Part of the reason for doing this update today instead of tomorrow is to inform our kinfolk--like Myles and Peter and Mason and Ledia and Marge and Patti, etc.--who are awaiting MRI results from this a.m.'s 2-hour MRI of John's neck and upper spine, and some imaging of the head.

Starting with John himself--he's walked around twice today with physical therapy people and is laughing, joking, and responding like his normal self, with some slurred speech and some pain in the neck. Cough is loose and he's off oxygen.

Dr. Forman came in around 4pm to tell us that:
-Neck and spine MRIs looked fine and John's neck pains on the right side did not appear to be caused by any "bad stuff" like cancer or infection. Could be some long-term problems like people have with back aches.
-John has a raging "mastoiditis"--sinus fluid/infection behind the ear and the ENT specialists plan to drain it tomorrow a.m. The built up fluid is pressing against the facial nerve/muscles on the right side and should resolve soon after this!!
-The brain MRIs couldn't be read very well because John was moving or coughing during that phase and they'll need to re-do the brain MRI next week under anaesthesia. However, they saw enough of it to note that it doesn't seem worse than before (and maybe not better either--not sure).
-Monday or so they will do a spinal tap to test fluid and mid-week another MRI

Dr. Ghide and other infectious disease doc said:
-So far the bronchoscopy is negative for bacterial or viral infections, perhaps because he had already been taking antibiotics and perhaps because it's a fungal infection or other cause of the pneumonia that hasn't grown in culture or been otherwise identified
-They plan to switch John off the ambisome and onto an oral anti-fungal

Dr. Hosing (leader of bone marrow team on service for Dr. Andersson) said:
-They will do repeat chest X-ray tomorrow or so and repeat CT of chest next week and if pneumonia is clear, he can go off some of these strong antibiotics
-He is allowed to go downstairs and see Dillon tomorrow afternoon!!

Yes, Diane and Jack are bringing Dillon to see us!!! And guess what else!!!!!!--Ledia and Paul and 9-month old Wolf (aka "Louie Crackers") are visiting from late Sat night through Tues a.m. --And Jim Allan and Peg Syverson are each planning trips here over the next few days--(and I probably forget a few more(

More soon....Love, Anna and John

Reposting Picture

One of the previous pictures posted is way too small and it doesn't do justice to John and Jim Thatcher! This was taken while Jim was reading the Lance Armstrong Foundation Manifesto to John. Glenda Sims is the wonderful photographer who captured this beautiful moment! Thank you to both of you for all your love and kindness! Anna

Sharing Pictures!!!

Hello dear friends,

I am posting the promised pictures I wish to share with you of both John and Dillon! Love to all of you! Anna

Valentine's day update & Lance Armstrong manifesto

Happy Valentine's Day everyone--John certainly feels the love that comes from all of you. And so do I. Thank you. He would like me to tell you about three amazing valentine's gifts before we get back to the blow by blow here at the hospital.

On Tuesday, Jim Thatcher and Glenda Sims came here and spent the day hanging out with John--joking and talking shop, and he found it delightful. Sharron Rush had initiated the following proclamation from the Lance Armstrong Foundation. Jim read it to him (photo to follow in separate post I'll need help to attach) and Glenda hung the poster on our hospital room wall. As Sharron said, "The Manifesto was signed by dozens of the amazing people who work at the Lance Armstrong Foundation."

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength.
Knowledge is power.
Attitude is everything.
This is the Lance Armstrong Foundation.
We kick in the moment you're diagnosed.We help you accept the tears. Acknowledge the rage.We believe in your right to live without pain.We believe in information. Not pity.And in straight, open talk about cancer.With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.This is no time to pull punches.You're in the fight of your life.We're about the hard stuff.Like finding the nerve to ask for a second opinion.And a third, or a fourth, if that's what it takes.We're about getting smart about clinical trials.And if it comes to it, being in control of how your life ends.It's your life. You will have it your way.We're about the practical stuff.Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.It's knowing your rights.It's your life.Take no prisoners.We're about the fight.We're your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.And we know the fight never ends.Cancer may leave your body, but it never leaves your life.This is the Lance Armstrong Foundation.Founded and inspired by one of the toughest cancer survivors on the planet.LIVESTRONG

Two other amazing gifts--one, an intense, pink-toned, compassionate, gorgeous painting of John by Christine Gilbert that she made for an Austin art show opening today--And the other, wonderful photos of Dillon who is living with Diane Colvard and Jack McKinney. With Diane's help later today I will send you the photo of Jim giving John the manifesto, a photo of the pink portrait, and one of the photos of Dillon.

Re: John's health and life at the hospital: This week has been great and frustrating and scary and OK and boring and still full of mystery. I will list some of the things that have happened and are evolving:
-John's pneumonia apears to be way better--oxygenation is better and cough looser
-Speech is still slurred quite a bit
-John is very alert, answers questions readily, and cracks a lot of jokes!
-The muscles in the right side of the face appears weaker than left (this is consistent with right arm and right leg weaker). Dr. F said that the lesions in the brain appeared on other MRIs to be very near facial nerve affecting muscles
-We learned that fungal or any other matter growing or dying in the brain can create a "stroke-like" effect
-John has had a lot of pain on the right side of his neck and been given various pain medications for it (including morphine), sometimes to no avail-- and then sometimes it's better
-MRIs of lower face, neck and spine will be done today
-No results yet from bronchoscopy--they will be culturing things for 8 weeks but some results should be available soon
-EEG--brain waves were totally normal
-Sinus infection has created pressure on right ear
-Blood pressures are more normal now than they've been 9 months or so
-Postural hypotension (plummeting blood pressures upon standing) is better
-John is weak when walking and hasn't been allowed to walk much for fear he will fall
-He did take a walk yesterday with physical therapist
-He will be walking regularly with PT person
-Spinal tap scheduled for Monday never happened and MRI scheduled for Tuesday never happened--all of these things were delayed, scheduling fumbled, etc. We have been sitting around waiting for these tests, and in some cases, doctors' visits, etc. and it's been quite frustrating
-Neurology team seems to be now very focused on seeing what's going on with the facial muscle issue
-Dr. Forman was very attentive in calling me on my cellphone last night after I emailed him with John's symptoms. I walked into nurse's station area with speakerphone on and we could all discuss the situation.
-Dr. F is a very compassionate doctor and asked me to give John a special hug and kiss for Valentine's Day!

And to you, pass along hugs and kisses from us.
Love, Anna and John

Sunday afternoon

Hi there: It is Sunday, 2:37 pm and John just finished having a breathing treatment. A respiratory therapist comes by about 4 times a day and places a clear plastic mask over his nose and mouth. Running through the mask is a warm cloudy mist of a medicine called xopenex (mixed with ipratropium bromide) that opens the bronchial passages. It lasts for about 7 minutes. Mason and Melissa and I brought John some Japanese rice noodles in a broth and he is now sipping the broth from a coffee cup. But not very much.

John's appetite has been pretty low over the last few days. One explanation given by Dr. Hosing and her team is that he has been on several strong antibiotics for the pneumonia on top of the 6 medicines, including ambisome, that he is taking for the mystery brain lesions. He has also had some lower GI problems, again probably due to the mega doses of medicines. The pneumonia has clinically improved (i.e. his oxygenation is normal now and the cough is looser) even though the CT scan shows bi-laterial (double) pneumonia and they want to follow up with a bronchoscopy to look at the lung fluid (routine procedure in transplant patients). Another symptom is neck pain, somewhat solved with Darvon. Although they can give him narcotics, they prefer to keep him alert, with the brain problems still unsolved.

The best thing about this weekend has been the wonderful visits we received by loving friends and family who have amused John and picked up his spirits. On Friday, dear friends Marianna Adler and Sue Heinzelman (John has known UT colleague Sue for over 30 years and the mult-talented Marianna for around 20) came from Austin and spent the day at the hospital--including meeting all of the doctors--and then took me out to dinner. Mary Alma Welch, a smart, nice, and dog-loving PA and friend stopped by when Sue, Marianna, Mason and I were in the room. We were having a lively chat about Sue's and Mary Alma's dogs when Dr. Forman strode in wearing a larger than usual yellow-with-paisley bowtie and his usually large personality. The six of us created a party-like atmosphere. Later Friday evening Mason's wonderful girlfriend Melissa Craven flew in from San Francisco and has been spending the weekend with us here. She and Mason will be here until they leave to go back to SF Monday evening. On Saturday, we received the gift of a visit from Phil Cherner, a close UMichigan buddy John has known for over 35 years. Phil flew from Denver that day just to visit with John. Amazing.

Another good thing is John's nurse 7am-7pm from Thurs-Tues. Norman, a former English teacher is a world traveler, fan of folk and classical music, and knew all of the details we needed about some Edgar Alan Poe short stories Melissa is considering for her storytelling assignment in graduate school. Norman is very sweet, calm, and respectful with John and takes great care of him.

The hardest things happening remain what we don't know. And John does not really seem a lot better. Maybe not worse, but still having walking and talking problems and some confusion. Thankfully no hallucinations, and no super-low blood pressures or postural hypotensions. The mobility problems seem to be the balance and coordination issues that are related to the cerebellum area of the brain. A few things I've picked up:
-If the problems are caused by a fungal infection, it could take 6-8 weeks to clear in the brain, from when he first started the ambisome
-As infection or cancerous tissue in the brain is clearing/dying, "necrotic tissue" can form and sort of clog up so that the patient may experience worse symptoms before they get better
-The diagnostic brain surgery idea was fully explored and is now off the table and not considered an option by any of the doctors we are seeing here.

What's for tomorrow? 3 tests: 1) Dr. F will do a lumbar puncture (spinal tap) here in the room to gather more spinal fluid for many kinds of lab studies, including some new ideas cooked up by the infectious diseases people. Dr. F has a great touch and doesn't hurt John with these. (I was a bit worried, however, last time he did a puncture on John while his sweet but politcally right wing nurse began chatting about her husband's anti-Hillary views, etc. Before we got into her view of Obama, I guided the discussion elsewhere. Even Dr. F commented after she walked out of the room that he disagreed with her views completely:) 2) bronchoscopy to check out the fluid in the lungs and 3) EEG to look at brain waves. Some results from 1 and 2 and all of the results from 3 will be available soon afterwards, while the remaining conclusions from 1 and 2 will involve up to a week more.

Thank you to so many who have been sending wonderful emails. I read them out loud to John and we consider ourselves so very very fortunate to be held in so much love.

Love,
Anna and John

Notes but no more clues....

Hi there: It is Friday morning and I am sitting in a large atrium called "The Park" below John's new room on G11, the bone marrow transplant floor. I am drinking coffee and deciding that I should update you guys on what is and isn't happening. I can summarize by saying that we still don't know very much about what is causing John's walking and talking problems, but there are many doctors trying to figure it out.

Last night we moved from P(Purple)602 to G (Green)1160 near the F elevator. This room is next door to the room we were in about a month ago. Patient Transportation brought John into the new room in a large cart that is meant for carrying a patient plus their belongings. It looks like a big sleigh. John was smiling and looked a little Christmasy in the front of the sleigh in his red knit shirt and red plaid dance pants. Mason and I came behind with multiple computers and other bags. This room is bigger and nicer (more room for 3 computers, 3 phones, speakers, sound systems, etc.:) and it has a Murphy bed that we keep folded down as a sofa. It felt familiar to come back to the floor where we know so many of the staff.

We saw doctors yesterday. Dr. Forman and several students and ''fellows" stopped by early to say that the new MRI looks similar to the last one about 10 days ago, not better and not worse, and therefore inconclusive. Dr. Forman was very apologetic about not seeing us the day before, and I learned that he had actually come by--right after he had told the nurse he couldn't come and ten minutes after Mason and I had gone to dinner:) Neither John nor the nurse had remembered to mention it to us, as the doctor had immediately left after saying hi to John and seeing that I wasn't there. Anyway, they want to see the pneumonia resolved and are consulting again with Dr. Prabhu, the surgeon who left for Dubai. He did admit that the other neurosurgeons do not wish to do the diagnostic surgery.

Dr. Hosing and the bone marrow team who are on for this 2 week period (Dr. Andersson is not on this week--They all rotate for 2 week stints) called for Infectious Diseases people to come in re: ambisome treatment length and other matters. Also John's heart rate is a bit elevated and they are watching that. They are ordering a follow up chest x-ray for today or tomorrow.

Two doctors from Infectious Diseases (read Infections--a big component of this place which is full of immune compromised peope) examined John at different times and each asked a million questions--whether John had been exposed to TB, where he had traveled, and a lot about the timing of various drug regimens John had been on and various symptoms and problems we had seen. These interviews were interesting, stimulating in our minds many hypotheses, but again frustrating because there have been so many events that it seems impossible to speculate about what might have cause what and when. At least from Mason's and my perspectives. These docs do seem very interested in looking for solutions for the brain problem, as well as checking out the pneumonia further by ordering a CT scan of the chest for today.

I am about to go up and see doctors again. John and Mason were sleeping when I brought breakfast to them. I got a great night's sleep in the hotel and am super grateful to Mason for being here with me. More today, I promise, no matter what I still don't know....Love, Anna

Treatment for pneumonia, waiting, no Dr. Forman today

Sweet ones: Thanks for your calls and emails. Everyone wants to know exactly what we want to know--MRI results, diagnoses, and next steps--To make sense of all of this chaos happening with John and in our lives, of what Dr. Forman calls the "mischief"

And yet, nothing seemed to happen today. We had been admitted late last night to Room P602 on the leukemia floor, with the idea of transferring--when rooms became available--to G11 with other bone marrow patients. But that didn't happen and nothing else really did either.

There were all-day infusions of vancomycin, breathing treatments to open John's bronchial capacity, oxygen through little plastic tubes going into his nose, an infusion of ambisome, and the same oral medications he's been on. John slept a lot, ate three small meals (plus a brownie snack), listened to WWOZ from New Orleans from my laptop, and chatted a little with family--all very low key and quiet. Even Mason and I dosed a lot, talked to a few doctors, but essentially waited all day to talk to Dr. Forman, neurologist and keeper of the keys to the MRI results.

After leaving John's room at 5am to have coffee in the 24/7 cafe and go over to the hotel room to change clothes, take a bath, and stop for a quick breakfast on the way back to John's room with the fresh squeezed OJ he requested, I had made a point to stay in John's room every minute of the day, waiting for Dr. Forman. One of Dr. F's residents came by around 11 and mentioned that Dr. F would be around after 1pm. Finally at 5pm, we demanded that the nurse page Dr. F and he told her he would see us tomorrow. That was it.

To be fair, we have experienced on two other Wednesdays that this is a day that Dr. F spends time with his aging parents and sometimes misses hospital visits altogether--I guess part of being that zany, brilliant, bow-tie wearing maverick of a really caring doctor, who can't quite deliver on all of his good intentions....We understand.

So maybe tomorrow, we will have something that seems like information. As I re-read my words about nothing happening today, I am compelled to revise that thought and say that lots of resting and treatments did occur----and that is huge and beautiful.

We'll keep you posted, even on the "nothings," if that's ok.

Have been reading to John every email you send and summarizing every call. He smiles and loves every word. By chance, we picked up his cell when Mafalda Stazi of Paris called. He loved it, but also has 22 messages waiting! We'll get them all. And we really really thank you.

Love, Anna and John

Part of the mystery solved---Pneumonia!

Quick note from the ER at MD Anderson Hospital, Houston. John oxygenation was below 90%, so they did another chest X-ray, blood gases, and other tests. Results show pneumonia. They are starting an infusion of a different kind of antibiotic, while continuing his oral medications that include, I think 3 antibiotics. The physician's assistant who was just in the room told me that John's chest pains, shortness of breath, dizziness, and disorientation can be partly or fully explained by this finding.

I believe they are also ordering a brain MRI for later tonight, but we won't hear about that until seeing Dr. Forman, probably tomorrow in John's inpatient room. The process is moving a bit slowly because of the focus on pneumonia, but it appears that wheels are turning toward admission. I would assume they will want to get good and rid of the pneumonia and have John stay here to watch over him.

Dianne Stewart came over to see us in the ER, right after we arrived. She was on business in Houston and saw the blogpost information. Thanks to her and many many of you who are sending beautiful email messages which I am reading to John!

Big big hugs to all!!!!

Mystery still unsolved, John weaker, To Houston...again

Hi all: This is just a quick note to many who've been following and especially in Austin--the folks who've signed up to help this week with rides and food for his infusions.

John is getting weaker and weaker. At first we thought it was the ambisome treatments that cause chills and chest pains and some nausea. But John's walking is getting worse--he can't go more than a few steps (and has to have help doing that) and his talking is remaining slurred and hard to understand. Also he is very very tired.

Yesterday, I contacted both Dr. Tucker and Dr. Andersson re: these symptoms and they each said that this is not at all normal for the ambisome and that something is not right. Both suggested that we bring John to MD Anderson. Mason flew in last night and we will drive John to Houston today, arriving around 2 to admit John via the ER process. They will notify both Dr. Forman and Dr. Andersson as soon as we arrive. After a few hours of observation and tests in the ER, John will likely be in the G11 wing in the early evening timeframe.

Dr. A told me that John will probably undergo a similar process as he did last time--MRI, spinal fluid test, bloodwork, and that they will evaluate what appears in the brain area and make a decision about next steps. He said they may be "forced" to begin radiation to treat the next possible cause of these symptoms---cancer in the brain--either leukemia or another kind of brain cancer. He was sad and sorry, as there are more risks and weaknesses that are associated with radiation now, but said they may not have a choice because they can't let his brain functions deteriorate.

Under the "best" scenario, we will see further reduction in the shadowy places on the MRI and he will undergo the rest of his ambisome in the hospital and remain there until he is stronger and starts some rehabilitation. I assume that no matter what, he will be in the hospital for at least a week or 2, and possibly more. I cancelled my 3-day training gig that was to start today and will remain focused on John until he gets better.

Obviously all diagnoses are speculation until we are examined today, so I will keep you posted. Meanwhile you can locate John via hospital phone 713-792-2121 or his cell 512-784-7533 or me through cell 512-431-6619. We will have a room at Rotary House, 512-790-1600, and will pursue getting a suite by this weekend so people can visit, camp on the floor or sofa bed. Also when Mason leaves other bed will be available as I sleep in John's room and just keep clothes there. I welcome all visitors and all email and all cards, etc. The love we share with so many is our biggest solace.

Love, Anna