Here We Go Again

Just when you think there is good forward movement, John has had a setback. We are hoping this isn’t a big one, but right now, we don’t know many details.

The rehab this week at the rehab hospital has been very intense but he had settled in well. He seemed to be getting stronger each day. He had more awake hours and other than eating, he seemed like he was making great strides in stamina, mobility and functional skills. He had gone 4 days without any transfusions and was settled into a good routine.

Today he was to have an afternoon field trip to the Mayo to have some follow up tests and a blood treatment that they don't administer at the rehab hospital. In transport he passed out and the driver redirected to the ER.

We don't know for sure what is happening other than:

• He has a fever again
• He is confused
• He is wiped out
• He tested negative for Covid and the flu
• He will be at the Mayo for a couple days visiting the 4East staff again.
• It will be a night of tests.

Stay posted.

Julia

Breaking Up Is Hard to Do

After 52 days, it was time to pack John's bags and say good-bye to The Mayo and the amazing team of the 4E BMT Unit. The doctors said they have completed their mission of a transplant and treating the complications that came with it. It is up to his body to continue the process the reboot started.

It was a tense day and a half but it was time for John to take that next step to a rehab facility to focus hours each day regaining strength and mobility. I will share more on the departure in a future post. Right now, John needs time to heal his physical being as well as his cognitive awareness. Encompass Rehab Hospital of Scottsdale will be John's new home for the next few weeks. 

Starting tomorrow morning he will be busy at least 3 hours a day between Physical, Occupational and Speech therapy. He is still relearning to eat while weaning off the IV nutrition. We chose this facility because they can also administer his dialysis, needed blood transfusions and continue IV therapy for the CMV.

He is doing better answering the phone when he isn't tied up but he still isn't reading or texting. If you have a message for him, feel free to post or text and I will read them to him. If you want to call and offer a word of encouragement, you will have a better chance of catching him in the afternoon or evening.

Thank you all for the continue support and prayers!

Julia

Where Has the Time Gone? - June 23, 2022

It’s Day 50 since John’s wild journey of SCT2.0 began. It was May 4 when we packed a bag and headed to The Mayo for a very unknown chapter. Based on our experience of 13 yrs ago, John was in the hospital for 12 nights followed by 100 days of home isolation and several more months of feeling weak, but eventually he felt normal. He had a few days of no memories and high fevers but everything went relatively text book in 2009.

This time we knew it was more risky given his age, his new complication of kidney failure, and the aggressive nature of his cancer. We knew it was likely not 12 nights and 100 days of home isolation, but never in my wildest dreams did I think he’d still be in the hospital after 50 days or be recovering from a cytokine storm, West Nile Virus and Cytomegalovirus (CMV). We just thought he was having another stem cell transplant. Did I really say “just” a stem cell transplant?

The Past Week

Since I last posted, I hadn’t thought much had changed, but in many ways a lot has. I've kept a journal since the first day he was in the hospital in late March of this wild journey. When you are living this each day, you lose track of the progress. It wasn't until I went back and started looking at the last week that I saw there have been a lot of changes and many for the good. 

It has been 5 days since he’s had any fevers at all. His dining restrictions have been completely removed and they are working to wean him off IV nutrition, unfortunately the SCT does a job on his tastebuds and desires to eat so we are still struggling to find something that appeals to him now. Even the trusty mandarin oranges from SCT1.0 aren’t working. He consumed less that 300 calories yesterday and I spent much of my day reminding him to take a drink of a protein shake, Ensure, a protein bar or try ordering something from the patient menu.

He has had a “sitter” in his room 24/7 for a week since he got restless in a confused state and removed his own PICline on Father’s Day morning. This really put a crimp on any chance of celebrating when he needed to have a procedure to insert a new line just below his shoulder 44 cm through the artery above his heart.

His dialysis schedule has been changed and increased all week to accommodate the excess fluids that have been building around his heart and lungs. They were removing as much as 9-10 lbs. of fluid from him a day in order to control his breathing, heart rate and blood pressure.

He had been getting daily blood/platelet transfusions to maintain his blood counts because his marrow still isn’t creating blood cells like it should be at this point.

The treatment for the CMV treatment has knocked down much of the progress he had gained after the transplant in the blood count area.

His weight has deteriorated and at a low was 144 lbs (that is after a big fluid draw) but generally is staying steady around 150 lbs.

John's body is fighting so many different things that it wasn’t able to focus on holding down the cancer and the Remission that we celebrated was short-lived.

His strength and awareness have been the biggest losses. With continued diarrhea, dialysis 5 times last week and his inability to do any sort of physical therapy, his frail body couldn’t hold him upright on the side of the bed, he hadn’t been up in a chair for days, they didn’t feel comfortable putting him in a wheelchair and his joints were getting stiff and deformed. His dialysis sessions left him completely unresponsive for 8-10 hrs a day to even the simplest of commands or questions.

Where Are We on Day 50?

We’ve made huge strides in the last few days.

Now that he isn’t fighting fevers, he is aware more of the time. He still struggles with confusion but has come back from his last 2 dialysis session aware of who he is, his birthday and generally where he is. What I was referring to as post-dialysis Zombie John hasn’t been around since Monday.

Also with the fevers gone, he is needing less blood products and they were able to play with the thresholds to even make them less necessary. It is looking like he will only have 2 or 3 transfusions this week.

He isn't having the pain in his abdomen from the CMV Colitis and the G/I issues are improving.

He is able to swallow small pills again and attempts to take a few bites of solid food.

His CMV has finally started showing response to the powerful anti-viral IVs but he will continue IV therapy for at least 6 weeks. They were still worried on Monday that it might be treatment-resistent.

The West Nile Virus is finally testing Negative.

The lingering state of confusion is slowly improving. We are attempting simple tasks and cognitive games. He is trying to use the remote again and answer his phone sometimes. He knows people but still struggles with where he is, what year it is, whether it is 2 in the afternoon or evening, short-term memory, or the fact that he doesn’t have to get up to go to work.

Small adjustments in his schedule have allowed him to have physical therapy and occupational therapy for 3 days in a row. Today they actually got him back to where he was after ICU by walking a lap with the walker around the small ward of 10 transplant rooms.

The doctor of the week said today that he doesn’t know that there is much more they can do for him. He really needs more intense therapy which a rehab hospital can give. He will need to continue getting IV anti-virals and blood transfusions. His body just needs to heal. The hope is that the cognitive situation will improve as his physical condition strengthens. They still aren’t sure if his stem cells are going to graft and fill his marrow as expected but we can hope.

His case is being resubmitted to the rehab hospital that he was supposed to discharge to on May 31. The feeling is by early next week he will be able to meet the minimum requirements for acceptance:

• No more that 3 dialysis sessions a week
• No more than 2 transfusions a week
• Capable of engaging in 3 hrs of PT/OT a day
• No fevers
• No sitter 24/7

A rehab hospital is the next necessary step to getting him capable of getting in and out of bed and a vehicle, assist in dressing, feeding himself, walking unassisted, and going into the bathroom. Then we can bring him home to this new house that he only saw the 20 minutes we toured it before we put in the offer last February.

I keep reminding myself as I remind him, patience and baby steps!

Small Things, Big Wins - Day +40

I feel like it is more of the same here at the hospital. John isn’t awake or alert much at all. His labs haven’t changed much. They do say the CMV is slightly improving but not enough to see the diahrea improve yet. I do feel his belly isn’t as bloated and he doesn’t complain about abdominal pain now which is great!

The confusion has been worse this week with his fevers a couple times a day/night and also after dialysis. The West Nile is still showing active, but it is sort of like Covid - you are positive or negative so no way to tell other than continued symptoms whether it is dissipating unless we put him through a lumbar puncture. Since they don’t treat for WNV, I chose to not put him through that at this time. He has been having a greater build-up of fluid in his chest area so they are taking more fluids off with each dialysis treatment. Because of his weakness and cognitive issues, he isn’t participating often in Occupational or Physical Therapy now, but they encourage music and are attempting to move his frail arms and legs as much as he will allow. They haven’t felt he was up for sitting in a chair but did get him upright on the side of the bed today for a few minutes.

I am hoping we have an “awakening” again this weekend for the boys to come up to visit for Father’s Day.

At home, I feel a bit more accomplished.

Since we got into the new house, there were a number of things that would have been “John’s jobs” - yes, we were pretty traditional around the home - I do all of the cooking, organizing, decorating, sewing, and technology stuff. John does the yard, mechanical and labor stuff. We grew up with families that had more traditional roles and we are good with it. No judgment, it’s just how it works for us. He is better at certain things, as am I.

So moving into the house has been a challenge without my other half. We survived the moved but there were the little things like, the stove/oven didn’t turn on, the garbage disposal didn’t turn on and the sink was backing up, the new refrigerator water line was run but didn’t have an end to plug into the icemaker, the washer keeps getting off balance.

Before we moved a great friend came over to help the boys install fans and TV racks. Big Win! No way I could have done this and I couldn’t even find a handyman to come do it. I still need a handyman to install some shelves, change the deadbolts, and a few other jobs if anyone has recommendations.

This weekend another Big Win - Jason came to the rescue on the range because I had tried the breaker and GFI, and no power. I knew it worked before we had the renovations. He was able to pull it out and it just hadn’t been plugged back in after the work. Who just pushes a big appliance in without plugging it in?

I had not been giving the backyard or pool any attention in the last 2 weeks, I’d been more focused on unpacking at least 4 boxes a day. I walked out and most of the leaves and baby lemons had dropped from the lemon tree, the orange tree was looking pretty sad, the pool was full of leaves and cloudy. Guess I needed to figure this one out before I was a breeding ground for more West Nile Virus. I soaked the tree roots and start searching for recommendations for yard services. I brushed down the sides of the pool, scooped out the leaves as much as I could and figured out how to run a cleaning cycle on the pool. Shocked it and took a sample to the pool store. I got the name of a pool service and have them coming, but at least it looks clear again. I’m not sure I’m ready to get in until I know it is “safe” and I won’t get some horrible skin reaction like I did many years ago with our Ohio hot tub, but it is back to picture-worthy :-) I won’t credit this as a “Big Win” but it is certainly better than it was last weekend :-) I also have a couple lawncare services set up to give me quotes so we don’t look like the eyesore on the corner.

This a.m. I had my biggest house “Win” -- the garbage disposal hasn’t worked since the move and water would build up but each night it was drained out. Again, I knew it worked before the renovations. I had checked and it was definitely plugged in. The breaker was fine. The GFI was OK. So like the millennials, I went to YouTube and learned there is a reset switch on the bottom of most InSinkerator disposals. I tried that and I got a buzzing when I turned it on, but not the normal grinding and no draining. I had done my normal stick a long-handled brush down it to be sure there wasn’t something stuck. I’m a wuss and afraid to stick my hand down in there. I know I’m the only one in the house and if the switch turned on, it would be me doing it, but I still have that horror image of it turning on by itself with my hand down there.

So again, I consulted home maintenance by YouTube. I ordered the little silver garbage disposal key wrench from Amazon. After many tries, it finally started loosening and crunching something in there. I’m not sure what had dried down there (could have been something from the construction or maybe just gunk from rinsing dishes) but it finally seemed loose, then a huge swish of water which scared the bejeebus out of me because I was under the sink and thought it was going to dump all over the inside of the cabinet and me. Silence. At this point, I was still scared to turn it on, because I didn’t know what might be in the grinder but I proceeded by running water and it was draining. I flipped on the switch and HURRAY! Garbage disposal now works!  I don’t want to share the gross photo of the sink and the disposal before I cleaned it up because it was embarrassing that I let it get to that point, but it is all now cleaned up and I did this one myself! Big Win!

Awakenings - Day +36 & +37

Robin Williams fans may remember the beautiful 1990 film with Robin co-starring with Robert DeNiro, “Awakenings.” It wasn’t one of Williams most popular films but it was one of my favorites. In the film patients in a mental health hospital who had suffered encephalitis were in a long-term catatonic state. Williams “wakes them up” with a risky therapy. Sometimes life imitates art.

Day +36 - June 11

After a rough week of few answers and very little awareness, Saturday was a whole new day. John went from needing 6 units of blood products Friday to only platelets Saturday. He had a slight fever around noon, but otherwise, he was totally aware, and somewhat talkative. Another big difference was that on Saturday he was able to participate in Physical Therapy and Occupational Therapy after a week of inability. The goal was to get him up on the side of the bed and get his body moving again. He said he felt strong enough to stand up with the walker and pivot to sit up in a chair. He ended up walking 5 steps and impressing us all. It wasn’t pretty, but he made huge strides and wore himself out, but it was a good tired.

I read many of the wishes and thoughts people have been sending or posting and he was very humbled.

In the afternoon, Dr. Ken reported that the biopsies of the colon confirmed CMV was causing the colitis. They hadn’t found any of the other possibilities that were feared since he hadn’t shown response yet to the CMV anti-virals. The team asked that we have more patience for the treatment to start helping his body fight the virus.

He ended up Saturday very tired but we felt it was a big success.

Day +37 - Sunday, June 12, 2022

I had great hope of growing on Saturday's success. I took up a protein shake and some cognitive games to work with him to get his brain and fine motor skills going again.

When I walked in, he was alert, had only had mild fevers through the night and was eager try some puzzles and games. We also talked about watching the new “Downton Abbey” film in the afternoon or the original “Top Gun” and asked his nurse to find out when to expect PT. By late morning, I noticed he was less responsive and looking flushed. These are two of the signs I have come to watch for as his fever starts to climb. By noon, he was very quiet and we concluded PT probably wasn’t going to happen. By 4:00 his temp was 102.38 and he was no longer communicating much.

Sadly, life imitated art and the patient had resumed his previous quiet state. When you are looking for a good film, look up "Awakenings" (currently on NetFlix) and hope the anti-virals start having an impact this week and the West Nile Virus stops sparking fevers and confusion. We need his body to stop stressing and continue healing.

Julia

Remission - for Real? - Day +34 & +35

I know this page has been blank for days, I have been waiting for good news to share, and we actually had some yesterday, which seems so odd. Under normal circumstances, we’d be rejoicing, but it feels like fake news. He should be the one sharing this kind of news!

Day +34 - Thursday June 9

Today as I walked to his new corner room with a beautiful view of the Arizona mountains and desert, there was a sign on the door, no food or drink. That was odd because he hasn’t consumed anything but ice chips for days. Obviously, something interesting was going down today.

We knew going into this transplant that there wasn’t a cure and there wasn’t even a hope of remission. The goal was to get a little more time and clean out the over-crowded marrow with a reset to hopefully have new drugs FDA-approved before the MM got too active again.

You see, his first SCT only gave a “very good partial” response. Before the first transplant his light chains were 65 and after 2 months he was down to 8. By his 100-day mark, he was 5.98. The goal was to get in the 2s. Boy were we naive. We thought 65 was horrible and he was near death. His MM doctor at the time was pleased with the drop and decided to hold off on maintenance chemo until it started to rise. Why use up a good drug if your body could hold you at a low number. John was 22 months without any chemo and we felt blessed but that wasn’t long enough to consider the transplant a success. At the time they said he would likely never do another one unless it was last-resort because he didn’t have enough of a response. If you want to see how different that 100 days were, here it is in his words. 

This time he is only 34 days post-transplant and his light chains have gone from 1,478 to 2.9. Yes, you read that right, 1,478 to 2.9. This is amazing to hear Dr. Ken Doll (this isn’t even my nickname for him, I’ll say more on that later) say “You are in Remission.” and in the next breath, you need to have a biopsy of your colon to understand why the inflammation in the gut is spreading, a C/T scan and Echo to learn more about the fluid that is building around his heart and lungs, more labs to figure out why the anti-viral medications for the CMV don’t seem to be making a difference. And finally, I don’t even think John comprehended the most important words “You are in Remission!”

The prep for the sig scope began immediately, thus the no food or drink. His biggest obstacle was low blood counts. 4 units of platelets and 2 of whole blood. They finally had him built up enough to go through with the procedure. When he awoke, I was able to be in the post-op cube with him thanks to a friend and Nurse Angel. He seemed as good as he has all week.

Day +35 - June 10

The day started as good as any this week. He seemed a little stronger, he was making eye contact and speaking a little. Dr. Ken Doll and his sidekick John were in before dialysis and stressed the need for patience after everything yesterday. Everything with the heart and lungs was good. The fluid they feel is just a build up from all of the blood products and extra IVs he is getting and that should be remedied with dialysis today. 

They feel the biopsy will take us in one of 2 directions.  This mounting inflammation in the colon is either from the CMV as originally felt but the current anti-viral isn’t working or it is from Graft vs Host which isn’t common with an auto-SCT and something they had mentioned back when he went into ICU where his body is struggling to accept the 13-year-old stem cells. This normally occurs from stem cells of a donor which the body struggles to accept. If it is GVHD the treatment is very different from the anti-virals of the CMV. The high dose of steroids can inflame the CMV. Treatments for either cause declines in blood cell counts requiring continued transfusions. The results are supposed to be back in 48 hrs but Dr. Ken Doll had Sidekick John request a stat order. Hopefully, something by this evening to begin a new treatment right away.

He was probably the most alert he had been all week after the doctors left the room but by the time the dialysis nurse arrive to take him away, the fever had started to climb.

Dr. Ken Doll

OK, before I proceed, I’ll tell you about Dr. Ken Doll. A couple of years ago, I was doing work with seniors who were in need of additional care and resources. Helping them find next living arrangements that met their needs and budgets. I met a very sweet woman in her late 80s who was a dynamo and part of a group of snowbird women from Mesa who loved to play Mah Jong, exercise and eat out. We had coffee a couple of times and she was telling me about her journey with Multiple Myeloma. She said she was diagnosed at the Mayo in Rochester but hadn’t been serious enough to need treatment yet. She saw a doctor that was like a real-life “Ken Doll”. Tall, dark, handsome and young. She told how she enjoyed going to her quarterly appointments and if John’s doctor ever retired or left, we should look up Dr. Ken Doll I knew the moment he walked into John’s room, this was Dr. Ken Doll :-)

A Totally Different Man Returns

Back to John. Four hours after he was swept away, the transport guy wheeled him back in. He often comes back from dialysis very tired, but this patient returning wasn’t aware of anything. All afternoon and evening he was just gone. 

The nurses knew things weren’t right and called Sidekick John in. John sat with us for a very long time trying to get a response out of my John, checking him out and just being present. He called to the lab and said it is urgent to get the results because a change in treatment has to start soon. He said John is fighting for his life. His heart is strong, his cancer is in remission, but the rest of him is out of control with West Nile Virus, CMV and quite possibly GVHD.

Pray for a turn around very soon! He needs to know that he is in remission!

Julia

A Breakthrough Is Coming - Day +28 & +29

…But When?

Friday, June 3

The last couple days have been rough. John is a month post-transplant in the hospital (32 days on this current admission) and on a downward spiral both physically and emotionally. It has been so sad watching his discouragement build and his weakness consume him. They have continued to bring more brainpower and run more tests. The tone of the team has gotten more serious again.

He had made so much progress the week after getting out of ICU and through the move weekend.

At 5:00 p.m. Friday, the door to John’s room flew open and excited practitioners from Hemotology and Infectious Disease flooded the room. They had answers and huge smiles. John had tested positive for West Nile Virus and Cytomegalovirus (CMV). How could this be? But it explained the weakness, the fevers, confusion, nausea, horrible diarrhea, fatigue, floating rash, bloating and abdominal pain. They had seen inflammation in his colon on a C/T Scan the Thusday that hadn’t been there several days before and it was explained by the CMV test. They had answers and a treatment plan. This isn’t going to be a quick fix, but at least they are telling us there is a fix. Some of the other possibilities that they had been testing for would not have been so easy to treat.

You may ask, how did he get these side infections while in a pressure-positive, sterile environment for 30 days. The I.D. doc said that CMV is something that most adults have been exposed during youth and to a healthy individual it resides dormant without concern. A transplant patient or someone with a highly-compromised immune system and on steroid therapy can activate it and have an extremely serious condition.

The West Nile Virus was another shock. When John’s white cells got to a level that he normally might have gone home, we requested “patio privileges” to get him some fresh air, sunshine and a change of scenery from the 4 walls of his special room. We all agreed that this would help boost his morale. We stayed within the beautiful rose garden or the cactus park outside the front entrance and we stayed masked and distanced from any other strollers. I would push him around these areas, we would pull his wheelchair next to a fountain or park bench and just relax, talk or enjoy the warmth from his highly chilled room. Apparently there are mosquitos that neither of us had noticed on our walks. They said it was a real problem in Arizona last year and it had started showing up early this year.

The IV therapies for both of these conditions began as quickly as they could get them to his room. We ended the day feeling hopeful.

Saturday, June 4

I made my usual 5:30 a.m. call to his nurse and heard nothing too concerning. Low grade fevers which had become normal each night, but he was doing well and needing blood products. I spoke with him around 8:00 to see if he was good with me staying home to unpack and do a little housework. He sounded stronger than he had in a week. He said he felt pretty good and would see me at noon and he thought the idea of playing a game might be interesting.

When I walked in at noon, it was deja vu. There were several care team members scurrying around the bed, a cloth on his forehead, oxygen cannula in his nose and badges that said Rapid Response. This is where we were a few weeks ago when the fevers were climbing, the shaking, confusion and ICU started.

He had already had 2 units of platelets this morning, was getting a unit of blood (BTW, Thank you to the Goulds for donating blood yesterday!), was on a chilling mat and the mood was serious. They said he was going to get an extra dialysis run today and they are giving him IV nutrition again while they give his digestive system a rest.

He seemed to settle down as his fever fell toward normal before dialysis, but this wasn’t the way I expected this new “plan” to start.

Let’s pray the new treatments take hold soon. He needs a break!


Julia

It Takes a Village - 6/2/2022

It’s Julia again. I had hoped by now John would be back at the keyboard, but he just isn’t ready yet.

It is probably pride that drives us to want to appear organized and self-sufficient. Asking for help isn’t exactly in the Churan nature or probably most people's..

The Churan Village

2714 E. Dry Wood Rd, Phoenix, AZ

When we took on the project last December of selling the house and buying a new one, we were taking on the tasks to get ahead of the need to get into a more manageable one-story home. The plan was to clear clutter and reduce “stuff” before the move happened. We had a couple of months to prepare which we felt would be fine.

The new house was going to be great for us, but it did need a good deal of updating. The current house was still having warranty work by our builder so we had to deal with coordinating that. Then there was the task of packing, finding homes for things we couldn’t take and setting up renovations.

When John went into the hospital in late March with rotavirus I had just started a new job and we were still taking bids for our renovation and move tasks. We had a little bit packed and were fooling ourselves that May 31 was plenty of time for the 2 of us to pull this off. One week in the hospital turned into 3 weeks and dialysis and PT were now a factor along with John now being extremely weak and less capable of helping very much and I was learning a new job.

We had many offers to help when we needed it but we fooled ourselve into thiking we had it under control. We even had 4 different friends/family offer to fly in from Ohio or Florida to help organize the project, but declined because it was going to be OK.

I considered backing off on renovations and just cleaning and moving in. John being our voice of reason said if we didn’t do at least the dirtiest jobs while the house was empty, we’d never do it so we made our selections, picks contractors that we had worked with previously and put together a calendar and put the plan in motion to begin as soon as the current owners moved out.

We began with a dear friend bringing over boxes and another insisting that she come to at least help bubble wrap our precious glass and crystal family heirlooms. The a great friend of John’s knew we had several items furniture items we needed to rehome and a lot of holes to repair in the walls from my over-abundance of artwork. He assembled a crew of people who didn’t even know us to come do the heavy lifting and repairs.

Once I acknowledged I couldn’t get this all done myself, we had so many amazing people step in to help.

• First, our amazing boys insisted on taking charge of the packing to allow me to be with John almost full-time in ICU
• They recruited a whole group of their friends that we have known since high school and college to come pack and do little odd jobs around the house
• Our awesome neighbors were very helpful in taking the trash in and out and keeping an eye out for packages so our local porch pirates didn’t go off with our booty
• Another neighbor was able to call in a favor and find a dialysis opening when the hospital was struggling with placement
• Our amazing painters and flooring guy went above and beyond to stay ahead of schedule and took on some items outside their scope so I didn’t have to worry about the new house project, Let me know if you need a referral, I will gladly send them your way.
• A super-supportive new boss who has been so understanding and flexible with me.
• Neighbors who text me to meet at the pool for a glass of wine just to unwind after really tough days
• One dear friend brought an order of Butta Cakes for the floor care team on John’s Re-Birthday
• A couple other girlfriends brought CRUMBL cookies for the ICU crew and took me to an early breakfast just to have a non-hospital meal
• We have had so many dear friends drop off surprises, send cards, online wishes and prayers - you have no idea how much the support means!
• Two former members of John’s oncology team have kept tabs and been amazing sounding boards throughout this process and resources to explain things when my TV medical degree wasn’t enough.
• A great friend of ours took a day and a Covid test to sit with John on move day so I could focus on movers
• The friends that call or text John regularly to complain about his favorite sports teams or just give him grief and a laugh to take his mind off the situation - even when he isn't up to answering, I make sure I read the messages to him.
• My cleaning ladies who worked their schedules to accommodate my schedule to prepare 2 houses
• Several former co-workers of John’s came to the rescue after move day to help deal with the odds and ends left from movers and make a huge dent in unpacking
• Jason’s girlfriend, Erin, and her family have been so supportive making meals and helping pack and unpack
• The plumber and HVAC companies that made emergency runs to the house when I explained my situation and had no A/C and a plumbing problem on move day

And this doesn’t even touch the kindness that everyone at the Mayo from the nurses, doctors and aids to the screeners at the door each day who compliment my decorative N95s or the cafeteria woman who recognizes me now and comments when I’m having a good hair day. (which isn’t very often these days)

I’m sure I’m forgetting some people and I’m so sorry for that. It isn’t intentional, I promise. Stress and sleep deprivation do funny things to a person. We're not sure how we can ever express our gratitude for all of the kindness and help we have gotten over the years, but particularly these last couple of months.  We are humbled and grateful!

John’s Village

I mentioned the great care he’s getting above from the Village of Angels at The Mayo, and it has been amazing.

I apologize for going silent for a few days. We got so involved with the move, and then excited for a few good days as he was making progress. When I last wrote, it was looking like he would soon be released to a rehab hospital and on the way to coming home to our new little Desert Peak house. They were doing everything necessary to prep him for this.

Then Monday came and he has taken steps backward all week. His fevers are back mainly in the evenings and at night. With fevers often comes confusion which is really hard because he often knows it but can’t do anything about it. He struggles to use his phone so if you’ve called and he hasn’t picked up, it either isn’t right by him, he wasn’t aware it was a call/text or he just wasn’t strong enough to answer.

Many of the markers they watch for after transplant have been improving to where they expect but he is still requiring transfusions and platelets almost daily and sometimes multiple times a day. This is still a big concern and isn’t what they expected. They have seen other problems post-transplant that aren’t generally associated with an auto stem cell transplant. We knew this was risky and we continue to pray they will find some answers to put him back on the road to recovery soon.

Thank you to everyone who has been part of his support village these 13 years!

Julia & John