A Day Without Tears - 10/30/22

When you are a child, you somehow know at birth that if something isn’t right you cry, If you are hungry, you cry. If they have a full diaper, you cry. It is about the only form of communication that a baby has. As that baby grows older, crying is used for a few reasons: you are physically hurt or you didn’t get what you wanted or you are trying to get your big brother in trouble for doing something to you.

Again, as we age, we stop crying for a number of these things. If I get a paper cut or get a shot at the doctor’s office I am not going to cry. Some of this change comes pressure from our parents or from our peers. No one wants to be called a cry baby.  As an adult it becomes more of a teller of our emotion. When two people end a relationship, at least one of the two cry. When we lose a loved one, we often cry and may do that for a good while.

I remember as a teenager watching “Brian’s Song” and crying like a baby. Brian Piccolo was a running back with the Chicago Bears. It was just sad and really hit me hard. As I have aged, I have found that it takes less and less for the waterworks to start flowing. I have even had commercials hit me hard. I have gotten to the point where it just doesn’t take much.

Of course, being on the brink of death can change one’s view of things.  If I hadn’t received a second stem cell transplant, I would be gone by now. I probably had two months to live when I entered the hospital. If you have read the blog in the past, Julia did an awesome job covering my troubles during my 101 days in the hospital including 8 days in a coma.

All of this makes me appreciate what life I still have. That, of course, doesn’t keep me from thinking about the things I will likely miss in the future. This round of chemo will likely be my last and there’s nothing after that. Don’t feel bad for me but thinking about those things make me cry.

This week was a big one for us in that Julia has really progressed with her nursing skills. We have been doing home dialysis for the last few weeks and today was the first putting the needles in without the trainer around. She did a great job and will only get better. My big news is that I have progressed to being able to use a cane instead of the walker.

We keep on plugging away as we do everything we can to get back to our old life. Keep praying for us, they are all appreciated.

I’m Back - 8/7/2022

It was Day 5 (May 11) and I was feeling a bit cocky. I still felt perfectly fine – nothing like what I remember from 13 years ago. I obviously disturbed the transplant gods as the next day that I woke up and remember anything was May 19 when they were removing the breathing tube. My memories were swiss cheese-like for the next couple of months.

Between May 11 and now, I believe a little miracle or two happened. I very easily could have died several times. It pays to go to The Mayo. Since then I have battled multiple challenges – a cytokine storm, Cytomegalovirus (CMV), West Nile Virus and Cocci Pneumonia. The doctors were fighting so many different diseases that they struggled to find the real cause of each of my symptoms.

When Julia left off, it was July 5 and the doctors had just suctioned out my lungs and were awaiting results from the biopsies to shed light on what was causing the latest fevers, delirium and pneumonia. The pneumonia was a by-product of a weakened immune system that allowed dormant cocci spores from a bout of Valley Fever from 2015. If you missed that battle, you can catch up on that blog entry here.

Once they figured out the culprit and a treatment plan it took two additional weeks of therapies at the Mayo. Finally on July 22 I was able to return to the rehab hospital and start all over.

After arriving at the rehab center we began 3-5 sessions daily between physical therapy, occupational therapy and cognitive exercises with specific tasks associated with each session. The repetitions have increased, the weight has increased and more difficult exercises have been added. I came into the center walking approx. 80 ft in a session with the assistance of a walker. Now I can walk 500 ft per session with a walker. Arm exercises used bands and no weights three weeks ago and now I can use both bands and weights up to 2.5 lbs. I am able to shower and dress myself with minor help. And I’m looking forward to continuing therapy from my new home sometime in the next.

This is going to be a long journey as I have significant weakness in all extremities. I think it will be at least a year for me to get back to where I was before the transplant.

Otherwise, I feel great. The myeloma continues to remain controlled with better results than I’ve had in years. I’ve gone 3 weeks without any fevers and a week without any blood products. My body is finally adjusting to dialysis 3 times a week.

I want to thank you all for your caring support. I know there have been prayers said in many languages and I think God heard them. Without all of you, I wouldn’t be here.

John

Yes, John, You Are Special! - July 4 & 5, 2022

The past 2 days certainly proved John's mother, Julia, right. For 34 years I have heard him talk about how the sun rose and set behind Johnny Churan, if nowhere than in his mother's eyes. How he was a "miracle baby" and he was a perfect child. :-) I've heard many of his older cousins who experienced his childhood confirm this.

Well, he is certainly proving at least that he was as "special" as he proclaims by getting celebrity-worthy attention at The Mayo. 

His fevers have been persistently bad the last few days as he is battling difficulty breathing, high volumes of fluid and a variety of unspecified problems. I had spent most of the weekend sleeping in the recliner in his room watching him progressively battle. 

I don't think anyone one other than maybe my grandfather who finally passed at 96 had a stronger will than my husband. John has been determined to keep fighting to get to the next treatment or next drug that will heal him or give him more time and a chance to live life, move into his new house, start rehabbing in his new pool, travel to see friends, anxiously see how good his Dayton Flyers will be this year and experience his boys having families of their own. 

The Mini-ICU

After Sunday's emergency bronchoscopy and fluid reduction, he had a clear evening as the fevers finally broke, the fluid was removed in and around his lungs and other than a bad cough and tired, he seemed on the right track again. We didn't have answers on this pneumonia that was developing, but he was feeling good and unaware of the procedure or details leading up to it. 

The 4th of July was a different story. The fireworks weren't in the sky for us, the were brewing in his room. 

As his fever started raging in the 101s-103s, the ice packs and cooling blanket went on, the A/C was cranked, the cool compresses on his head and the delirium, the cough got worse and through the Monday night, I kept alerting the nurse when I noticed changes in his breathing. By Tuesday morning he was seriously struggling with high blood pressures, heart rates, and shallow, rapid breathing, or as I've learned in my real-life training now, "respers" were in the 40s. and that isn't good. He was maxing out on Tylenol and they have been giving him daily dialysis to remove swelling in his face, legs, and most importantly chest.

The new team came on fresh from their holiday celebrations to tackle the day and immediately kicked into action. We had physicians, techs, therapists, nurses and support staff descend on his room just like a month ago:  Respiratory, Pulmonology, Nephrology, Hemotology, Nutrition, and ICU. They talked about ICU, but were trying to avoid it. Each time a team would leave some new piece of equipment would quickly be wheeled through the room or attached to the wall and the noise kept getting louder between experts conferring off to the side and the motors of these devices. I would have taken a photo just to show the equipment and flurry of people, but I don't want any photos of him in that situation. 

They had him on IVs for blood products because his fevers are just burning through anything his rebooted system is making. He is getting anti-virals, anti-fungals, antibiotics, now steroids, nutrition, various electrolytes and I've sort of lost track on some of the bags hanging. He has been bumped up to high-flo oxygen to help push air into his lungs to make it easier to breath while whatever foreign matter is consuming his lungs right now hasn't stopped (that still hasn't become clear yet.) There were breathing treatments. The Remote Video Monitor to watch his every move and alert nurses who can't be in the room every moment. Then there is the chiller blanket connected to a big, loud cold water cooler that pumps the temperature-regulated water through the baffles of his blanket to help bring the body temps down while he awaits the next dose of Tylenol. He hates this blanket, but if we can figure out a quiet more transportable option, I think we could sell one to every female over the age of 50. Oh, and don't forget dialysis to remove 3.5 more liters of fluid.

The door was constantly opening with his 2 nurses, respiratory techs to monitor the oxygen and breathing treatments, radiology in to scan various parts of his body, cleaning people to take care of the mess that comes with lots of medical flurry, an ICU nurse checking in hourly, the NP and Team Lead peaking in the window frequently to look for changes. 

By 4:00 things settled down, the fever broke, his vitals were normalizing and he looked like himself, a bit more alert and asking for a drink. By 5:00 he told me to wake him in an hour and we would watch TV. By7:00, he was awake enough to want to talk to the boys on the phone. By 8 he wanted to watch Chicago Med (like we hadn't had enough medical drama for the day). By 9:30 he told me he was tired, I could turn off the lights and go home but to send in his night nurse with his meds so she didn't disturb him later. Always the man in charge :-) 

The Silver Lining

When he wakes for brief moments or hours of awareness void of fever, he doesn't remember any of the difficult parts. He generally has to be reoriented a bit, he asks the highlights of the past day (or two) and then he is content to watch the next episode of "Castle" or "Great Pottery Showdown" until he dozes off or the next fever begins. 

For this, I am grateful.

Cherish the Little Things

The last couple days haven't been easy. John has been fighting fevers more and more. When he battles the high fevers, he generally isn't aware of the situation which is good in some ways, but cheats us in others. We lose the snarky remarks and sharp wit you can expect from him. We lose the guy who obsesses over his plan and schedule. We lose the guy who is consumed with his favorite sports teams and constantly scouring the internet for information on the latest UD recruit or discouraged that his Reds are clearly the worst team in baseball. As he comes off a high fever he may have a few minutes to a few hours to be aware, communicate, get up and walk before the next fever starts to consume his entire being.

The fortunate thing is he generally isn't in pain. 

They have been treating him with a variety of harsh broad-spectrum antibiotics because they haven't been able to pinpoint the source of the infection that is consuming him. Today as I was just running home to shower and grab a bite to eat the Mayo Clinic popped up on my CallerID. They had taken him to an extra dialysis treatment to remove fluid from his heart and lungs. It was a pulmonologist that hasn't been part of his care team. She explained that the chest CT from right before I left showed considerable inflammation and debris in his lungs that hadn't been there the two days before. This explained the increase in oxygen needs through the night and the shallow rapid breaths he had started having this morning. It also explained why he never had a single break from shivering and fevering from 5:30 p.m. until I left to come home at 10:00 a.m.

They felt they needed an answer within the hour to perform this procedure and get moving before the inflammation had done irreparable damage. I called the boys and rushed back to agree on his behalf. John has been the valiant fighter throughout this 13 year journey. I knew he wouldn't want to stop now if we had a chance to find the origin of the fevers and a possibility of a treatment. He just wasn't aware to make the decision.

The procedure went well considering all of the risks they warned me about. He actually came out of it with better coloring, less difficulty breathing and the gift of a few clear hours after the anesthesia wore off. He was even awake enough to order some dinner that I knew he likely wouldn't eat until I pulled out the pint of Graeter's black raspberry chip and he ate 4-5 bites. His nurse walked in and saw me scooping it out and asked what we were celebrating - was it our anniversary? I told him we were just celebrating the moment. 

What I am learning is to be grateful for every one of those brief moments. 

Julia

 

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

Jump for Joy - 5/24/22

OK, this might not be a photo of us, but it is the elation of the day. John's stay in the ICU is over. The care and attention were amazing on 2C but we are thrilled that he has graduated back to 4E (BMT/Apheresis Unit).  

I'll keep this short but John is back on the road to recovery, but he has a much longer recovery ahead with the setbacks. He is extremely weak and unable to stand, walk, use his phone, feed himself as of today, but he is getting there. 

It was the greatest sight to see him sitting in a chair when I walked in this morning. He hasn't been able to be out of bed in a week and a half. He needs a couple therapists and a lift to get him there, but I am certain with the way they are working with him, he'll be assisting soon. 

He still has moments of the neuro toxicity but it seems to be making improvements each day. He struggles with his phone, but he is eager to talk and communicate so feel free to call or text. He was thrilled to have his Fire Stick connected and eager to get back to Ozark and his favorite shows. I try to spend most of my time between the hospital and the new house from 8:00 - 8:00. I am just working from there when I can so I will help him answer the phone and get texts. He can't dial yet and if he is in therapy or dialysis he can't have his phone, but I will help him call you back. He doesn't have strength to talk for long, but the voice of dear friends has really lifted his spirits. He isn't wanting video calls right now but a friendly voice is great medicine.

The blood products continue flowing through the door, but is it at a lower frequency. Dialysis is remaining daily to help clean out the toxicity. The feeding tube still keeps him nourished, but he has started taking a few bites of solid food. We are treating food like medicine right now, a necessary evil to getting stronger and moving his recovery along. Anyone who followed him last transplant may remember that he is at the point where most food and liquids are toxic tasting. We also mentioned that he had ice therapy before, during and after transplant to help with mouth sores. It did help but with a vent tube down your throat for a week, it got raw.  As his doctors all keep saying: baby steps, but any step is a good one right now.

They also started talking about next steps. He will most likely be discharged this weekend or as soon as he is strong enough for a rehab hospital. This is needed to help him regain his mobility and strength. It is a bit more tricky because of the neutropenic precautions (sterile needs) and his dialysis, but the Mayo team is working on that for me. Our goal is to start training for home hemo dialysis the first of July. A minor setback from our May 30th plan, but we'll take it. 

And our move is this weekend so I know I am a little slower to respond, but know all of the thoughts, messages and love are appreciated.

Thank you, Julia 

Jazz Hands Everyone - 5/21/22

For 7 days now, John was hooked up to a Ventilator, an EEG to monitor brain activity, a continuous dialysis machine, sometimes a large apheresis machine for the plasma exchange, a pole of ticking IVs and blood products, cardiac monitors, Oxygen, a feeding tube, plus a few tubes I haven't even asked about. The alarms, pumping sounds and beeping can be almost deafening at times in a unit of probably a dozen rooms. A big shift from the quiet of the positive pressure unit of Transplant. On top of the machines, there was an older gentleman next door who must have forgotten his hearing aids so staff has to yell to be able to communicate.

One by one as the machines started to be weaned, the sound got quieter and quieter. By the end of the evening he was down to a couple IVs and a feeding tube. The vent was removed, dialysis was changed to daily rather than continuous so the constant cycling off blood is gone, the EEG clear and removed. more and more IV bags were stopped. The nurse no longer has to be in the room full-time to silence alarms and watching for side effects. We sit in quiet. He is awake. He is aware of his surroundings and he is calm.

John has been a real trooper considering he is so weak and unable to do more that wiggle his toes, lift his hands and speak at a whisper.

Nurse "Lucky Charm" was ending her 2nf day shift with him making major progress. We were chatting as she was updating Nurse Mandalorian. I mentioned to John that LC wouldn't be back for another shift, she was going home to pack her bags to fly back to see her twin after a long seperation from Covid. A glimmer of old John popped up as he looked at her, smiled and raised both hands in Jazz Hands. 

Let's all celebrate the little things and the silence with Jazz Hands!

The Joy of Baby Steps - 5/19/2022

Anyone who has kids remembers the moment they first started taking steps. There was elation for the accomplishment, surprise when it actually happened, disappointment if you were at work and missed the moment, and fear of the uncertainty of a stumble or fall.

Well, today we had a great baby step. 

The morning had been going so well. The doctors had rounds and all seemed very upbeat again about his progress overnight and his newest readings. They didn't know what was next but John was once again remaining stable, no longer getting support for his blood pressure or temps, was breathing with the vent, and remained calm with an occasional eye opening when being moved. 

The day wasn't to involve much change, no plasma replacement today, a couple units of platelets were needed, but overall more improvement in his white cells and red cells. He hasn't needed blood for a few days which is the first time in weeks. They decided they were confident he didn't need the EEG sensors that surrounded his skull watching for the tremors and possible seizures, so one less machine in his room. 

Nephrology is talking about changing him soon from continuous dialysis to intermittent in the next couple of days. Dr. Glass-Half-Full was back to his smile and positive self since the current treatment plan has him on a path back to the Transplant Unit maybe after this weekend. They were taking him off constant sedation and only giving fentanyl when he appeared uncomfortable.

John was in the care of a chipper new nurse today, Nurse Lucky Charm, as I am now calling her. I told her when I first walked in that I could already tell it was going to be a good day as soon as I saw how content he was in her care. She was his "lucky charm". As with all of the nurses in ICU, she balanced the beeping pumps, dialysis alarms, his "coughing" discomfort, the constant turning and shifting to avoid bedsores, brushing his teeth, washing his hair, moving and massaging his extremities and anything else that needed done with finesse. They are all Super Heroes and amaze me that they keep up this energy for 12 1/2 hrs a day for multiple days. I find it draining just watching from the sidelines.

I had to run to the new house to check the status of the flooring and renovations around noon. (I have the best flooring guys and painter, BTW, if anyone needs services around Phoenix let me know. They have both helped us as multiple houses now.) We are actually ahead of the detailed schedule John and I put together last month by 3 1/2 work days. I love this flexibility so we aren't so crunched for move-in day and I am able to get things like duct cleaning and plumber moved up. 

I verified my phone number as I left and told her to be sure to call if anything went awry but I would be back in about an hour. Just as I was leaving the house, my phone rang and it was The Mayo Clinic. I immediately panicked, then I heard the excitement as she told me the good news. He had awakened and responded by wiggling his toes on command, squeezing her hand and moving his head in a yes and no response to questions. This was the most cognitive activity anyone has seen from him since last Friday (a week).

The drive back was that feeling of excitement he was really responding, disappointment like I missed the first steps of a baby, and anticipation to see them perform again, but what if he didn't. Thankfully a few more times this afternoon he opened his eyes, and once even smiled at me through the mouthful of tubes. He was able to nod and let me know he wasn't in pain, he knew he was at the Mayo, he wanted the music on, and he didn't remember me telling him about the Reds losing a no-hitter. Ha-ha, that was obviously a big head shake "no".   

At the end of the ship he gave Nurse Lucky Charm a big smile when she said good night but that she would see him tomorrow. Then he raised his fingers in a wave.

It was a good day!

Julia 

GodWinks When I Needed - Day +11 & +12

Julia here again...

This post isn't intended to push my beliefs on anyone but if you just want to fast-forward to his status, feel free to scroll down.  I just wanted to let you know where my head was today. Faith is a very personal thing and has been a big part of this journey for us. I respect choice and have no agenda in my thoughts. 

Tuesday I felt pretty positive going through the day as John had seemed peaceful and the team seemed very upbeat which I'll give a little more detail below. As the evening went on, something in the air seemed more tense. No one said anything but sometimes you sense little things about a loved one. I had a call from a friend of his on the drive home and I even said as much. As the night continued, I have been trying to accomplish just one thing at the house to prepare for the move and make sure I have clean clothes for the next day. I cleaned out some half boxes and ingredients from the pantry that I didn't plan to move or use in the next 2 weeks. I then sunk into bed without even turning on the TV. One gift I have had since he was moved into ICU, there is someone with him at all times and I have full confidence in that care. I have really been trying to stay true to my prayer to not worry and put this in God and the Mayo's healing hands. John and I only have a partial medical education from all of our favorite medical shows and this situation is well above my doctor's paygrade. 

If you don't know, a GodWink is a term created by Squire Rushnell, author and television executive, in his best-seller When Got Winks He defines it as "An event or personal experience, often identified as coincidence, so astonishing that it could only have come from divine origin." 

My First GodWink of the Day 

After getting a morning update from the bedside nurse it confirmed my fears that things weren't as stable after I left Thursday night, I started spiraling in my own head. That's the worst thing and I tend to go there in the mornings. I was dreading the drive up feeling like it might be a tough day. I just laid in bed in silence for an hour trying to get the courage to start the day. I walked downstairs and noticed the beautiful bouquet from Mother's Day had popped an Easter Lily that I hadn't noticed the day before. Easter lilies are said to represent grace and purity. 

Merriam-Webster defines Grace as:

aunmerited divine assistance given to humans for their regeneration or sanctification

ba virtue coming from God

ca state of sanctification enjoyed through divine assistance

I got the message! Thank you!

GodWink #2 for the Morning

When I got in the car and started to pull out. The radio was on the same channel it has probably been on all week, KLOVE, but I hadn't paid any attention. As I drive back and forth each day, I usually catch up on calls or make mental lists. A talented young woman from our church worship team had recently released her first single. It quickly rose to the top of the Christian charts this month on iTunes and AmazonMusic. I heard Katy's voice and the words really hit me as I was pulling out of the neighborhood. 

In Jesus Name by Katy Nichole

I speak the name of Jesus over you
In your hurting, in your sorrow
I will ask my God to move
I speak the name 'cause it's all that I can do
In desperation, I'll seek Heaven
And pray this for you

I pray for your healing
That circumstances would change
I pray that the fear inside would flee in Jesus name
I pray that a breakthrough would happen today
I pray miracles over your life in Jesus name, in Jesus name

This is a beautiful song. If you want to hear this budding young artist, Katy Nicole, check out her hit. 

If John hadn't chosen "Well Done" by another favorite of ours, The Afters, for his stem cell blessing event the morning of the transplant, this one would have been ideal.

The Update

Day +11

So Day +11 was relatively calm and optimistic. He had Nurse Dena for the 3rd day in a row and she had such an amazing sense of calm. The doctor's rounds were all encouraging and we saw some slight improvements in the white cells and some inflammatory markers which is an indication that he is past the low point of the transplant and his immune system is rebuilding. Also it could be a sign that the plasma apheresis may be helping.

They were reducing the sedation with hopes that he would awaken and have some awareness but said not to worry if it didn't happen immediately.

Dr. Glass-Half-Full mentioned that if John continued to progress, maybe they could get him back to the transplant unit by the weekend but that we were in rather unchartered conditions so not to worry if he wasn't.

They gave him a 2nd plasma replacement treatment - we are so grateful to the 3.5 people who had to donate plasma in order to give him 7 more units today. 

At the end of the visiting hours though the energy in the air just didn't seem the same as I mentioned above.

Day +12

The morning call had prepared me that it wasn't going to be the same day as Tuesday. When I entered the room, it was more obvious. They were continuing to reduce sedation. He looked uncomfortable and even struggling with the vent tubes at times. He needed more frequent suctioning and the activity in the room was more intense. He was responding when I tickled his feel sometimes but no squeezing of hands or wiggling toes yet. 

During rounds the teams seemed more subdued when entering and even Dr. Half-Glass-Full wasn't conveying his normal confidence. The tone was more matter-of-fact. They were talking things like cytokine storm and engraftment syndrome. These are conditions that we have heard with other sorts of treatments or procedures but didn't expect from an auto SCT. They just keep reminding me that his situation is more uncommon and will require "more patience" and "adjustments day to day based on his response." The good thing is his white cells are continuing to multiply. The other good thing is they are able to manage his vitals and his discomfort by hanging a new bag or injecting more sedative into his IV.

He received 7 more units of plasma, a unit of platelets, Albumin, 2 units of Cryo (a new blood product we hadn't encoutered yet and I'm not sure I spelled it correctly) and more new meds to try to calm him and his system down.

The day felt more exhausting but I am grateful for the peaceful way the last hour has been and the GodWinks to remind me that I'm not in charge, I'm just along for the ride.

B Positive - Day +9 and +10

It is Julia again.  I'll get into John's status in a moment but I wanted to share something that is important to John and me. I called this post B Positive after a nurse a few weeks ago entered John's hospital room on a less that good day, looked at the units of blood she was about to hang for him and she said, "You're B Positive. Thanks to you, that is going to be my motto for today." Today I need this reminder as John continues to receive the gift of life.

Today's PSA

I have had so many people reach out during these tough weeks and ask "What can I do for you? Drop off a meal? Help pack (we are moving in about 2 weeks)? Help with repairs at the old or new house? Run errands?" We appreciate the generosity and caring so much and have taken several of you up on the offers. But this is a really tough thing to answer sometimes when your mind is reeling from the situation and you feel like you are just functioning from the hospital to the house and grateful that you have clean towels in the morning. John's diet has been so greatly restricted so it is hard for people to cook for his renal and nutrapenic meal plans and he has now spent almost 5 of the last 7 weeks in hospitals so I eat a lot of cafeteria food and protein shakes. My normal answer is please just pray for his healing and comfort (and I don't ask for prayers lightly. Faith has been a very important component of this 13 year journey.)

I finally have thought of something that most people can do no matter where they live that would mean more than any of you know. Give the gift of life that so many have given John over the last several months. 

Give blood. Give plasma. Register to be a stem cell match. Consider being an organ donor. Volunteer at a local blood drive.

Due to the agressive nature of John's disease state now, his body has struggled to make enough blood cells and platelets to keep him functioning. He has required several transfusions of blood products each week just to live with the hope that his system will be able to do its own thing after the reset of his stem cell transplant. He is getting 6 units of plasma and already had a few units of platelets just this morning. And they are still considering some whole blood later today depending on the next round of labs.

He also has just started on dialysis in the last month and sees so many people at the dialysis center awaiting the hope of a new kidney. Unfortunately when you are on chemo you won't qualify for a kidney transplant so the boys or I can't even give him one. If only more people would consider organ donation people who need these precious organs may have more hope.

Back to "Be Positive" - John's Status

Now what most of you clicked to find out. John has had a very difficult couple of days. As his fever has continued, his rough patch started Friday and we were very prepared for that. We knew to expect fever, nausea, diahrea, chills, lack of appetite, overall yuck! What we weren't prepared for is a change in his mental state. He started by struggling to find words, but still engaging with his care team, watching Ozark and Shark Tank, walking to the rest room, complaining about his Reds, and helping me with decisions of the house. He was answering the phone and texting. Saturday he was struggling more to speak but was aware when spoken to and he would try to answer and follow basic commands. His temps were more difficult to manage and went over 104 and frequentlly in the 103s. His blood pressure was also difficult to control. By evening he was very unaware and had periods of what they called "rigers" where he would shake uncontrollably. In the middle of the night they had called in the ICU Rapid Response team and Neurology several times each resulting in tests and speculation but few answers.

Sunday he was even further away from us and more of a concern. Finally as Jason was just coming up for a visit, John had a major change that resulted in what they thought was him seizing. The teams again descended on his transplant room and quickly whisked him off to the ICU. By the time we got down to the 2nd floor he was sedated to a state of calm and they had kicked his care into a whole new level of impressive. Now anyone who has been to the Mayo knows it is unlike anything you will ever experience. from the low patient ratios to the fridge in the room stocked with your own snacks (unless you are like John - no Doritos or Snickers), milk and homemade cookies delivered each afterrnoon to the most thorough, caring, first-in-class healthcare providers. I won't post photos because I don't know that John would want that, but he was in the command central of ICU with poles, monitors, and close to a dozen professionals all kicking it into gear to figure out what was going on. 

In ICU they have performed even more scans and tests and at least they are ruling out many of the worst things and they are keeping him comfortable and sedated. They have ruled out a stroke, brain tumor, menangitis, many types of infections, fungus, aneurysm, and blood clots. They don't have the answer yet but they are still hopeful that this is something that will reverse with time, assistance of what they call plasma apheresis (replacement) and a careful balance of therapies. He is on a ventilator for now and under the very careful eyes of an amazing care team.

One of the 6 or 7 doctors who have been in to speak with me today said he is a "glass half full" guy, but I prefer to say he took the "B Positive" pill today too. Since they haven't found the culprit of the fevers, unresponsiveness, tremoring and infection, he feels that means that the most difficult maladies to remedy are ruled out and a recovery is just delayed a bit. Now it is finding therapies to help them resolve this mystery which includes removing all of his plasma and giving him clean donor plasma, controlling his vitals, careful eyes and symptom management. They did this today and plan to again tomorrow while continuing to carefully control his system which is only 10 days old and just learning to heal itself.