End of an Era

Wheeling out the dialysis system

Sixteen years ago, when I found out that I had Multiple Myeloma, I discovered that my kidneys had been severely damaged. Every version of Multiple Myeloma is a little different. Mine created an abundance of light chain proteins. They are long and skinny but not skinny enough to easily pass through the kidneys. As a result, the filter tubes of the kidneys get clogged and die. My kidneys were only operating at about 15% of their normal efficiency.

For the next 13 years, I babied them, staying well hydrated and staying away from artificial colors, soda, and alcohol. Initially, they recovered slightly eventually getting back to 33% efficiency, but I could never get them any better.  Because I never really had extended periods of remission of the cancer, the kidneys could never recover and gradually worsened. Then 2 ½ years ago I contracted Rotavirus and my kidneys finally gave up. At the time, it looked like I would be tied to a dialysis machine for the rest of my life.

The last dialysis treatment

Then the miracles started. After my extended stay in the hospital in 2022 I found that I was in remission. My doctor only thought it would last a few months. However, to all of our surprise, I am still in complete remission. The MM isn’t gone but it certainly is hiding with no evidence that it will return anytime soon. Then in a routine visit with a cardiologist in January, he suggested that I look into a transplant. This is a concept that we never considered because we were under the impression that I would need to be in remission for five years for this to happen. But the rules had changed and after getting a thumbs up from my oncologist we started the process.

After dozens of tests and meetings, I was finally approved for the transplant in September. We were then off to the races. After Julia was approved to donate her kidney to me, we were able to schedule the operations in November.

For the last two weeks, we have been taking it easy around the house. Justin and Jason were our babysitters around the clock for the first 10 days. We would not have been able to do this without them.  We are slowly getting better. Julia has had more issues than I have probably because they had to make 8 incisions due to scar tissue. She has good days and bad days. I have been far luckier as I only had one incision and am a little better each day.

I have been getting blood tests three times a week as they adjust my anti-rejection meds. Immediately after the surgery, my hemoglobin dropped significantly, and I had to get a transfusion eventually. However, today my hemoglobin was up for the third straight test. The kidney seems to like its new surroundings and is helping the body create more blood. Things are definitely looking up.

So today was the official end to my dialysis adventure as US Renal picked up their equipment and returned it to the warehouse. Not sure I would have made it this far if I had to do my dialysis in-center. The ability to do it at home was a Godsend. Julia was more than my nurse, she was my rock. And then on top of it all, she gave me a kidney. How lucky am I?

Kidneys 101

Since it was discovered that I had Multiple Myeloma 15 years ago I have been obsessed with my kidneys. When I was first diagnosed my kidneys were functioning at only 20% of their capabilities. After chemotherapy for the cancer, my kidneys responded and improved to about 40% which is good enough to survive.

For years I babied them drinking a gallon of water every day and staying away from foods and liquids that might harm them. Despite this care, they continued to deteriorate due to the onslaught of cancer and chemo. I didn’t have kidney cancer, but the Myeloma created proteins that damaged the kidneys further.

Finally, the kidneys got to the point that I needed to go on dialysis.  They still worked but not enough to keep me alive. For the last 2 ½ years I have been tied to a machine to keep me going. First, it was at the hospital, then at a dialysis center, then the hospital, then back to a dialysis center, and finally home with Julia being my nurse and doing all of the work necessary to keep my blood clean.

When all of this started, I was not very smart about my kidneys. I was like most people and just took them for granted. All I knew about them was that they helped me urinate. Boy, was I underestimating their value to the body. Aside from passing liquid through my body, they have several other functions that are needed to keep us healthy.

The kidneys perform the following functions:

• Remove waste products from the body
• Remove drugs from the body
• Balance the body's fluids
• Release hormones that regulate blood pressure
• Produce an active form of vitamin D that promotes strong, healthy bones
• Control the production of red blood cells

I currently do dialysis four times each week.  It takes care of three of those functions in that it removes drugs and waste products and takes off about four to five pounds of liquid each session. However, it doesn’t do the rest. I have to get injections of the drug Retacrit weekly to help increase my hemoglobin (red blood cells). 

I have to be careful of what I am eating so I do not overload on phosphorus and potassium because dialysis doesn’t handle those very well. As a result, I stay away from dairy, nuts, and nut products like peanut butter, whole grains, bananas, tomatoes, beans, chocolate, oranges and a boatload of other items.  One of the first things I am going to indulge myself in will be a banana split as virtually everything in it is on my “do not consume” list.

I am down to five dialysis treatments before my lovely wife gives me one of her kidneys. One of the things that we found out during this journey is that the body does just fine with only one kidney. This marvelous organ is a wonder. Even though Julia will only have one kidney, there is only a 1% chance that she will run into any problems in the future.

Take care of yourself and take the advice that I have been preaching since I started this blog 15 years ago – get an annual physical. Without my physical at that time, I likely would have had a heart attack because my potassium was so high due to the kidney failure from the cancer. Take care of your kidneys. Stay hydrated.

This will be my last blog until after the operation on November 19th. Be good and keep the prayers coming. Maybe we can get together for a banana split when we’re all healed up.

Six Degrees of Kevin Bacon

There is a saying in Hollywood that everyone is tied to Kevin Bacon. More specifically, they are attached by six degrees of connection. In other words, A knows B and B knows C and C knows D. You do this six times and everybody has a connection to everybody. Assume everyone knows 45 unique individuals. If you do this six times, you are connected to over 8,000,000,000 people which is the world population. To give you a real world set of connections I am six degrees from Kevin Bacon. I know my wife of course and she is friends with Fortune Feimster (the comedian and actress.) Fortune has acted with Arnold Schwarzenegger in the TV show, FUBAR. Arnold has acted with Colleen Camp (a long time character actress) in the movie, Last Action Hero. She, in turn acted with Kevin Bacon in the movie, Trapped. Try this yourself and see who you are connected to.

Along this same line of connecting things is we all have a huge number of thoughts every day. Not sure you do this but every day, I can start off with one thought that takes me to another thought and then another thought. Eventually you get to a completely different thought that on the surface has nothing to do with the first.  This is where I tie this to the Kevin Bacon thought.

You are probably thinking I’m crazy but this is where I tie it all together. Not sure where this labyrinth got started but somehow, I eventually landed on the old TV show, “Queen for a Day.” I recently saw a picture of Justin riding Rollie and Fran’s (in-laws) garden tractor when he was about five. This got me thinking about Fran and how she used to love watching the Game Show channel and game shows that were 40 to 50 years old. I then went through those in my mind and I eventually landed on Queen for a Day. I am sure that very few people reading this are familiar with this show. It started as a radio show in 1945 and ran until 1957and was on TV from 1956 until 1964. The premise was that four women down on their luck would come on the show and tell their story.

From Wikipedia, “The interview(s) would climax with Bailey (the host) asking the contestant what she needed most and why she wanted to win the title of Queen for a Day. Often the request was for medical care or therapeutic equipment to help a chronically ill child, or might be for a hearing aid, a new washing machine, or a refrigerator. Many women broke down sobbing as they described their plights.”

After all four pleaded their case, the audience would applaud each. The contestant with the loudest applause would be declared the winner. They would win several prizes including whatever it was they had asked for.  I would watch this during the summers that I was home from school and found it interesting.

Again, I’m sure you are questioning my thought process here but I feel like I have won my own “King for a Life.” No prizes here except for extended life. This week I found out that I am officially on the list to get Julia’s kidney. I still have a few tests to confirm I am still healthy on November 6. As long as those are good and we both stay healthy, we will have our operations on November 19. I have come so far it is hard for me to realize that I am this close to a more normal life. It has been 15 years since I have been on either chemotherapy or dialysis. I look forward to this new freedom. As of today, I only have 20 remaining dialysis sessions scheduled. Thank you all for your many prayers. They have kept me moving forward.

Life Is Filled with Highs and Lows

It was 1961, I was 8 years old and in my first pennant race. The Cincinnati Reds were battling the Los Angeles Dodgers for the top spot in the National League. My dad would give me daily updates as the season wound down. This was back in the old days when there were just two teams that made the playoffs. The team that won the National League pennant would play the American League champion. Eventually, the Reds held off the Dodgers and would face the Yankees in the World Series.

Unlike today when World Series games are held at night to increase TV viewership, in 1961 all the games were held during the day. As a result, if you were the average 8-year-old kid, you were not going to be able to see much of the World Series since you were stuck in spelling class.  However, I was a lucky third grader as my teacher must have been a Reds fan and rolled in the black and white TV that we normally used for documentaries and turned on the game. That is when my love of baseball became a reality.

The baseball season is much like life. It has its ups and downs. Teams can go on winning streaks, but they also hit bumps in the road. Injuries happen and teams can go into a nosedive until their star comes back. The Reds had some bumps that year but still pulled through it in the end up until they ran into the Yankees in the Series. The Yankees had Roger Maris (who broke Babe Ruths home run record that year), Mickey Mantle, Whitey Ford and the irresistible Yogi Bera. It was a great year for the Reds, but the Yankees were just too good and the Reds lost in five games. It would be nine years until the Reds won another pennant. More ups and downs.

My life has been filled with its share of ups and downs but when you live to be 71 years old, you are bound to have those. Having lost both of my parents were tough times. Meeting the love of my life, Julia, was one of my great peaks. Having two wonderful children were also huge highs. Watching them become the fine men that they have become made those highs even greater.

I was a very healthy person as I entered my 50’s. Still had my tonsils, my wisdom teeth and my appendix. Then I had the shock of my life when I found out I had Multiple Myeloma, a cancer of the bone marrow. My outlook was not good as people would typically live just two years at that time with this horrible disease. I was certain I would not live to see 60, the same age that my mother died. I then started a series of chemotherapies. They would work for a while and then stop. More ups and downs.  Then a new chemo would come out and I would have new life.

This happened time and time again. Until, that is, when I ran out of new chemos. It looked like I had a couple months to live. This was the greatest low of my life. In tears, I begged my oncologist to somehow help me.  It was time for a Hail Mary with a second stem cell transplant. In the meantime, I lost my kidneys and I had to start dialysis. After suffering through four plus months in the hospital and having problem after problem and almost giving up a miracle happened.  I was suddenly in remission, a new high, one I had not experienced in the previous 13 years of fighting this disease.

The highs have continued, and I find myself in my own personal World Series. On the way up to Sedona for Jason’s wedding I received a call telling me that I had been approved by the Mayo Clinic to receive a kidney transplant. That started a weekend that was completed with Jason and Erin’s beautiful wedding. And the highs just continue.

Don’t ever get too down when you hit a low because the good times are around the corner. In 1975, I finally got to enjoy the first World Series win the Reds experienced in my lifetime. Just stick with it. The highs will come and you will have your own World Series.

The Miracles Continue

I have always been a fan of medical shows on television. You can go all the way back to “Marcus Welby, M.D.” and “Medical Center”. Then there was “St. Elsewhere,” “E.R.” and “Chicago Hope” in the ‘80s and ‘90s.  More recently “The Resident,” “The Good Doctor,” “New Amsterdam” and “Chicago Med.”  Of course, my all-time favorite was “House.” “House” was a true curmudgeon. Still, he was brilliant, solving disease mysteries that no one else could. I truly believe that I am smarter today because of these medical shows.  When I get my blood tests back, I feel informed because of what I have seen on TV.

Thank goodness I have gained this knowledge because I have had enough tests these last two months to sink a battleship as I get ready to hopefully receive a kidney transplant.  So far this month I have had the following: CT Abdomen Pelvis without IV Contrast, NM Cardiac Perfusion Rest and Stress Spect, DX Chest Anterior Posterior or Posterior Anterior and Lateral X-Ray, 6 Minute Stress Walk, ECG, Urinalysis with Microscopic, Echo Transthoracic (TTE), Abdomen MRI, Colonoscopy plus 16 vials of blood that turned into 40 results. Don’t feel bad if you don’t understand most of this. I did all of those tests and still don’t understand it all. Julia had her own series of donor tests.

In addition, we each had a series of meetings to speak to those on the transplant team - a social worker, surgeon, doctors from Infectious Disease, Hematology, Nephrology, Cardiology, and a coordinator Physician’s Assistant.  There have been meetings with the National Kidney Foundation to help us find donors and caregiving training. Unless I can use Julia’s kidney, Julia will have to care for me and I will care for her.

The process of receiving a kidney varies. There is the most traditional path of receiving a kidney from a deceased individual. This can take an extended wait time and typically lasts about a third of the time of a live organ. It could take a decade to get such a kidney. Second, there is the process of receiving a kidney donated directly from a relative or acquaintance. Lastly, there is the possibility of getting a kidney from someone that you don’t know in an exchange of kidneys – each recipient secures a donor who donates to someone in exchange for a living match.  This is the type that we will likely pursue if Julia and I are not a good enough match.

Julia has agreed to give me one of her kidneys. If we are not a good match due to factors other than our blood types, she could donate a kidney to someone else that is waiting for one. For this person to receive a kidney, they also have someone willing to donate a kidney. Chances are that there may need to be several people in this chain. The Mayo Clinic is well known for its ability to create these chains and matches. After a match is found, surgery will be scheduled but likely at different times.

Julia has gone through her own set of tests and learned that she has been accepted as a donor. If she wasn’t accepted, I would have had to go to plan B.  Plan B is the process of finding another person to donate. Amazingly, I have a few individuals that have volunteered to go through the process. It is amazing having support like this. I didn’t even have to ask. They just generously volunteered to be tested as a donor. Luckily, we will not have to go this route.

There are certain criteria for finding a good match between the donor and the recipient.  They are as follows:

1. 
   The same tissue type—aside from identical twins, no 2 people have the exact same tissue type, though a match is considered the “same” if tissues match 12 certain protein markers.
2. Compatible blood type—certain blood types are compatible, meaning their antibodies won’t attack each other. An antibody is a blood protein formed when the body recognizes another substance as harmful.
3. Negative serum crossmatch tests—this series of blood tests looks at the reaction between a kidney donor’s and a transplant recipient’s blood or organs. Negative test results mean there are no antibodies from the recipient’s blood that would destroy the donor’s.

Should I get lucky enough for all of this to happen, I will spend a few days in the hospital after the surgery. Julia will spend a night if all goes well. We will then have to take it easy for a couple weeks and should be back to normal in three months. I will be on a regimen of medications for life to keep from rejecting the organ, but I will no longer be tethered to dialysis many times a week. Through the years of battling Multiple Myeloma, I knew that my kidneys would eventually give out. Fifteen years ago, there was no option for a kidney transplant because of Myeloma. Now due to the remarkable recovery from my time in the hospital in 2022 and medical advancements, it is possible and even recommended by my medical team.

At this point, all looks well with just one procedure outstanding. We will likely know sometime in early September if we can move forward. The miracles continue!

Experiencing Life

On the latest reincarnation of Star Trek, Star Trek: Strange New Worlds, we go back in time to before James T. Kirk was the captain of the Enterprise.  Christopher Pike is Kirk’s predecessor and sits in the captain’s chair.  In an early episode, Pike is having a conversation with Mr. Spock and states, “You can’t just live life, you have to experience it.” That really struck home with me.

Initially because of Covid and then leaving the hospital with a weakened immune system I pretty much imprisoned myself in our home. It was just too risky to be out in public. Certainly not the way you want to live your life, but I just could not afford to get sick.

After spending four months in the hospital and three weeks in a rehab facility, the last thing I wanted to do was end up back in the hospital. Sadly, despite my precautions, I made two weeklong trips back to the Mayo Hospital. That was the end of 2022. Boy, how things have changed.

With the flexibility that doing dialysis at home gives you, we can pretty much set our schedule as we wish. We slowly started getting ourselves out of the house. We began by just taking 45-minute drives around the area. Next was occasionally going to restaurants and eating on their patios. Then at the beginning of this year, we would go to a movie after my weekly appointments at the Mayo for blood tests. You would be surprised how empty theaters are on Wednesdays at one in the afternoon.

We have even started to go to supermarkets and Costco. We do wear masks when we do that. Of course, we get looks from people wondering why we do it. A few weeks ago, there was a little girl in a shopping cart with her mom that hid when she saw me. I’m not Godzilla, but I think she might have thought so.

Another big step was getting behind the wheel of a car. After I left the hospital, I just wasn’t ready to drive until a few months ago.  We got up early one Sunday morning to go to breakfast and I drove us there. Its like riding a bicycle, you just never forget. Its amazing what that did for me. For the first time, I felt a little more self sufficient. I now walk three to four miles a day. When I left the hospital, I needed a walker to get around. Now I am free of all that.

We are now planning a vacation to Florida later in the year. We have our reservations set but we still need to find where I can do dialysis while we are there. We will be meeting with the social worker at the dialysis center to get that set up. It’s been five years since we went on a vacation, and I can’t wait.

You might have noticed the word “we” a lot in this entry to my blog.  I think there is something that happens to you when you almost die.  It’s like I have new life and I appreciate everything more.  I always appreciated everything that Julia brings to the table but that has kicked into a new level.  Not only has she become my dialysis nurse sticking me with monster needles four times a week, she is going to make one of her kidneys available to me. How was I so lucky to find this amazing woman?

Today, she started the rigorous testing that has to be done before you can participate in an organ transplant.  She is going to give up a kidney if she and I pass all of the Mayo’s tests. I start my testing July 1 and have to get approved by a committee to see if I am a good candidate.  It is a bit of a long shot because of my cancer and all of the transfusions I had to have over the last two years. Apparently, I might have picked up too many antibodies from the transfusions to be able to find a match.

I have already been given one miracle by God to keep me cancer free for two years, we’ll see if He has another one up his sleeve.

Do you Believe in Miracles?

Do miracles really happen or is it just coincidence? If you are a Georgia football fan and you prayed that OSU missed a game winning kick, did your prayers have anything to do with that or were you just lucky? We pray all the time for many things. Since I have been sick, people from several countries and religions have prayed to their God to help me get better.  Did those help? You tell me.

Late last winter, the 14th chemo I had been on quickly lost its healing power. This has happened so many times before I have almost become immune to it. No tears, just the reality that eventually my time will be up.  There had always been one more treatment option that I could try but there were now none. To give you an idea how bad it had gotten my Lambda Free Light Chain proteins had increased exponentially. A healthy person has light chains around 2. I had been able to keep mine under 60 during my journey. Over the course of two months, they increased from 100 to 600 to almost 1,500. I likely had two to three months to live.

When I initially found out that I had Multiple Myeloma, the standard protocol was to have a stem cell transplant.  The procedure would begin with being bombarded with a significant amount of chemotherapy that would effectively destroy virtually all of my red blood cells, platelets and to an extent my white cells. This would reset my bone marrow and destroy the cancer cells. Preceding the transplant, stem cells are extracted from my blood to be used later after the high-dose chemo.  When the cells are extracted, there is enough removed for two transplants just in case, but it is rare for a person to have two transplants. However, a second transplant was my only hope for survival.

The stem cells are then frozen with a life expectancy of roughly seven years.  This happened 13 years ago. The likelihood that the cells would still be viable was not great. The fact that they were still usable was the first miracle.  It seems I would have a chance.

Easier said than done. When you wipe out all of your defenses, there is significant risk of other diseases even though you are in a sterile environment in the hospital. Over the course of the next several weeks I experienced a cytokine storm, which is highly rare with an Autologous Stem Cell Transplant. A cytokine storm is a cascade of exaggerated immune responses that can cause serious problems. It is not considered a disease in itself, but rather a serious medical issue that can happen because of several underlying issues. Commonly, this means an excessive number of cytokines are released, which create high levels of inflammation in the area of the body being flooded—so much inflammation, even, that it can be fatal. In my case, I had extremely high fevers, was seizing and non-responsive. I was then heavily sedated and put on a ventilator for six days to help my body heal.

On the heels of that, CMV (Cytomegalovirus) was next. It is a virus we all have but usually doesn’t surface unless we are severely immune compromised. At the same time, West Nile Virus was also found. This is normally contracted through a bite from a mosquito that is infected.  Not to be outdone the the Valley Fever that I had suffered through six years before, resurfaced creating a cocci-pneumonia condition that was life-threatening.  I had so many things wrong with me the doctors struggled to discover what was causing it.

I would eventually spend 101 days in the hospital only to leave for four weeks, just enough time to contract sepsis from either a UTI or the PIC line that supports my TPN (IV nutrition).  I was back in the hospital for two weeks. Then home for six weeks and making great progress until contracting parainfluenza that sent us back to Mayo for another week. Luckily these were short stays, but it just seemed like I just couldn’t’ get healthy.  

The good news is that I have been out of the hospital for nine weeks and feeling good. This week I graduated from home physical therapy and have been able to walk mainly with the assistance of a cane now. I accomplished walking 620 ft in a session. We are starting to experiment with some bites of solid food each week. My white blood cells and platelets are holding their own pretty well. The Myeloma isn’t active yet, and we are hopeful that the need for blood transfusions will slow soon.   

The fact that my 69-year-old body survived all of this is nothing short of a miracle.  I just don’t think I could have survived without interventions by Julia when needed and the prayers of dozens of people.  To answer the original question, yes, I believe in miracles, and I thank all of you that helped me get there with your prayers too.

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