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!