Day 64 November 3, 2026

Day 64

I don't want to call the last few days a set back because it is just staying the course.

Mark has not been eating.  (And his eating is in our pre nup).  He is down to 200 pounds. At a certain point, they give medicine.  It worked fast.  He woke me at 5 am and we shared a snack.

He was dizzy yesterday and came close to a fall.  2 nursing assistants,  a door and me with the electric wheelchair were right there.  Even at 200 pounds his 6'3" body would knock us down.

What is happening is the two immune systems are killing each other's red blood cells.  This is because there are 2 blood types.  It's expected. Go Danger, Go 

The trifecta was Friday.  Our family business website is down and all the workers are using the phone and paper and pencil.  (I think they have other ways of communicating as well). The employees are physically located in 5 different states to boot. And the problem is still going on today (Tuesday).

Susan

Day 57 October 27, 2026 Tuesday

Day 57

Chimera is when a person has more than one DNA.  It happens in rare circumstances in humans.

In Stem Cell Transplant, it's what they are looking for.  If they find Danger's (the donor's) DNA in Mark's blood, that is a big milestone to pass.

Yesterday, they said 100% was the donor's.

During the transition, they check his blood type every three days.  Yesterday, Mark was given blood, type O neg. Mark's original blood type was A-, but since the transplant it has been multiple different types that are not the ones we know.  The donor is O+.

-Susan 

Day 56 October 26, 2026 Monday

Day 56

A small set back.

One of the signs of GVHD is changes in the eye.  Mark saw floaters and flashing lights.  The next morning we were in with the optamolagist. (Calling her an optamolagist is like calling Michael Phelps a swimmer).  They prefer doing their work in their offices rather than the ER because they have so many specialized pieces of equipment.

End of story:  No GVHD, Mark is just getting older.

-Susan

Day 51, October 21, 2026

Day 51, October 21, 2026

Knock on wood.

Mark is doing so well.

He sees medical twice a week, once a week with the doc.  Last Monday he had blood because he was off for three days and they knew he would need it before then.

We are just holding our breath for no GVHD.

WBC 5.3

HEMO 8.2

PLATELETS 106

POTASSIUM 4.1

CREATINE 1.6

They told Mark he was unique.  

I looked up chimerism in transplants and it is quite interesting.  They have found recipient cells on donor hearts.  And the Tavr valve is usually either pig or cow modified with human DNA. That puts the count at 4.  You could get DNA from a blood transfusion in the past, but now it is removed/destroyed now. (I could be wrong about any of this)

Anyway, they are looking for Danger's (the donor) 🧬 DNA.

Mark and I will look very different when we go home.  My black hair is white now and Mark has none.

Susan

Day 46 October 16, 2026

Day 46

I asked the doc why his procedure seemed different for Mark. He was getting days when his reputation says he sees everyone, every day.  He told me it was not his change, but Mark being on the Orka trial.  It is gentler and has a lower GVHD.

So on Thursday, they let him off until Monday.

My worry was how sick does Mark get before I talk him to the cancer ER.  Well, way sicker than he is.  A little nausea isn't even noticeable.

Everyday, Mark eats more, walks more, going over accounts on the computer.

He finally had to put on a size smaller pants and they are still big.

For medical people, they removed sodium bicarbonate.  Kept CellCept.  And removed the bag of fluid during IV visits because of the Bumax.

They did a bone marrow test and found no blasts.

They are waiting for the results from the chimera test.  They are looking for Danger's (the donor) DNA.  That will tell them Mark's progress.

- Susan

Day 42, October 14, 2026

Day 42

Everything is going very well.  Knock on wood.

The doc let Mark have two days off in a row.  The nurses say our doc never goes more than a day to be seen.  I will have to ask him tomorrow why.

Everyday, Mark is walking farther and eating more.  Slowly, medicines have been disappearing.  The ones that have gone are the ones to fix you from chemo and radiation, as it heals.

The big question remains; What is the stem cell transplant going to do to the heart transplant?  Hopefully, nothing.

Susan

Day 36 October 9, 2026. The biggest hurdle

Day 36

The biggest hurdle yet to come is GVHD and the unknown outcome of the donor heart.

It could be nothing.

It could be something big.

Mark is already doing well enough to go every other day to the hospital.

He is 1/4 normal.  Eating 1/4 the amount, walking 1/4 the amount, 1/4 of doing work on his computer.

Sleeping through the night.

-Susan