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

Day 34, October 7

Today, Mark said he feels like a human.

His labs are good and they let him have the day off.

He looks so different, his computer wouldn't let him in without the password.😂😁😷

His current blood type is ABSC.  It's a mixture of DNA until Danger's immune system takes over. (I named the donor Danger)

It's called chimerism.  If you want to Google it.

-Susan 

 

Day 31 post hospital drugs

Day 31. Post hospital drugs

For you medical people:

MEPRON

CRESEMBA

PREVYMIS

RAPAMUNE

CellCept

ZYLOPRIM

ACTIGALL

VALTREX

ADVAR

BUMEX

METOPROLOL

N/V/D drugs

Minerals and electrolytes 

ULTRAM

DESYREL

hasn't used

-Susan

Day 31 labs

Day 31. October 4, 2026

Labs

HEMO 8.3

WBC 5.9

PLATELETS 108

CREATINE 1.15. Low is good.  This is the lowest number Mark can remember.

Walking

Walking

Mark is walking, but he needs to sit and rest.  So we have a wheel chair.

But, since I am 5'4" and he is 6'3", he gets away from me.  Down hill and up hill were both an event.

So we rented an electric wheelchair.  $300 month.  It's not a scooter, but a wheelchair.  It fits in tiny spaces.  And when he can walk, I'll drive the wheel chair.

Learning curve:  if you hit the back wall of the elevator with the wheel chair, the chair shuts off and you restart.

As of this morning, Mark has not driven it yet.  As soon as his IV is thorough, he will, about 2 hours 

-Susan

Day 31, October 4

Day 31

We have a new routine.

We go to the hospital every morning.  They take blood and then give him an IV of magnesium.  This take two hours.

If he needs other IV meds, he get them then.

If he needs blood products, also then, but the time increases to 6 hours.

-Susan

Day 28, October 1, 2026

Day 28

Mark rang the bell.

We went home (to the hotel).

Mark is currently going through his drugs to wrap his head around it.

This is a place/time where the patient can fail.  Every drug has to be individually accounted for:  the insurance won't cover some and will cover others, he took 1 pill 4 weeks ago and started again today because we just were discharged. The pharmacist came every day and extra to tell us about the meds, so it is definitely a patient problem.  Insurance uniformity would help, but each patient is still an individual.

And we are used to this drug dance and still you don't want to make a mistake.

Yes, I am going behind him with a checklist chart.  It also has skin meds, shower, lotion and check for HVGD, etc

-Susan