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

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

Day 27, September 30, 2026

Day 27

What a month can bring.

Tomorrow, Mark will ring the bell and we will go home (hotel).

All kinds of medical people have been by, getting us ready for discard.

We will return to the hospital everyday until told otherwise.  Friday is a big day also because there is a bone marrow scheduled.

-Susan

Day 25 - Hi From Mark....

 Hi everyone, just a quick post to say thanks to everyone following and Susan keeping up the blog. am starting to feel much better although I still have a way to to. I will be posting more in the future as i feel better - Mark

Day 24 September 27, 2026

Day 24

Mark appetite has increased.  Almost everything only has a hint of concrete taste.

He walking every few hours.

He did test positive for BK and they manage symptoms.

Looks like Thursday for going home to the hotel.

WBC 2.9

CREATINE 164

HEMOGLOBIN 8.3

PLATELETS 28 or 78, I can't read my is own handwriting.

PHOSPHORUS 1.9, SHOULD BE 4.0

He was given Phosphorys.

-Susan

Day 22, September 25, 2026

Day 22

Monitoring every day 

WBC 2.7

HB 8.2

PLATELETS 59

Magnesium 1.8

Potassium 3.8

Mark's regular post heart transplant potassium is 3.8.  Cardiac at MDA would like 4.0.

He is getting more annoyed at interruptions, which is a good sign that he is ready to go home.  It looks like we could go home (hotel) on Thursday.  He is resigned to spending 4 hours a day at MDA getting IV drugs.

- Susan

Day 21, Thursday, September 24, 2026

DAY 21

This is the second day in a row that Mark has felt better.

He received no IV meds today.

He is eating a little better each day, but it is little.  He says food only has a hint of concrete taste, but he has trouble tasting sugar.

He is currently adding salt to his soup.

We found a caregiver at the hospital to hire for private duty.  She shaved his head already.

Personally, I have a big issue when I don't get proper sleep.  It pushes me to the edge, so she's a good find.

-Susan

Day 20, September 23, 2026

Day 20

Creatine 1.64

WBC 3.2

HEMO RBC 8.3

PLATELETS 57

Yesterday, Mark wasn't feeling well.  They are testing him for BK Virus.  Common and not too alarming.  Waiting for the results.

- Susan

Other realities

The hotel has 300 rooms.  They all have cancer patients and their families.

Yesterday evening, the quiet talk was of someone on their last day(s)  of hospice in the hotel.

The logic is that they are too sick to get home even if they live in Houston.

I haven't heard anything this morning and I won't ask.

-Susan

Day 18 1/2

I have no data to post.

Yesterday, the doc said if Mark wanted to go home he could.

The practical answer was to stay in the hospital.

He keeps getting potassium oral and IV.  By my estimation the IV took 7 hours, really slow.

He still gets PRN meds.

And a round trip from hotel to hospital is 1/5 mile.

And he is 6' 3" and that is hard for me to handle alone.

He would still get these things outpatient, but not in so comfortable surroundings.  And he is still exhausted.

-Susan

Page views

An interesting statistic.  Daily page views on the blog average 1900.

That means someone clicked to a unique page 1900 in a day.

- Susan

Day 17, Sunday September 20, 2026

Day 17

Creatine 1.84

It was over 2.0 and that is bad (kidneys)

WBC 3.5

Platelets 46

He sleeps all the time.  Partly because he is sick, but partly because you can't get an uninterrupted night's sleep in a hospital.

He was able to eat 3 big bites of a chicken salad sandwich and said it tasted almost like a chicken salad sandwich.

- Susan

Day 16

Day 16

The WBC will fluctuate as it grows.  

WBC 3.9

Platelets 52

Hemoglobin 7.6, but he had RBC today

Neutrophils 3.2

- Susan

Day 15

Day 15

We heard someone is considering sending him home early next week (Today is Friday). Home is the hotel attached to the hospital. And the time there is estimated at 2 months.  

WBC 5.9

Platelets are 30.

The platelets are the last to come back after transplant.

He was given platelets today.

He has chemo brain that is bothering him, but he did the PT exercises from memory. Go figure.

He is very fatigued.

He falls asleep sitting up, but he did that at home at his desk.

Food tastes are improving.  It was concrete.  Now it is chocolate concrete, vanilla concrete, etc.

-Susan

Daily Routine

Daily Routine 

I stay in the hospital with Mark for the swing shift.

So, he gets his every little need met immediately.

On the other two shifts, he has to deal with it with the staff.

The nursing ratio is 1/3, so he really is well cared for.  And everyone is wonderful.

-Susan 

Hospital vs Hospital

I have been observing procedures at MD Anderson using my past history of other hospitals.

But, it is apples and oranges.

They do not have a menu for diabetics, nor low salt. So of course, I questioned it.

This is a cancer hospital, not a general hospital, so each patient's food is customized to them.  Plus, as you order, you pick and customize it to your liking.  Mark says the food sounds good on the menu on the app, but everything tastes like concrete to him.

We throw out so much food, it bothers me.  You can order a 1/2 order, so that helps.  

They are still fine tuning the food app and have asked for feedback.  (Yes, we have feedback)

-Susan

Day 14

Day 14

WBC 5.4

No signs of GVHD.

Small issues with BP med and anti itch med side effects.  It is probably the BP med, metoprolol.  Past history.  Heart Docs are coming.  It turns him exhausted and all the good necessary things like walking, stop.

Food tastes like concrete.  He has a system where he chews up a small bite and then swallows it like a pill.

And he has lost his voice.

-Susan

Day 13

Day 13

WBC 4.0

Go Danger

- Susan 

Day 12. No more hair

No more hair.

Last night, wispy tassels of Mark's hair started coming out.  One of the nursing assistants shaved his head for him.  No tears,  he's a guy.

He kind of looks like Heisenburg from Braking Bad.

WBC 2.0

-Susan

Day 11 ENGRAPHING

Mark started the engraftment during the night.  The WBC needed to be .1 to know it has happened.

Mark is a .8.  Go donor Danger.

Mark feels much better.  And all the chemo damage will start to heal as the WBC gets higher.

Great Day!!!

-Susan

It's not if, but when

It's not if, but when

Mark has a lung, let's call it an infection.  He had a low fever, cough.  Got an X-ray, urine test and antibiotics.

He's really just exhausted.

It will probably last until the WBC goes up.  4 days ish.

-Susan

Day 10

Day 10

The immune cells could show up soon, but the most common day is 14+.

Mark sleeps a lot.

He not really sick.  It's more like he has a sunburn inside and out.

Days 10-14 are usually bad days.  He's just drinking.  His creatine was  2.1 and they ordered an ultrasound of his kidneys.  Found nothing and he got IV fluids.  It didn't change anything.

Just waiting......

-Susan

Day 8, zero WBC

Day 8

This is a mile milestone day because his immune system is at zero white blood count. It means that Mark's immune system is completely gone and we're waiting for the donor's to graft.

2 days ago he was a .1 WBC and in a few days we hope he will be .1 WBC with the new cells.

Day 7

Mark is in a routine now.  They check everything all the time.  Since he has the heart transplant, they are monitoring it closely too.

The nurses are constantly keeping his homeostasis level.  

Stomach problems from the chemo mess up the electrolytes.

Which messes up his heart rhythm. Which makes the nurse show up.  All while keeping fungus and parasites away.

The nurse ratio is 1 nurse - 3 patients.  That puts 4 nurses in our area at one time.

-Susan

Day 6

The sick came  2 days early for Mark.  Mark is really miserable.  He has chemo burns and rashes.  And symptoms like the stomach flu.  No pain meds.

But he is sitting up and he ate 1/2 of French toast.

His platelets are 17000. So no blood today.  

The history says this sick lasts a week.

7-14 days and they start to look for neutrophils (a type of white blood cells) in the blood and the engraving has begun.

If you want to talk to Mark, the best way is to text him and he will call you when he can.

-Susan

Platelets

Platelets

The family tradition is when someone needs platelets, you go give platelets and then eat at Chili's 

-Susan

Day 6 Feeling bad

Feeling bad

Today, Mark is on pain meds, stomach meds and he told me 3 units of platelets.

He said, you're supposed to have 10,000 platelets and he had 3.  I haven't had time to research this.

He's sleeping a lot.

-Susan

Day 4

Same song, second verse

Day 3

Mark's biggest asset (oddly) is he has been sick for so long, that he knows what to ask, what to take, when etc.

He is doing well.  3 laps around the hospital hall, am & pm.

(When you get 15 laps, you get a prize)

He looked at his hospital papers and his discharge to the hotel is Oct 3.  Bored is way better than sick.

Because he is on this Orca Bio trial, they think he will recover faster.

Mark asked for hot tea.  It's the first time he ever asked for that in 25 years.  Janice Vaughn (Mark's cousin) quipped "maybe the donor". We'll see.

-Susan

Clarification

Yesterday, I posted "Everything is negative and blah"

Clarification, all the c dif tests etc.  came back negative.

He is no longer on the isolation where I had to where a yellow gown.

He is just Blah as in everything tastes like nothing, he bored and worried about days 7-14 being sick 🤢.

-Susan

Day 2, part 2

Everything is negative.  Blah is the word. -Susan

Day 2

Day 2 

Heart PBC

C Diff protocall

It looks like the    

Posaconazole is the culprit.

It's an antifungal and that set of drugs rattles him.

He still feel good, just tired.

I'm watching him eat pizza with a diet Pepsi.  The texture of food is all wrong.  -Susan

It's here

It's here and going in.  The chaplain blessed them first.

ETA now 9:30 pm

ETA now 9:30 pm

The Donor

The donor's job is done.

I named him Danger.

We are so thankful for your compassion for someone you don't even know.

It reaffirms my belief that most  people are good.

-Susan

Full Service Blood

Full Service Blood

They asked Mark if he wanted to have the donor blood blessed.

He said yes.

-Susan 

Transplant ETA

Transplant ETA,

The transplant should take place sometime between now and 8 pm -Susan 

Blood Transport

Blood Transport,

There is a chain of custody of his transplant blood.

It cannot go through the X-ray.   It is a living thing.

It goes from one person to another person.

-Susan

Mark is feeling well

Mark is feeling well and the doc said that was a good sign that he won't feel so sick.

They are also concerned that the chemo and radiation could have hurt his heart since it is a big unknown but it looks fine.  

-Susan

Heart stuff

Heart Stuff

Since Mark is such a unicorn, cardiology came and visited.

Mark made the offhanded comment about how quiet it is with telemetry.

Yeah, they ordered telemetry.  

One of the cardiac guys told Mark, he looked bad on paper.

Mark said it probably took an hour to read his chart.  -Susan

The night before transplant...

Mark is not feeling sick today, but not hungry and very tired.

The room is big enough that there are two TVs.  The big change is the food. You order what you want, when you want and it comes in less than an hour, like Uber Eats. It still has some controls, breakfast ends at 10:30, like McDonald's (or is that 11).  He uses the room tablet to order.

The other big change for Mark is there is no telemetry.  Just Quiet.  And the menu is not salt free. 

Everything is big in Texas.  His room is on the 18th floor.

-Susan

Stem Cell Transplant SCT

Stem Cell Transplant SCT is day zero, but it usually happens late in the evening.  My guess is the blood transport takes all day.  The last step comes from California. -Susan

Day -1 Radiation done, in the room

Both rounds of irradiation are done.  He is in the hospital room.  We walked over a mile in the hospital today.  Mark refused a wheelchair. -Susan

Tropical Storm Edouard

Tropical Storm Edouard is making landfall here.  It's the flooding that will be the biggest problem for Houston.

Supplies are already here. ( You have met me)

We cross from the hotel to hospital via a sky bridge.

Everyone parks in a high rise parking garage.  But, drop off is outside. -Susan

At home

At home

Everything is fine and cared for with the glaring exception of our air conditioning.  It's down for the fourth time and out.  They are replacing it by this weekend.

Rolando, our handyman, has installed an a/c in both Christopher's bedroom and office.  Everyone else is in the mother in law suite and that a/c is working.

Poor Christopher:  the a/c can't be on high because it is too loud, but it's not cold enough to sleep.  And he's worried about the effect on his birds.

-Susan

Donor

The donor's blood has to under 72 hours old.  So they have begun.  I named him Danger.  Good luck to Danger. - Susan 

Day -2

Day -2

Mark has started to feel more sick. 

Today is the final chemo (F).

His creatine is up (kidneys, up is bad).  He is having to force fluids.  -Susan

Today is -3

Today is - 3 (minus three)

Mark has a little nausea and headache.  They have big dog drugs.

The chemo was only an hour. -Susan 

2 Long Days Done...

 2 long days done, Still feeling OK. Will continue tomorrow. - Mark

Length of daily treatment

T chemo, F chemo, antibiotics etc are iv and consecutive.

Yesterday, we planned for 7 hours and it took nine.

Today, is planned for nine hours.

They mix the meds when you are checked in, so there's some wait time there.

Today is the last day of T chemo.

-Susan

The next biggest worry is host vs graph

When he had his heart transplant, the worry was that his body would reject the heart 

In stem cell transplant, it's the new immune system rejecting Mark.  You want some, so the transplant takes, but not to much.

And he now has lost all of his childhood immunizations.  He has zero and they don't start giving them back for a year. -Susan 

First biggest worries

The biggest worries are infection since he has no immune system.  You think Covid or the flu, but it's parasites and fungus that are just everyday stuff for the rest of us that is so dangerous and he has drugs to deal with that right off the bat.  -Susan 

Logistics

Mark started chemo at day -6.  The donor blood has to be under 72 hours old.  The blood has to be collected and fly from wherever is the collection site near the donor's home to California to Orca Bio.  Done what ever they do to it and fly it to Houston.

Notice Mark starts at day -6 and donor starts at day -3.

I named the donor:  Donor Danger Dol***.  So his middle name is Danger.  We can meet Danger after one year.  It is multiple blind.  The doctors and hospital don't know his name either. -Susan

T chemo and F chemo

Thiotepa is chemo that exit through his pores.  We checked into the hotel room next door and took minimal stuff.

Mark has to shower, change sheets, and clothes every six hours for three days.  Housekeeping took it as hasmat and everything he uses gets special individually washed.   They doing sheets and towels, I do personal clothing.  He has to make sure it doesn't irritate his skin.

Fludarabine is not a skin problem.  He should start to feel sick within a week. - Susan

How the days work

The days are as follows:

-4 (Sunday, Aug 30) 2 kinds of chemo

-3 (Monday, Aug 31) continue only one of the chemos

-2 (Tuesday, Sept 1) last day of chemo 

-1 (Wednesday, Sept 2) am total body radiation, 

     pm 2nd total body radiation followed by admitting to the hospital.

Day 0 (Thursday, Sept 3) Transplant

Day 1-30 Hospital 

Day 30 - 60 home (hotel) and go to doctor everyday.

Day 60-100 see doc every other day. 

Day 1-100 have wiggle room.

- Susan

Day -5 Mark made it

Today, Mark got the first chemo for the stem cell transplant.  So it is the day of no return - Susan

Tommorow is Day -6...

 Tomorrow (Friday) is day -6. This is my last regular day. Saturday at 8 starts Chemo. Had a little scare yesterday as they had to do a Toxoplasmosis retest. Then we had to wait thru today to ger the results. I got the results late tonight and after using my professional patient hat, the way the test results look  to me is that the test came back the way we needed. I am sure the nurse will get with me in the morning to confirm. 

Rehab

You know how you have rehab after the hospital?  Well here, they did pre rehab.  Kind of smart to know what your normal baseline is before you try to get back to normal - Susan

This week coming up...

 Today is Day -12. This week coming up will be busy. I have several doctor consultations Monday, ending the day with another bone marrow biopsy. On Wednesday I have a pre-admission visit. Then on Day -5, next Saturday Morning I go in  for 7 hours of Chemo. Then again on Sunday the 30th another long treatment. Two more shorter treatments on Monday and Tuesday, Whole body low radiation on Wednesday. I check in the hospital on the 2nd and they do the transplant on Thursday - Day 0 - September 3 2026.

I am holding my breath hoping that nothing happens to mess up the schedule. It has been a long grind to get to this point, and I am looking forward to getting on the other side of the transplant and into recovery mode.

Things are starting to gear up a little...

 Hi  All.  Just thought I would check in. Susan and I have been living in Groundhog Day for the last couple of weeks. My new Day 0 is now September 3rd.  Since it has been almost 2 months since my last Chemo treatment, my doc put me on an abbreviated treatment last week, I had 3 days of Decidine infusions on the July 31st thru Aug 2nd along with 7 days of Venclexta. This will hold me over until Sept 3rd.

So this week thing are starting to gear up again. On Thursday the 13th, I go back in to repeat several basic tests, including a CT for my sinuses, another chest x-ray, blood, and a follow-up with the doc. I already did another PVT Lung test on July 31st and passed it. The test is good for 40 days, so I don't have to to worry about that for the end of the month.

So other than that, we are doing good.  The big decisions of the day are what to do for food. They have a full restaurant downstairs that offers a buffet every night during the week, so we get that sometimes. We Uber in some food occasionally,  as well as just eat food in the room from the grocery store. We have a full kitchenette with a refrigerator-freezer, microwave and a dishwasher. If we can microwave it, we can eat it.

Needless to say, Susan is on a first name basis with everyone who works in the hotel as well as some of the guests. She can only talk to me for so long, before she has to have live interactions with people. I can stay in the room by myself and be happy, but it is a little harder on her. She has gotten in the pool a few times and that is good. 

So by the end of next week thing should be gearing up pretty good. Thanks for checking in with me. -Mark

New Transplant Day Zero

Hey, more news. Mark's stem cell transplant has been moved: The first likely day is Thursday, September 3. (Day zero) It is just difficulty lining things up. It's not sickness. Because it is so far away, Mark has to have a regular chemo treatment in between.   -Susan

Good News....

I just finished my Pulmonary test. Last time I got a 72. I needed an 80 to get in the trial. Today I got an 85. Yea

Heading to see the Nurse to see what is next. Will keep you posted

Sabbatical for lungs

It looks like the lung medicine is working.  Mark can walk longer distances each day. 

The inhaler medicine is fluticasone propionate and is a corticosteroid. -Susan

Next step with lungs

Mark is taking an inhaler steroid twice a day and walking to strengthen his lungs.

I have been teaching him how to bubble (singing practice technique for strengthening your lungs).

His next lung test is on July 16 (Thursday). - Susan

Clinical trial

The trial is very specific.  Each patient has to have each body part working in a good way.  It makes the data better, so we learn more.

And it makes the FDA happy. -Susan

Timeframe

It looks like ten days of meds for the lungs and then a lung test.  He still has a PICC line and I have to take a class to learn to flush it.  -Susan

Discouraging news...

My Doc called last night. He said the Toxo test was negative that was the good news. He then said the bad news was I did not do well on the Lung tests. He said I only got a 72% on a particular test when the company that does the trial requires an 80%. He said he made a case to make an exception but they declined. 

So everything has been put on hold. The good news is the donor has agreed to hold. My Doc asked about lung problems and I recounted my episode with pneumonia. We are going to meet Monday to see if we can come up with a plan to get my lungs in better condition.

More about the Antibody Test...

Janice asked what the antibody test meant. I tested positive for the Toxoplasmosis antibody. This is a common infection that a standard immune system handles quite well. The positive antibody test means i have had it. The question is when. The second test that we are waiting on will answer whether I have an active infection or that I just had it in the past and it is now gone. If the second test comes back positive, it will need to be treated before I continue. We will see.

Today was port day..

Had 2 surgical procedures today. One took out the port in my chest. During the second one they put in a PICC line in my arm to make infusions in my arm easier

Met with my main Doc today. All my tests are good except I came back with a positive antibody test he did not like. They sent out another blood sample to the Mayo Clinic. Results need to be back before I start Chemo on Sunday. Fingers crossed it is negative.

How the day numbering works...

If you noticed I started the last post with "Day -10". Today is day MInus 10. Right now we are counting down to Day "0". Day 0 is the day I get the Stem Cell Transplant which is July 10th. After that July 11 will be Day 1

Recovery after Transplant is broken down in stages Day 1 to 15, Day 15 to 30, all the way to Day 100. We will elaborate further as we enter that phase.

Another day of tests..

Day -10.  Today was a lighter day of tests. An EKG, PVT (Pulmonary), CT, and Chest Xray. The tests were scheduled to start at 8 and finish by 2pm. The people here are real cooperative and they got me in earlier than my appt times so I was able to get it all done by 10 am. That was nice. 

Tommorow is just one doctor consult in the afternoon, so we get to rest in the morning.

 

And the blood type is...

Mark's blood type is A negative 

The donor's blood type is O positive.

When Mark's new immune system matures, his blood type will change to O+ like the donor. - Susan

And the donor is...

Today, we saw Kate and she gave us some donor demographic information.  The donor is male and 20 years old.

She said males have more stem cells, but females show up to appointments more reliably. - Susan

Susan: Introduction

This is my first post as the wife.  I will post when Mark is unable.

Also, Mark thinks that I will be the human interest side of the transplant.

Testing Day 1...

Day -11.  Today was first day of tests as well as doctor consults. Started with an Echo and then blood. It was a record setting day for me. They took 34 vials of blood. I asked if they were giong to leave any blood for me.

Finished off the day with a bone marrow biopsy. Always such fun. Tommorow more tests.

Made it to Houston...

The plane ride went as scheduled. Had a car service waiting. Made it to Rotary House in time for breakfast.

Neither one of us got much sleep last night. Time for a late morning nap....

Packing up to go....

Susan and I are mostly packed and ready to go Sunday. We have a 6AM plane so that is not fun.

MD Anderson has a full list of tests for next week as well as doctor consultations. They will be checking Heart, Blood, Lungs, and Bone Marrow Biopsy. They are even doing a CT scan. I asked what they are scanning, figuring it would be my back or bone marrow. It turns out they will CT my head so they can check my sinuses to be sure I do not have a cold started. They Truly leave no stone unturned. 

A Slot Date of July 10th has been set...

 I received some great news from Kate at MD Anderson. I have officially been given a slot date of July 10th.

This timeline works well for us, as we already have a flight scheduled for June 28th. Following my discussion with Kate last week regarding the four available donors, she outlined the next steps: I will undergo outpatient testing with results expected by July 3rd. If everything looks good, I will begin the pre-transplant chemotherapy drugs then.

I was surprised to learn that my doctor will be administering the pre-transplant chemotherapy on an outpatient basis. Although I expressed concern about the side effects, Kate assured me that I should be fine. She did note that I will likely feel quite poorly for a while after the stem cell transplant on the 10th. However, a major advantage of the Orca Trial is that it aims for a better outcome with a less intensive chemotherapy regimen beforehand.

They say the date of a stem cell transplant is like a second birthday. Since I had my heart transplant on January 29, 1993, July 10th will mark my third birthday and the official start of "The Double Bonus Round."

Donor Match in Progress...

I called Kate at MD Anderson. She said the good news is they have 4 donors who sent in samples and are in process. As she says it only takes one to match. From the info it looks like it might take a while longer. So I am going to push out the date we leave until the 21st of June. She said to check back next week.

Last day of Treatments This week

Today marks my last treatment for the week. I have been doing well over the last few weeks; I was able to drive myself to work for three days last week, and I drove myself to all of my treatments this week. I am happy to take these small victories.

If everything continues to go well, this should be my final treatment before I head to Houston.

A possible Donor has been found...

I spoke with Kate in Houston last week, and she had some great news. A donor has been located, and samples have been sent to her for testing. She mentioned that it takes about two weeks to verify the match and noted that a backup donor is also available.

Regarding the timeline, Kate suggested mid-June. I have booked my flights to Houston for June 14th. Let’s keep our fingers crossed for a positive outcome.

Link to Orca Bio Press Release

I found a link to a December 2025 press release on the Orca Website. This has more details if you are interested. 

The Stem Cell Transplant Trial...

Initially I was referred to Johns Hopkins and Duke University for evaluation for a stem cell transplant. We went to Johns Hopkins and visited the Doctor. He was very thorough. He said the big problem with that is unusual is they would need to match both me and my transplanted heart. After careful consideration he concluded that I would be better off with just treatments. At Duke we talked to the doctor and he flat said he would kill me if I had the stem cell transplant.

Enter MD Anderson. They said I would be eligible for a current trial. It is called the Orca Trial. This trial has been going for 6 years. I am told it will be the standard of care when it is released.

The Orca trial is better because it uses lighter Chemo at the beginning. it also has a much improved outcomes. My doctor says that they are highly interested in transplant patients. All in all this looks very promising. I have posted more info on the Orca-T trial. on a separate page.

Good News from MD Anderson in Houston!

We made our second trip to MD Anderson in Houston during the last week of April 2026.

My initial evaluation in December 2025 with them was difficult, as my blood levels and general condition were not yet where they needed to be. However, in the interim, my kidney levels have improved, and my heart procedures have been successful.

During this most recent visit, I underwent several tests, including a pulmonary PFT, an Echocardiogram of my heart,, and a Bone Marrow Biopsy. On that Thursday, I met with Dr. "S", who informed us that my results look good and I now qualify for a stem cell transplant. This is the news we were hoping for, and we left the appointment feeling very encouraged.

The team is now beginning the search for a donor. I expect to be in a holding pattern for the next six weeks or so while they work to locate a match.

Fix the heart valves first...

 In March 2026, I had a stint in the hospital. I had previously been diagnosed with severe mitral and tricuspid regurgitation. Basically i had a couple of heart valves leaking. I had been talking to the Structural Heart Team at Norfolk General. They had informed me they had a new procedure which actually place what are little clips at the valve site that help with the leaking. Its called MitraClip and TriClip. They believed It would be beneficial to me to have it done.

 I went into the hospital for a right heart cath. They did the procedure. My pressures were high so they decided to check me into the hospital and work to get the fluid off of me. They put me on IV Diuretics and I lost almost 20 pounds of fluid. 

The Structural hear doctors then did the procedure. It was a success. They were able to reduce my MR from Moderately-Severe to Mild. Basically, they got all the blood to flow more efficiently through my heart going in the right direction. 

When I got out of the hospital I felt much better. With the heart pumping better and the fluid reduction I was able to move much better.

About the Header Picture...

 I was recently reflecting on a family trip we took to Hawaii in the late 70s. At the time, my father worked for a company that represented manufacturers to military commissaries and exchanges. Since they maintained warehouses in Alaska and Hawaii, they held their sales meeting there and we were able to join him.

My parents were avid golfers back then, and I have fond memories of us playing a round together overlooking Pearl Harbor.

 

We also visited the Pearl Harbor National Memorial. My father, who served in the Army, was deeply moved by the experience, as were we all.  

The header photo is a picture of me from years ago during our trip around Oahu. We had stopped at the famous North Shore and spent the afternoon watching the surfers. It was a wonderful day and remains a very fond memory for me.

Test of Email a Post

I am writing to test the automated posting feature. I understand that emailing this address with specific keywords will trigger an automatic post.

This is a test message to confirm the functionality.

First Blog Post

 Welcome to my first blog post. Over the years, I have generally avoided posting online and have never had a Facebook page or other social media presence.

The purpose of this blog is to provide a centralized place to keep those who are interested updated on my current medical condition. I hope this platform makes it easier for Susan and me to share news, rather than managing multiple text threads to keep everyone up to date.

Thank you for your support.