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