Day 43

Making today, Day 44.

Yesterday was his standard lab and doc visit day.  One that he kind of didn't, but did look forward to.  

It all started on Sunday when he hit a wall.  Trying to ease a body off of steroids is no joke.  Something they lightly agreed to, and yet just continued to monitor him.  On Monday, nodding that yes...the process does make you feel yucky.

He actually feels awful.

If you remember back to Day +5-10 he had a gnarly rash.  One that they thought was just from the radiation.  When soon, they began to realize it was "engraftment" or in his case GVHD.  When you have a bone marrow transplant, it's almost a guarantee that you will show or have some form of gvhd.  It's just kind of the given.  As miserable as he was, the docs said, it's good it went to skin, vs. gut.  And so they prescribed prednisone.  The devils drug as my friend Carmen calls it.  It's such a sharp double edged sword. 

It knocked the rash down, and  fights back to gvhd, but it opens up a monster of other things.

When you have a new system and new white cells, all the little viruses you  had as a child lay dormant. 

Kind of like chicken pox.  They do their thing, and then hide. When you take prednisone, it allows the white cells to kick back and not work, letting the steroid work.  And so little viruses can take you on.  And in some cases take you down. 

Some virus, (the most common in transplant patients) is called CMV. His appeared.  On day about 20. They watched it. They actually looked for it.  One, because it's the most common that pops up. And second, they'd have to pull him off prednisone....gradually....and so they test for it. If you remember, his appeared at like 525, then 535...then 900...to now at like 935.  Our doc says he gets patients with 115k from day one. And so they are taking precaution to it early. 

Both of these tasks have been brutal.  On Sunday he didn't want to get up and out at all.  Which is great if you ask me.  Here was this dude pleading with the docs to get on a boat, cover from the sun and move on in life. Coming and going, tossing his little mask on, taking dogs to the park in the shaded areas and afternoon. 

Trying to feel and live normal.  Because he did feel pretty good....

Hello PREDNISONE.  Hello.......

And good-bye prednisone....

Now, he doesn't want to eat. 

He doesn't want to walk the dogs to the park that would help his spirit.

He's lost 2 lbs.  Which if you see his body, you'd know this is a problem.

When you need to add one more hole to his belt....not good. 

He's nauseated.  He's thrown up.  I have to force feed, and cook things that maybe he'll eat just a little of.

His white counts dropped yesterday.  His virus increased.  His platelets remain the same. 

And so, as of yesterday he was put on another new medicine for anti-virus purposes.  Dr. Farol stating he believes it will knock it down pretty fast, because it's still low.  

However....they are concerned of his weight.  They are concerned of his gut. 

If the nausea (which they can't determine at this point is caused from steroid withdrawl) or if gvhd is in fact doing it's thing to his gut. 

If you don't know what gvhd, it's when the new donor cells are fighting with the small left over remains of Kris' cells.  That's why 100 days is so important. 

So....so important. 

It's all a miracle of how they switch meds, move them around and get the ball rolling to stop. Push. Change. 

Monitor. 

It's all a science. 

Meanwhile, he feels terrible.  Walking to the hospital from parking lot yesterday was a feat.  

And yet, he just does.  Shoulder to shoulder with his mama.  Knowing she's worried, but full of questions.

His doctor, again...sitting with us for as along as we want.  Me asking simple questions. Kris elaborating on just how shitty he feels. His doctor reminding him that 95% of transplant patients end up back in for hydration and med monitoring.  

He said he doesn't want to eat. But doc says eat and drink the highest junk calorie foods you can. 

Our new prescription would land me back at Kaiser close to home where I stand at the counter and sort with the girl working, and watching me cross off 20 prescriptions.  Taking notes of the ones they were half stocked on.  Taking me back there today. The one they were out of is of course the newest one.  Taking 2 in the morning and 2 at night for two weeks.  They had 12 in stock. 

I'll be back there today, or wherever they have the remainder. 

I was questioning why the magnesium prescribed was different from the one I was holding that read..protein. 

She brought the pharmacist over.  Standing there checking off my list and checking it not once, but 4 times.  This girl working was the sweetest most sweeeeetest girl.  Understanding me checking them off and double checking the dose.  Something I've learned is you have to double check the milligrams. 

Human error even in medical/pharmaceutical areas is real.  

Texting Kris who was laying back in the truck, which was running for air.  Said..."Mom, it's totally fine."

I'm on that energy again you guys.  That adrenaline that has pushed me through this river. 

That adrenaline that has helped me pray harder.  Trusting God.  The plan that is in front of me.

I cried alot yesterday when he left.  He makes his way back to Jen.  Their bed.  Their dogs.  Their life.

My hovering still filtering in the air in my empty house. I watered. Prayed hard. 

Called Bill in a bellowing mess.  

He explaining that we have to trust our doctors.  

Me, of course wondering why the fuck we have to have so much worry in our lives. 

Why. 

WHY!?

Why did cancer choose this family. This dude. This mama.  Why. 

I have to believe that of all the other families that have lost their babies. Their birdies. Their kids that once 

hugged their necks, and stood next to them laughing, and carrying on are gone.  I have him.  I can chat with him and help him.  He's here with us.  We can carry on in conversation driving down the 605 about life.  And worry.  And goals. Most important we dream.  We dream and talk out loud so much. 

We share where we'd love to live someday. He dreaming of living out in a country side with wide open spaces for his dogs and animals to roam.  To provide and give Jen what she deserves.  

He dreams of classic cars and getting back into the ocean...which I still fret....

He dreams of going to far away places.  With the friends that encourage him every.single.day.

If there's one thing about Kris, if you know him, is his friends.

That dude has hundreds and hundreds of friends.  And most reach out daily. If not, weekly.

A good group of fishing, spear fishing, surfers, ocean lovers.  Good folk, loving him. 

Through this. 

Loving him. 

It's a beautiful day in southern California.  My prayer warriors, keep on praying.  This CMV virus will be tackled.  I want his steroid withdrawl to hurry and pass.  I want him to gain weight. I want him to eat. 

I want the silly spirit back  

But I will keep my faith. 

And hopefully my strength.  My strength has always pulled me through.

And I really don't even know where it comes from. 

Jen is getting all 4 of her wisdom teeth pulled as I type this blog this morning.  It's gonna be a quiet, still house in Long Beach this weekend.  

And so I will fly around the nest....hovering.  Praying.  Texting.  And hopefully preparing food.

Have a great weekend kids.  

I'm still on that rollercoaster....

"The River Looks Impassible....Until You Put Your Foot Into The Water"

I leave you with this verse.  I stumbled across it this morning while praying.  Thank you Erica for this little black and white book I turn to for hope. 

"I am leaving you with a gift---peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid."  John 14:27

Happy Friday. You've made it through another long week. Some troubled, and some perfect. 

Whatever you've had, remember one thing.  Today is a blessing. 

Today is a gift. Don't take today for granted.  One phone call you guys. 

Don't stress the pity. The little issues that you can't control, especially if caused by another human. 

Smile and let it go. 

Forgiveness and love will get us all through.

And FAITH.  

The most flowing from this mama warrior who is a mess again.  

Big love, big big love and peace to you.

This Mama Warrior Lisa Lynn-