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One of the things I've noticed during this journey is post traumatic stress syndrome/symptoms- Whatever it's called, it's real.

It happens to him and it happens to me.  I never really paid too much attention in the beginning, because what was important at the time, was stem growth, and counts.  

Moving forward, and being a part of support groups, and forums, you soon figure out that things can happen in a split second.  One call.  One doctor visit.  One lab draw. 

And so, each time we've made our way back to lab/doc day, I see a pattern. The pattern seems unfair, yet familiar.  It's like walking into a dark alley at night.  I try to encourage and push him along as we load the familiar items into the car.  Puke bag. Mom bag. Water jug. Sweatshirt. Kris. Lisa.

Down the road we go, as I can feel his energy.  Most always feeling the same as me, only I am sure ten times worse. 

As we arrive, choosing a new parking lot, we'd try to make light of the surroundings and most important, of the day. I am by no means a Hollywood lover, so as I navigate every foot step making sure I don't step on spit, gum, or whatever lines the street of Sunset and Vermont. I am a freak, we all know that....so even parking creeps under my skin.  We also play dodge ball with the Church Of Scientology wierdo's that almost chase people down trying to hand them a flyer in their penguin looking tuxedos.  Women wearing the same.  

It's not even funny at that corner of Vermont & Sunset Blvd.  Children's Hospital a short distance from Kaiser keeping things in real perspective.  Mixed with transients, sadly, mentally ill. Mixed with penguin looking flyer slingin' folks, mixed with doctors, nurses, patients, families pulling their little totes behind them trying to grab the bus, as the bus omits that stench into the air.  There's a hustle feel there.

I guess that distraction is good.  As we walked into the elevator area, they were pulling a young lady out on a stretcher.  EMT with a bald girl in the fight.  We'd never know what was going on, just that it surely didn't look good, or peaceful.  All we could do is offer smiles.  Both jittery in our own groove.

Arriving just in time.  Our doctor on time, calling us back.

Her always loving demeanor the minute she sees him.  If there's one thing in this life, it's the love someone shows your child.  As a grown adult, I can see his dimple shine through as she literally hugs him and holds him exclaiming..."Oh my Kristopherrrrrr"-  How are you honey....and so so so much love.

Then a huge mama hug for me.  

We'd sit in the room with her for close to an hour.  Her love overfloweth.  Going over meds. The infection.  The hospital stay.  Her strong opinion to him that his mom made the best decision of having him transferred to Sunset.  He'd smile at her. Not really looking at me, because the wound is still new and fresh of that shitty stay.  He's healing. 

She'd start to load his counts.  One of the main reasons always for the visit.  

All recovered counts.  

Although he's almost 5 months old. (Inside) 

His platelets were at 38 at one point- Yesterday, 188

WBC 10.7

RBC 3.61

HGB 11.00

He only weighed in at 126 lbs.  Making him cringe.  The only noticeable difference I see, is him pulling his pants up the entire time we walk.  His belt at the last hole, and he doesn't want to pop another hole.

Can't blame him.

We'd leave her with more hugs.  A print out for me.  Future appointment with labs,and chest x-ray next week.  Along with a game plan.  She listens to me with meds.  It's something I can't describe, but my gut watches, and see's this pattern.  My concern of not being on chemo right now because it just scares me.  Yet the minute he gets on chemo his platelets drop.  And taste buds drop.  Meaning he won't eat again, and 126 lbs isn't good.  Yet my biggest concern is cancer coming back.  Yet her reply is he has GVHD.  And when a person is in this early phase of transplant and HAS GVHD- It's declaring the donor cells have taken on a war.  Although it's not easy, and causes lots of grief, it's a good thing.

For now. 

Later in life, it's not.  There's a difference in Acute, and Chronic. 

We'd decide to hold off for now.  Let him recover a little more.  Let his body take on some calories.  Along with nutrients. 

We'll start back up on chemo, and possibly more steroids.  Something he's strongly against. 

He's been off Sirulimus for over a week.  Good thing, his body isn't showing any signs of problems.

He has GVHD in the mouth, stomach (we think it's getting better)-

He had a pep in his step on the way out of there, down from that 8th floor, to the parking garage we'd go.  I can't explain or describe what it feels like to leave there with a good tone.  Answers, and love. 

As we pulled away and out of that structure, I rubbed his back.  Affirming that he's gonna get through it.  We both will.  That nightmare week was yet another part of this chapter.  Lessons learned, yet not worth digging up dirt.  It's life.  It's not something anyone deserved, or asked for. 

Thank God he's alive. Thank God he has a doctor that told him "we all watch you Kris" (meaning the transplant team)- Thank God he has a family that roots behind him.  And a Mom that albeit tired, and worn down, she's not willing to ever toss the towel in.  Thank God his stems are still trying hard to grow and take out the Kris cells.

Thank God he has insurance, and a Mom that continues to navigate through mounds of paperwork and disability forms.  

Thank God he has a dad that understands my need to go to appointments for answers.  Never declining my need to search for answers.  

Thank God for friends and family like you that offer him support while he's trying to get back in life.  And trying so hard to just live normal. 

Thank God for Jen that serves him like a king and loves him during the hard days.  Puke, shit, tears, and a skinny body.  She loves him.  

Thank God for her parents that love him every single day.

He will kill me with this picture, but comes to show you how exhausted and worked up he gets.

Solid traffic all.the.way.home....and when mom plays classical music....well.............

Today is a beautiful day. It's interesting when all is good in the world, how a mom can sit down for a breather and look around. 

Most always counting blessings.  

Even when I look at some bills that haven't been paid at home, simply because I forgot.  And so I mail them late.  Or a lawn and flowers that are thriving because I stop to make the time to keep that going.

I'm thankful. 

For today.

Much love to you all,

This Mama Lisa

ps.  Our weekend was full of peace.  Love. Happiness.

With our babies home, our friends stopping by unplanned, and yet turned out to be the best plan.