Day 18

It's so strange to type that. For some reason in the beginning days I felt like day 20 or 30 or even 10 was like ions away.
I've worked extremely hard on his room. And we doing so, keeping in mind dust. Mold. Bedding. Comfort. Darkness.
This morning we worked on little details of his tv and cable.
Kali packed her bags, and freshly washed linens to head home. My sadness wasn't near as it was last week because all I could think of is her driving home in this storm. The typical shift in life. One worry to the other. As I type this I await her text "Made it".

On my drive to the hospital today I passed 4 accidents. Not sure why people still drive like assholes when it's clear the roads aren't in good conditions and the water pools on each side, and Mr. Racer guy in his little Fiat swings in and out...slamming the brakes or hydroplaning creating havoc for all.
Rain+California Drivers = Scary.
Major grateful-ness to our police, ambulance and paramedics. Seriously.

Today's topic when I arrived was how come he was never told about the 100 day mark. And how important the days leading up to it are. He said I never discussed this with him.
Where in fact, we all did discuss it. With those wonderful -NOT- social workers. Part of this treatment and chemo, and sickness have erased important things. That he was told. I was told.
He agreed with me. He said he just doesn't know how he's gonna stay put for 100 days. He must oblige with the rules. Or things can become fatal.

He must cover with UVA clothes for months and months. He can't do ANY outside food for months and months. He can't do crowds. He can't leave without a mask. His hygiene will be in the finest tune.
Visitors are limited, and will be asked to be respectful in not coming over if sick, or have a sick
family member. We especially can't be around anyone fresh off a plane.

He will make visits back here in the beginning days for labs. And a couple of spinal biopsies.

His demeanor today is good. Spirits up. Bags are being eliminated by the day.
Looking at discharging as the beacon in this big ocean here.
We've learned the ropes here. Where to hide. Where to go sit and cry. Where to get the best juices. Where to get the hottest latte. Where to find the best nurses. Or at least exhaling when you see your favorite name posted on this dirty wall. We've become familiar with the parking. The front and back entrances. The freeway. The familiar faces walking hallways. People that work here. Either saving lives with scopes around their necks, or pushing carts cleaning these room cleaning germs. And trashes. Assistants that take his vitals all day every days, reporting blood pressure and temps.
They all have a duty.
To save a life.


In each room.
Food service workers approach his room in suit and tie. Always verifying and smiling. Some have built a relationship with him. With us.

He mentioned today that he's forgotten some of the first weeks here. He has small memories of me sitting in this corner watching him. Or cleaning the puke bucket. He doesn't remember the nausea.
Ya, imagine him telling me this.
He doesn't remember some of the last radiations.

And I thank all the stars in the sky that his body has healed a part of his mind during the absolute worse days.
I keep thinking of the days of labor. Curled in a ball, until that baby is on your belly.



The rainbow you guys...it's getting close.

And I couldn't have done my journey day and night without some of my favorite friends.
Friends that filled my belly while I drove in and out of a storm.  Erica...Erica...........

Come on rainbow....we need you...
Kris deserves one. We all do.

Counts:

WBC 5.2
Hgb 12.3
Platelets 194
Cr. 0.63

A good analogy of his new body and new counts-
They are newborn white blood cells that don't have the ability to fight....quite yet.

Have a wonderful wet and cuddly Sunday...


This Warrior Mama Lisa

Day 17

Betcha thought I'd forget to post the latest and greatest. 

Greatest.... 

Counts

WBC 5.2

Hgb  12.4

Platelets 207

Cr. 0.62

Today I worked my tail off on more nesting.  I don't know what is stressing me out more.  How to feed him (Immune compromised diet) or all of the worries of molds, spores, my cats, soil, dogs, toxins...you name it.  I've got a list compiled. So hard to explain, other than n.e.s.t.i.n.g.  Parting with my microwave.  

Introducing a convection or toaster oven.  Biggest dilemma is how do I rewarm my coffee each morning that I do at least twice. First world problems. 

I've cleaned out more junkdrawersfilledwithyearsworthoflife.  HA.

I sent a picture to Kris of my "handyman" drawer that has a mixture of tools that I guess people should have in their home.  Well, my tools had old remnants of dried Arby's sauce smeared all over it. 

And so....

I cleaned that.  

I also parted with little tiny zip ties....

Zip ties.   Why. 

Who had them there, and why.  LOL

I cleared my utensil drawer out.  You guys, so many memories in there.  Wooden spoons and ladles I've had since Kris was a baby.  The knife from my wedding.  The red plastic cookie cutters that never managed to really indent on the dough, but I held on to them....just because. 

I cleared it all out.  I saved my favorites. My most used.  The most sentimental. Because honestly that still is something I cherish when I do make my way to my parents.  Holla to the Tupperware salt and pepper shakers.  And measuring cups. 

It was all I could do to part with some pineapple cutter thing that I bought at a cooking party ---hello Evelyn....LOL   And I bet I used it once.  

But still, I was probably a mama hero that day.  Perfectly sliced pineapple.  

When now I just slice that stuff up in seconds.  Because you know the drill....

Age brings finesse.  And wisdom.  And creativity. 

I didn't get to my boy today.  His sister and Dad have been there. You better believe his nest is ready.  His bed is plush. His tv and new dresser I picked up last night is placed in the perfect spot.  

I've made so many changes.  For this.  For him.  For us. 

I wonder what the week has in store for us.  I wonder how the layout will be. 

He's getting antsy.  A tad bit irritated with things.  And people.  

But wouldn't you?  Almost week 4.  In a room.  Sick, and better and sick and better.  And scared.

And chatting with people at times you care not to, but have to. 

Day 17.   Looking better than 16.

Doing it Kris.  

I can't wait for these pages to flip and close.  One step closer to healed.  

Happy Saturday night.  My little back is screaming at me.   But nothing compared to the marathon my boy has endured. 

High School Days

Mexico 

Daydreamin' in Mexico....

Big Love, and kindness from my heart to yours.

This Warrior Mama Lisa

His Auntie-

From day one of this nightmare, my sister has been filtering around trying and doing everything she possibly can to help.  To help him and to help me. From the beginning days of chemo rounds, and delicately trying to feed him, to arriving at the hospital with a cold of her own so she just sat in the parking lot. 

By herself. 

Buying him slippers, socks, and delivering food that he would eat.  Like Porto's in Downey that makes the best sandwiches.  

And the times he'd suffer from "Chemo Brain" and argue with her about what she fed him last, to the next. 

She's been hurting just like us.  And lays in bed at night with the tormenting feeling of what we all feel.

Before he entered City Of Hope she requested numerous days off to help.  To help me and to help him.  

On about week two, he became restless and frustrated.  Frustrated with visitors and family that just wanted to help. 

And so she backed away.  She really had no choice.  And so she again, filters her soul, and is trying to figure out what and how to help him. To help me. 

This past week she sent me a link about German Donors.  It was TRULY amazing.  I sat in the corner of his room, with the blinds closed..and listened so intently.  

She sent me this latest link.  

Survivors Guide To Bone Marrow Transplant

And you begin to realize that family is everything.  My only sister that is hurting and watching from a distance.  Because she wants to help so badly.  So she does what she knows best.  Research.

Take a read through what the process looks like.  What Unrelated donors really mean.  How close matches help....etc.

I hope it clears up questions you may have.  I've also had questions about the journey of "counts" and where they should be....

Keeping things honest....I never could ask or go there. I simply walk through the valley of his fight for life, and watch them increase and listen to doctors daily.  Knowing he's thriving. 

This may sound completely redic to you.....but unless you're wearing my size 8 big shoe....you wouldn't get it.

Happy Saturday!  

Lots of PEACE to you...

God is good!

Love, 

This Warrior Mama Lisa-

Tina, I love you sister....my fellow alley cat-xo

Day 16

So many emotions as I woke this morning.  Friday January 29th two thousand sixteen.  First sign of early morning.  I start my scan of thoughts.  My boy.  This journey. Wondering how he slept which has been horrible.  Wondering his counts.  Wondering how his feelings are.  How Jen slept.  That girl has slept in a recliner bed from the first day.  Driving over 100 miles a day for him.  My next thoughts are the final preps to get him home.  I'm scared if I'm being honest.  Don't know why, I just am. It's like bringing a newborn home with the responsibilities, and wonders.  And worries. And if you know me.....it's always worry.  I wonder if God handed me this assignment in this chapter so that I can become stronger?  Bigger?  Better?

I will never understand this completely.  But I signed up for it the day I became his mommy.  Actually the day I heard his heartbeat.  The love is unreal.  

First text- Morning honey------  "Morning mom"

How ya doing?  Crazy night with sweats and chills-  One thing we've learned in the days after stems begin their growth is the sweats.  It's like the body is growing on the inside.  His new white cells, and the good guys are taking over.  Platelets rising.  All of it.  It's truly a miracle.  

Easy for us to digest as a miracle, and yet he's up all night long in a sweaty wet bed.  Wanting to change clothes, but it's 2am, and he's just trying to sleep.  He said Ambien isn't really even helping at this point. 

Wild. 

Soon, my request-  Send me the board.

Eeeeek!  Look at them grow!!!

Yesterday when I arrived, my high school best guy friend, soon to be my son's Nino was there. 

I could hear him as I was washing my hands, and gownin' up.  It was surreal.  This guy that I haven't seen in almost ten years.  I know, it's wild.  You know how life gets in the way. And he lives far, and we lose touch.  Yet you always think of eachother on birthdays.  Or sentimental times when friends from high school reach out, and or you see a picture of your younger high school days, and there we all were. 

His mom would take us over to Rosarito Mexico and let us drink at 15.  Holla! LOL

And she'd let us hold ditching parties at her house.  DOUBLE HOLLA!  JK

But she knew we were good kids.  And that same Nino that would show up with fireworks at our house every year for Kris' birthday because he knew that at the age of 10, 13, and 15 he probably was a pyromaniac.  Sending me in a frenzy, but he'd do it any way. 

I hear his laugh inside.  

I walk in and we laugh and hug as we smile through our masks.  Inside, I'm thinking wow....the typical story.  Crisis bringing people together.  He has an amazing wife Jennifer that put together the cutest bag of goodies for Kris.  We stood there catching up and reminiscing. 

Mask-less Rebelhood

 

Jen would soon arrive.  And we'd get this dude up for a walk.  A path he's starting to become familiar with.  Doctors say, get up and walk.  Get strong.  

 As we were making laps we see this young guy kind of lost, and searching for someone.  So Kris said, "If you're looking for whoever walking, just look at the feet on the side of the rails, they're black stickers, follow that path, and you'll find em"-  

And so we are behind him as he's searching for them.  Soon we round the corner, and it's his Mom. And Dad.

Mom freshly admitted, hooked to her iv cart.  Hair still present.  But definitely fighting this fight. A million thoughts flood me as we pass them.  He sees her, they catch eyes.  Walking slow.  The 3 of them. 

Tears welled in my eyes. 

You guys.  His Mom.  She looked my age.  Dad standing there supporting her.  Young guy there supporting her. 

That journey.  What's ahead, and what's behind.  

Cancer is so hard. 

So so hard.  

 On the back side of the hospital you can see the 605 freeway.  Also an open field.  The view down below is the original City Of Hope Hospital.  Where it began as a tuberulosis hospital 100 years ago.  Old building.  Different stories, different time frame.  He moves quick through this area as it hurts his eyes.  

I love this area.  But we scoot.

And keep on. 

I posted this picture yesterday on my instagram. 

Something about behind every good man....and on and on I went. 

About how there's to be a good woman. 

If I could journal their journey through this it would look different than the eyes I see through. 

From their nightly ritual tucking away in a hospital recliner bed, night after night for almost 30 nights.  And the puking and pooping next to their beds while nurses and doctors come in every 30 minutes.  The beep from the iv.  The blood, sweat and tears-- LITERALLY

Jen waking at 4:30am to drive to Mission Viejo from Duarte.  Digest that a second.

Not able to kiss her boyfriend.  To get or give hugs.  Masked in the corner.  Wearing gloves.

Helping him shower when his mom can't. Watching him SIT in the shower letting warm water run down his face in complete sickness. 

Begging for mercy. 

I can't journal their journey. 

But I do know this has made our family a tighter knit.  

I do know he will get through this, and they will love with more meaning.

Love will keep us together. 

Cancer won't win this battle. 

Not in this family.  At least that is what I pray to our God.  

Please don't destroy us.  We've been through enough.  

Shed mercy on us.  Please-

Grow baby grow....

Come home Kris---

I love you more than you'll know until you have a baby of your own.

Happy Friday--

Go spread kindness.  And love.  

Smile at those that need one.  Because you never know what people are battling.

This Warrior Mama Lisa

Happy EARLY Birthday Regina!  I hope YOUR weekend is filled with good times, happy people and FIREBALL!

Day 15

 A dirty board, getting dirtier.  And that's okay...

Because these days, and number changes for the better only mean one thing.  Healing. 

This morning on my drive into work, we briefly chatted.  Not so much medical, but mostly about the new boots one of his friends/sponsors sent him.  Three nice pairs, and full of love. 

It's the eye on the prize type of thing.  All of those fishing partners, buddies, and companies that text, call and tag him daily to "get better dude, let's get back on the water"!

Trust me when I say I CAN'T WAIT TO SEE HIM BACK ON THE WATER-----

It's gonna be a little while.  He's gonna be sheltered, and sheltered some more prior to getting out there. 

But he will.  

Trust me. 

This morning he's still complaining of a stomach ache.  It feels like he has a big hurting burp that won't come out. 

He's still weak, but gonna walk when I get there today.  We're also gonna try and get more of that dead skin off his bod.  

He still feels "weird"- Which, listening to my friend Beth....it's all really wild, you feel the white cells and new life taking over. 

So, today I present to you Day 15.  Higher counts.  And a boy with cabin fever, yet scared.  He's fearful things won't go as they are....you know that PTSD syndrome.  

I said..."don't go there Kris, take that out of your mind"- 

 

25 days in hospital, 27 days in treatment-

Hope.  Lots and lots of HOPE-

He sent me this picture.  Our first day.  A day I will leave this Earth tainted, and stained into my soul. 

I will forever be grateful for pictures like this....

From my cousin way up north.  In between games.  Standing shot-gun to this cross. 

My beacon.  

Our beacon. 

Happy Thursday you guys....

February 3, is hopefully gonna be a strong, healthier beautiful day.  Maybe I can drive my birdie home and set him in his nest---

And it's my little cousins birthday.....so it must be. 

FAITH is the bird that sings when the dawn is still dark----

This Warrior Mama Lisa

Day 14.

Day 14. The day his doctor told us about weeks and weeks ago. 

How----( in her witty itty screatchy voice, as she used her fingers entwined together showing by example that the stems would come to peace with his body)-

It happened.  

And the path has been pure hell to put it lightly.  Sprinkled in a few moments of smiles.  And laughs.  

But man.....you guys.

And to think the path he still has ahead of him.  Our path. 

This path. 

This miracle. 

Bill made the early drive to him this morning.  

Three things must happen so he can come home. 

Regaining strength to walk.  A good distance, every day.  He did three laps today around the West Wing-

Eating on his own.

Output and good labs. 

Today's counts-

WBC 2.2

Hgb 11.3

Platelets 147

Cr. .62

The side effects (normal)-  Super sweaty.  Super tingly. And super stinky.

These things are part of the stems rapidly making cells now, and growing and thriving in his body.

It's really a miracle you guys.

He said he can feel it while it's happening.  How surreal, right?  I mean...wow.

 

Last night I drove home. Hopped in the shower to wash my hair while the sun was setting.  Something about the dry evening air that makes my dry time faster, and easier.  

I managed to shave. *holla*-  And slather with all of my coconut lotions. 

Treated my hair with some stuff Kali left behind.

And flat ironed my hair. 

It was like one of those nights that just felt at peace. 

Soon, I decided to go through my phone and start sending pictures to my desktop here. 

To journal this journey.  

Crazy. 

His doctors say that maybe he can come home by the end of next week.  You know the goal there is to get up and walk.  Get going Kris. 

The night before admission.

The day of measuring to protect his lungs.  This machine that will kill his marrow. Frying his insides.

 

The day we arrived.

Shit about to get real. 

First round of radiation-

My early morning brisk walks into get him up and ready for radiation days....

My prayers would start and sometimes end right here...

This nurse that doped him with Ativan....

Day two radiation, giving me signs of hope.

My view before he'd shut the window the following week, and make us keep it closed- TORTURE.

First day back from radiation- Dry heaving began.

This one breaks my heart, because he was already out of it, but would always smile at me, knowing I was right by his side.

Same with sister....

On the 8th, with 3 more to go.  Couldn't keep his head up.  Thank goodness for mama's that bring pillows...

Of the 11 rounds, he had them stop 3 times to puke. Some people pass out.

11 rounds of Radiation.  12 minutes long.  Total Body Radiation-

 

A lotion filled back, before we really knew how bad it would get.

The Dynamite Chemo.  One bag, and the residual side effects can't be described.

Trying to keep the spirits flowing....

Therapy...

Walks before counts completely dropped...

A fellow transplant friend....one day behind  Kris. His brother was a match...

Day 0- Feeling really crappy. Mouth sores and rash beginning.

The building in which his stems arrived, and were double checked.

Nervous and very sick.

VERY anxious and didn't want to talk.  Irritated beyond. 

Stems from Germany!

Him photographing them filtering into his body....

My auntie Lynda bringing us homemade soup...as we gathering for this miracle-

The following days, fevers would come and fevers would go.  Labs would be drawn.

The face saying "Mom, this is horrible"

But best friends show up to give love.

The day he called scared about his eye. 

On your sickest days, you're still happy to see Mama, and Jen.  To have family hold you up in spirit.

The day after you told me you can't go on anymore....

Too weak to walk, but we got the heck out of that room for a little bit. 

And the counts would climb.  And we'd all celebrate little victories, cheering him on....

Finally strong enough to go through cards. He would only read things on his phone, or computer.  Books, cards...magazines...a bit too much.

Yesterday's dog therapy.  I haven't seen him so happy in 3 weeks.

 

Today's counts.  And the board we stare at every.single.day. 

Someone's super excited to see Dad soon....

So there's a little glimpse of what the last three weeks have looked like from le' cell phone. 

Each day. Each miraculous change in his marrow. 

He will undergo another bone marrow biopsy shortly after discharge.  The things we pray for are no cells left of Kris.  

Just the new Krissofer (in a German accent) lol

We also pray for no Graft Vs. Host-

Just a new better cancer free Kris!

Happy Humpday.  May you get love and cuddles in abundance....

Love to you,

This Warrior Mama Lisa