Happy Birthday Mac-Dut

Mackenzie...

Your laugh and voice can wake up a room. 

Your style is unstoppable.

Your strength runs deep in protecting your best friends. 

Your love for clothes and makeup is like no other.

Your guardianship to your best friends is true.

The days flew by faster than I'm sure we all really knew would...

 You guys tolerated soccer.  Because your mom's were intertwined in the gig.  So you just went with the flow.

 You had me holding on to the handles in the suburban during these first days with a "permit"-

Soccer mom's keepin' it real.   Real cold.  Coldest day in my soccer mom career history.

 You make us proud.  Even as I frantically prepared Kali for a measly 150 mile difference from home during those "prep for college days". 

You grew the biggest balls and headed hundreds and hundreds of miles to TCU. boom.

You've made your mama and papa proud.  Me too.

This allowed us moms to grow close.  Closer than I ever imagined.  Those moms that would be my rocks and shoulders during the hardest days of my life. 

Mackenzie.  I hope this day is perfect.  Saying goodbye to your teens isn't even a big deal to you right now.  Because to you, it's a new rad year.  To us, we see a new horizon.  Alot happens in the next phase.  And phases.  You'll continue to grow.  To prosper.  To make changes.  With yourself, and with other humans.  You'll give this world what we expect from Mackenzie.  It's laughter.  A good voice to share fashion.  Or whatever seems to tickle your fancy next. Just know that you have a group of moms here in the hood...well not hood for all, because you blossomed from "The Hill"- Where a good ice-cream truck doesn't even make its way down the street, but that's okay.  Just know I am here for you.  Just like with Madison and Kali....I am your other rock. Love you sweet girl.  Happy Twentieth.  Make this life shine for you.  For you Mackenzie.  And don't ever look back.   

"Hold on to what you believe"

And when Kali sent this to me this morning from you.....it's beautiful. 

Mitchell her brother is with Maritime Academy stationed way out' yonder, and manages to send this to her.  

It's just plain, LOVE.

And that my friends is the product of good parenting....

Happy Tuesday kids!

How did you spend Mothers Day?

Peaceful?

As for me?  I'm back from a weekend away with my love. A weekend filled with peace and and almost too much quiet.  A weekend filled with rain storms, and big white fluffy clouds. A weekend filled without cooking, or cleaning.  A weekend filled with dining next to the man who's stood me up in the wicked days of a storm.  A weekend filled with laughter and hidden coves.  A weekend filled with text messages swirling around between my kiddo's.  And if you wonder how much I missed a full house with my babies, I did.  

But lately I kind of feel like floating.  Not sure how, or even remotely a way to explain it. Just floating...away. 

My mind, body and soul feel broken.  I can't really even spell it out.  

I just stare at Bill, and cry.  Sometimes I want to lay in my bed and not come out. 

But that's not the plan.  It's not the plan for this girl.  The girl that has always stood up for happiness.

I'll get there. 

Have a super week. 

Love, 

Debbie the Downer.

jk

This Mama Lisa Forever, and Ever.

Kris has great counts this week.  Just still a wonky gut.  His spirit is still in push forward mode.

Always looking for his friends in the midst of it all. 

One tough dude...

xo

Slow Down

It must be said that every Mom is peeking around the corner at Mothers Day with a full heart.

As for me on this particular holiday, on this particular year it sincerely means more to me than all the "almost" twenty seven years.  There is a part of this song that talks about holding hands, and holding tight through the years.  What my ears heard in the song, was most especially during the tough times.

I started this week with a new view on things. At least I'm trying.  Hard.  I still cry every day you guys.  I hate it. A good friend of mine Erica said "maybe it's all suppose to be that way"-  Maybe crying is our outlet.  Sometimes I tend to shut out the world.  And tuck away.  Holding tight to my devotional daily read. 

One of the things I'm most proud of in my 46 years, is being a MOTHER.  A mother that woke at every little wince they'd make in the night.  The mommy that would stand over their bassinet and hope I was doing it all right.  I didn't take on breastfeeding as an art, but a fucking nightmare with bleeding boobies for the first 6 weeks.  I never quit.  I'd nurse her until almost one. Working full time too. I'd chase behind them tackling them down to give razzy's, just like all of you. I'd show up at my son's school during middle school with lunch.  Just because. He never pushed me away.  I was room mom and soccer team mom for every team they played on.  Kris played on one soccer team, one time.  His analogy of soccer was "it made his legs hurt"-  He loved baseball though. Until he was hit dab-smack in the face.  Ending that career.

I would shake a building if stuff wasn't right wherever they were.  I'd pick them up at all hours of the night, with no mile a cause for my concern. I'd most always piss off my partner because sometimes I wouldn't listen to anyone.  I'd march to my own beat.  Especially in mama hood.  I'm quite sure mistakes were made.

I'd cry when they'd bring home awards.  Or every first day when they'd scuffle out of the car so nervous. 

I'd pray that their step-dad and them would bind tighter someday, always better than the days before.  I'd yearn to raise children to be self sufficient in life.  To be respectful as my number one priority.  To be kind to animals, and most important to contribute to society.  I'd panic with the thought of one leaving for college, even when best friends reminded me that "its the best thing for them"-  I never agreed until this year. 

I am a believer.  Let them go away.  It IS good for them.  

I'd fight hard for both Kris and Kali.  This year I want to skip away, and cherish moments of what I've accomplished.  

In this video there's a part at the end that looks like my niece Tori. Toddling.  Then a boy on a bike.  

Tears filled my eyes and of course, wah-wah Lisa cried.  It looked like Kris at that age. 

My kids are extraordinary. To me they are.  Thank you for taking this motherhood journey with me. 

Whether you're filling in for a mom, or just a plain ol' mama like me, or you're a daddy and it's mothers-day...

this day is a reminder of all the moments.  

Most of my friends and followers have grown kids.  Most of my friends have watched some move away and get married, or go to college.  Some of my friends have become grammies. Some of you have found me through City Of Hope and are fighting the biggest fight of your lives with your child, grown or young.  Some of my friends have little ones.  Some of my cousins have littles.  I am telling you with my heart cut open and healing from being shattered into more than a million pieces.  

Let them grow, and do your job to help them fly away....

But cherish every milestone.  Most important to cherish every minute on this Earth while they are here.

Happy Mothers Day-

Slow Down

Lots of LOVE from me.

Mama Bird to Kristopher and Kali.  My little birdies. xo

I love you both so much. 

Be The Match

 

And if the cure for disease could possibly be you donating your stem cells to a stranger- Please reach to this link.

Simple swab for those 18-44

Be The Match

Cancer statistics are climbing at an alarming rate-

Trust me, you don't want to know....

Spread the word, and be aware....

And be kind.  

 

Happy Wednesday!  

This Mama Lisa

Check. One two. Check.

Welllllll

Hellooooo there kids! 

It's been a hot minute since I checked-in with you.....

Tuning back in from last week with several topics to cover.  All of which really deserve their own time. Therefore, I'll try to give you the quickest run down in history- ya right.

First and foremost....my son....my strong birdie.

Last Thursday he and Jen took their "hopeful" last final journey to and from City Of Hope.  A place that will always, always be a part of him.  A part of them.  A part of me.  A huge part to our entire family.  

He did his normal routine of labs, doc and last final request to have his "port" removed.  Those wires that took turns supplying medicine, and stem cells into him.  Removed like no big deal, he'd record and off they'd go. 

Medicines still ruling him. And us.  It will be an everyday reminder of what science, hope and love is. 

Last week when they made their trek to and from City Of Hope I was a tad bit confused.  I guess when you navigate through the medical side, taking away the love and nurturing that only a Mom would understand you'd get it.  Other than that I realized that there's two young adults growing up.  And navigating through and out of the most jacked up thing a couple would go through. I wasn't invited.  And later realized...maybe it's all part of the plan. 

Maybe Lisa they want to grow up and away from all of this.  Not in a bad way...

Truth.

Insert crybaby freak- me.

My mom was due to land by jet aerooooooplane in the lbz on Thursday afternoon for a weekend visit for my Grandma's 85th Birthday.  Bill was leaving town for Desert Storm ( A boating poker run, reunion of friends, boats and life out at the lake)- 

Kali was headed to Stagecoach (A desert concert that goes on for 3 days) with her friends, and most importantly....mine.  

My fridge was empty with the exception of lemonade, 3 eggs, tortilla's...and some beef jerky on my kitchen table. 

Since Kris has been gone, le' fridge is suffering.  Sorry Mom.....I do cook.

My mom is rad that way.  She just said "no bigs Lee..."-  When inside I wonder if she thinks I don't have my shit together.  I brought her to work with me on Friday, along with little grocery runs to grab this and that..but only enough to just get by.  We wouldn't be home. Our Friday afternoon and night landed us in West Covina for my Grandma's surprise party. 

At the VFW Hall.  Mad respect for this place. 

We took on that VFW Hall like a respectful trip to Disneyland.  A place where a good stiff drink is served, and you'd most guarantee some dirty looks our way due to the fact that our tribe took over.  From 3 years to 85- 

We'd dance, sing, holler in pure party fashion.  I couldn't help but watch the glares and stares our way.

But ain't no party like the way we party.  Celebrating eighty five years of the leader of the pack.

Out. Of. Our. Way.  

Boom.

Plus, it's life.

You know...life. As one lady shook her booty over to us, named Lois.  Her birthday too.  Her hair coifed to the perfect two toned, t.  Her exact words to myself, my aunt Lynda and my sister...

"If you aren't having a good time, that's your fault"-  

Think about that.  Eighty six years old, gathered with friends every Friday night at your local pub, with music and a dance floor.  Not to mention the drinks they poured.  bam.   Her outfit, jewels, lipstick and makeup made to perfection.  We'd chit chat back and forth as Elvis blared in the background and she'd sing along with a voice to take the place down. Asking us if we had children.  Of course you beam as you say "yup two"- Asking her....a reply that made me want to spit my dirty martini out of my lips. 

"I tried that once, and decided I didn't like it"-  Laughing as she pounded on my knee.  HAHAHA.

She has one daughter.  Whom she adores. 

And so...Lois.   

We can all thank her for the honesty and most important, her zest for life.  We all know that in eighty six years she's been handed shit in a basket.  She did mention she lost the love her life a few years ago.  He was 13 years her senior, dying at 97. That was her 3rd husband. 

Oh, Lois.

So....where were we?   If you can tell, I'm trying to get back in the rhythm of life. I'm trying extremely hard to trust my faith.  And God.  And with my daily devotional book I actually look forward to reading, I am faithful and trusting that He has a plan.  And that Kris is gonna be okay.  

Stomach issues still tackle him down like a rascal but he's fighting through.  Even when at times I can tell he'd like to curl in a ball and stay there.  He moves on.

Okay.....  Last week his counts were good.  His weight was kind of what we expected...

But....counts. 

April 28th 

WBC 4.5

RBC 3.16

Hemoglobin 28.3 (you can see his color coming back on his face)

Platelets 122

He posted a video on his instagram account of the removal of that port. If you have instagram, you can see it there- I could hardly watch it, but man worth sitting through.  I still think he's the bravest bird in the world.  Mad respect for his spirit through such a shitty card hand.  His instagram is captain_kris.  

Side Note:

By Thursday afternoon with all the feelzz and emotions drifting through my veins, it's no joke at how sappy I was.  I cried so much last week.  Looking back in my emotional rear view mirror...I know why.  When I pulled up to the airport to pick up my Mom I watched her wave at us, with her back pack on her back...and I thought..wow.  

There she is.  

I haven't seen my Mom since Kali's graduation.  

Anyway........

Here's a sneak peek at the weekend. 

 Friday evening.  The littlest, listening to the eldest.  The pattern in life doesn't change.  We all move forward. 

Loving, living and learning.

My Grandma surrounded by 6 of her 7 kids.  We have one angel in Heaven. Arlene....she's greatly missed. 

That was one fun and wild spirited aunt.  Always had a huge smile.  A light above her head to light up a room.

Happy Birthday Grandma!  85 looks so good on you...even though you despise pictures. I feel ya, I'm getting that feeling myself. 

Saturday morning my sister would swoop us up for a breakfast down in LB.  

Our one and only shot. 

My friends, co-workers, sisters-in-not-law-but-love, neighbors...you name it, always ask the same question...where's your mom? Who does she look like...andonandonandonandon. 

And excuse this shot of my Grandma in her nighty, but this my friends....is everything.  Her first Great-Grandson...thankyouverymuchlisayouteenmom-    That party the night before tossed her for some exhaustion, but she was elated to see my boy. 

And pictured here is a makeupless Lisa, standing in the one living room in the town of La Puente that has never changed.  Those bricks.  That smell of good food, and that cookie bin that used to sit up high in her kitchen.  This home you guys....this home. 

I actually cried too much last week.  

NO MORE TEARS LISA!  It's all good!

And while I was boo-hooing and enjoying just the aroma of my Mom next to me (she wears jazmine oil)-

And sucking up the moments with our aunts.  And uncle. And little grom cousins.  And my son.  And Jen who radiates when she looks at Kris.  And we played Cards Against Humanity...LOL!

And to hear my God-Mother Cece say fucker, was probably the best thing ever. 

And so....

I present to you....

Kali's weekend-  

A weekend full of apple-juice and pinata's.    

Or I mean, cowboy boots. And hats.

Or bubbles....

Thank you Shell, Maria and Roxanne for taking such good care of my girl.  You seriously are part of what has kept my beating heart working.  The love you give me and her is unbreakable.  And I love you all.

I was sweating her driving from San Marcos direct to Palm Springs.  And if you think I'm a freak, I am. 

Just wait until your littles aren't little and they start driving, and going and doing.  Just wait. 

But first....

Let's talk about our new schedule. 

Kris no longer goes to City Of Hope, God willing. 

He has started his appointments at Kaiser in Hollywood.  A dirty filthy town, but filled with the best doctors and nurses in all the land.  As we parked in this structure and walked 150 miles jk to our destination I thought....man...what a change.  

You know me....creature of habit.  CREATURE OF HABIT. 

I guess in my own way, I miss Duarte.  I miss pulling in to that place and walking by that fountain.  Whether it was walking next to our boy, or pushing a wheelchair.  It will ALWAYS hold a dear place in the corner of my heart.  

Good news here kids is he now goes every other week.  Counts allowing.  He'll do labs local-And docs every other week. 

Counts- 

WBC 6.4

RBC 3.65

Hemoglobin 11.3

Platelets 191

He's lost a few pounds.  But....let's just look at the horizon. Let's look at his future.  

His stomach is tore up.  

We requested a new oral chemo. One of which I believe might just be the wrong decision.

A decision that I made by a gut feeling.  Gleevec-

It is a gateway oral chemo for Sprycel.  One that we thought was causing the severe nausea.  And of course the given taste bud drama.  He dry heaves every.single.morning.  Some things just don't taste the same.

As his doctor says.  Either one, he has to pick.  He has to have an inhibitor in his blood stream.  We can't allow that muted gene 9/22 to scramble up.  Being Philadelphia Chromosome positive allows for crazy things to happen.  And come back.   And so....a decision must be made.  Like today. Or in our pharmacy dramatic scenario, tomorrow....because they.don't.have.it.in.stock.  SHOCKER.  Fucking shocker.

For now, we look at the glory.  Of where he is.  Of the one hundred and eight days of one heck of a journey.

One Hundred and Eight Days. From yesterday to hear his doctor say to us, "Dude you look good"-

Yes, dude, you look good.

I still lean on my Bone Marrow Transplant Survivor page to help me walk through the shadow of doubt.  

Something that creeps up on me in the dark like a monster. 

I still pray. 

Hard. 

And I will continue to pray for the rest of my days here.  

Let's do this! 

Gonna try to shed the sadness on here. The next chapter of a good summer.  Hopefully I will get to a point where sleep isn't interrupted thinking the worst.  

I want to see him laugh, and go and fish and swim, and do his thing. 

He deserves it. 

Hope all my Desert Storm friends had a blast!  I missed my lover so so much.  

I missed all of you guys there....Hi Rosa! Hi Carol!  I missed your sweet hugs. 

I missed the sound of those big motors.  

I missed the smiles from a reunion of friends.

I missed our sunset cheers, and kisses by the moonlight.

I missed our chocolate covered cherry martini nights.  Where one turned into 3.  ugh. 

As always that wind and rain does its thing....but nothing better than receiving my love back home with big hugs and lots of besos.

Have a great Tuesday night you guys....

I've missed you.  

This Mama Lisa

--------------->  as she sets down her warrior stick. 

Time to live!

And navigate through medical receipts-

(This is 1/4 of what we've received thus far)

The Deepest Love

"I used to pray that God would feed the hungry, or do this or that, but now I pray that he will guide me to do whatever I'm supposed to do, what I can do. I used to pray for answers, but now I'm praying for strength. I used to believe that prayer changes things, but now I know that prayer changes us and we change things"

-Mother Teresa-

Cute picture Kris shot at a park yesterday.

There's something about birds.  Love.  Motherhood-

 
 

And You Just Keep Moving.....

Our week ended just like any other....full, and busy....- We had a surprise visit from our littlest for her bestie's birthday.  A home we'd tuck ourselves away in on Friday evening.  A place that felt warm, and for some reason, the wine tasted a tad bit better.  Mix friends. Wine. Cake. Daughter.  Best friends. And....a Jacuzzi.....bliss. 

We always seem to reminisce on our drive home from any gathering.  And there's always that one special thing that stood out.  Usually for me it's the wine.  jk. This time for me, it was the Jacuzzi.  Lately my hands have been killing me.  Each morning, and each day they hurt.  I couldn't wait to slip into that bad boy.

On the way home, I felt good.  Like really good.  And it wasn't just the wine.  It was the cake.  The hugs.  The smiles.  The food.  The kids we long to just hang with.  The conversation.  The cat, Tink whom made her appearance and said her hello's to all of us.  It was the nice laughter we shared. That warm water that John set at the perfect temp so we wouldn't want to get back out- Point being, it was just one of those nights....

Beautiful.

And full.

Full of life. Celebrating twenty.  How does twenty roll around so fast?

Happy Birthday Maddie- I can still see a baby in this face.....

We wish you a lifetime of peace, love and most of all, health.  

We love you sweet sugar....

Excuse the grainy cell phone mama lisa style that giveszeroshits on phones.  But man...when it comes to photos....farts.

Saturday would give Bill, Kali and I a chance to have breakfast out, which is a rare treat for us.

That's one meal we all tend to make and eat at home.

The sun shone down, as Kris and Jen made their way down to San Diego to get her hair done, Bill and I would slip around the harbor. 

Sipping margarita's and decompressing from our whirlwind of a week.

Soon we'd land back at Pelican Isle.  Our local watering hole.  Funny thing was, we crashed a wedding.  A wedding reception that was off the hook.  First time ever.  Kind of felt funny sitting at our local pub, in creeper mode.  Two little stinkers.  Our friends were coming over to watch the fight so we sent them the secret code -kidding- to come on over!  Don't fret, we weren't dining, or drinking on anyone's dime.  It was simply the best people watching in all the land.

Cute part of that page in this chapter was a guy attending the reception standing next to Bill had just ordered "his favorite" tequila...as he went on to explain to Bill..."it's the one with the antlers..."-  Offering Bill one of those bad dudes.  Back story to that, it was Shirley (Bill's Mama) favorite tequila.  We always smile and grin at eachother when we see the bottle.

I of course, had tears.  Hi Shirley!  Your baby boy cheered you with some stranger.  Guess it's the little things in life right...?  Meeting new friends, in low places...shooting back a shot of --

"The one with antlers"-  (Cazadores)

If only he really knew how cute that was....

We'd arrive back home to our birdies.

 In great celebration fashion of 100-  Here he is!

Weeks and weeks ago my plan was to host a little bbq, honoring the 100 day mark.  Its obvious how beautiful this day is.  And what it truly means.  Only thing is, I want to wait.  And celebrate bigger.  Later.  I want him to continue to heal with the changes of meds as our saving beacon.  I want to delicately pray and keep positive vibes flowing in his direction.  To yearn for bigger celebrations.  Right now it's all about keeping infections at bay.  It's keeping this body moving in the direction needed.  He takes tons of meds, drinks plenty of water and wakes each day with a new chance.  A new beginning.  Each day we wake with honor of  his life.  And being here.  

We will have that bbq some day soon.  When the time is just right.....

 Kyoko bringing her 100 day offering to our boy.  And look at that cute bottle!

Note- Kris doesn't drink alcohol- But you better believe we filled those glasses and passed them around the room.  Boom.

Sunday rolled around....our focus was Monday.  

Bone Marrow Biopsy-

Still not feeling well. 

A stomach that offered vomit at brunch on Sunday while celebrating their friends birthday.

But in no-big-deal-Jen-fashion....she proceeded to hand him all the napkins on the table, with a reminder to maybe hurl in the bushes....and possibly try to miss her feet :(

Our first topic yesterday morning was....

Let's get to the bottom of this-

Tummy Trouble, we're coming atcha!

Arriving as we do, first stop- Labs.

Second stop- Doc.

And me, still carrying my big bag.  Big bag don't care. LOL

Doctor finally calls us in....

Where he proceeded to tell her about his chills, tummy ache, puke, over all feeling horrible.

And so....

She did the biopsy.  One that I cowardly walked out of again.

Saying my sorrys and scooting to the waiting room.

(insert chin down, sloughing my bag down the hall in pure shame)

Returning once done with my list of questions.

Concerns. 

Conclusion =

Gonna stop the oral chemo for now, until his stomach is settled.  It's most likely GVHD in his stomach.

Back on prednisone (which is the miracle energy buzz med, but culprit in count drop)

Adding one more Tacrulimus, and one more Sirulimus

Bringing back Noxifil 

Watching red line in port arm due to it's constant clog (could be infection, which could cause d. all of the above)

 Also has a sore on his leg that still seems wonky. (Was one of the factors that originally brought him to doc and how this all started)

He continued on with his sorting of concerns.  

We both asked about her father.  The father she took to his doctor visit, and we'd check to make sure everything was okay.  She told us he has lymphoma.  So nonchalantly....

After laying flat for about 45 minutes, getting his port changed, and cleaned...

Mentioning again how he just can't wait to get in that ocean. Starting with snorkling. 

He just can't wait.  He wants to move on in life. And just feel better. 

Her response..."Kris you can...and you will honey"

We'd be back down the road to....

The P.H.A.R.M.A.C.Y.

A place where a hungry mom with all patience gone should never step into. 

You guys, I visit the pharmacy with his meds no less than once a week.

Usually twice.

The wrestling match would begin. 

I'd smile through what I felt to be outright misery.

Asking at my breaking point to "speak to the pharmacist"-

At this point in the game I cannot deal with techs.  I cannot deal with young working sassy pants, or shit, any aged sassy pants working at a counter that act as though there's no care in the world and life is just one big rainbow...filled with unicorns...and that you can just come back tomorrow to get these because we only have 12 on hand, and blah blah blah....

The prescription was faxed to you last week.  Hours ago.  Here's a hard copy. 

W.H.Y.

I lose my shit. 

Kris in the car with the seat tilted back.  Sending me happy faces back in emojis because he see's my breaking point.

We arrive back home.

I sort meds.

I sort advice.

Remind him to wash again.

Pray at the table as I fill another weeks worth of medicine. 

Crossing each summary line with my highlighter.

Making notes of what to re-order.

As his doctor says....counts look stable...-  Let's be positive....

And don't worry mama...

STATS-

Day 103

WBC 3.2

RBC 3.38

Platelets 117  (rising which is good)

Liver looks good, kidneys look good. 

Weight dropped by 2 pounds-

Today is Wednesday.  

Today I've been a tad more weepy than the others, if that surprises you at all.

I want to let go, but I'm afraid. 

I remember as a young child and my parents signed me up for swimming lessons and the fear started the first day in the car.  Pulling away from the side I held onto with great hopes to meet the instructor. 

And the final grand finale was jumping off the high dive.

I will never forget that feeling.

Ever. 

Lately, I feel like this is life to me.

I am trying to let go.  I've been traumatized and I've been broken down.

Always trying to hold it together. Jumping off that high dive and letting go of leukemia and relapse and rejection and fear and cancer and infection and hospitals and ivs and pain and suffering and sick tummies and watching my son brave something handed to him so unexpectedly. 

I think I'm ready to jump. Into the bravery pool. 

Everybody hates suffering.  Everybody also hates to see pain.

I'm trying to be a new me. 

To put down my warrior mode and begin to just live.

And trust.

There is a plan. 

Trying to trust that plan.

Keep praying friends.  For him. And for me.

Thanks for standing by me. I can only imagine you're all over reading my weepy mess.

This is the hardest thing I've ever had to write about. 

Love to you all,

This Mama Lisa

Wishing you the best Kris. I know you're ready to move on and just live....

xoxo

What 100 Days Look Like....

Wow, talk about flooding the soul with so much emotion with just pictures. woah.  If I could help one person in this world while battling cancer, chemo, treatments, and most of all...transplant....it would butter my heart in more ways than one could explain.  Some of these pictures are out of order.  I'm cramming them in for the sake of this day.

A day that my boy still isn't feeling 100% on his 100th day. His appetite fell off a few days ago..

We'll hover some more.  Or as I told him this morning...maybe not.  Maybe I should just sit back and let him navigate through the days that feel good, and those that don't.

He knows I am here.  

I pray like I've never prayed before.  It feels good to see that the world is praying for him and us too.

Trying to get myself back in the game of life has been interesting to say the least.

Letting go, to let him.......thrive. And grow.  Easier said than done.

Love hard you guys.  Do not take today, tomorrow or the day after that for granted.

And if you have pictures of the days, weeks and months past...frame em.  Tell your loved ones, you love them.

Hug tighter.  

Smile at a stranger...as I always, always...always have said....you NEVER know what someone else is battling.  This life is hard.  It's so twisted and so unexpected-

This rollercoaster is real.  IF you are lucky enough to avoid buying these tickets, you should.

Admission paperwork...Dec 2015

Our last dinner out at The Crab Pot as a family, with Jen's family....Sunday Jan 3rd 2016

A place I will always, always hold very close to my soul.

 

Day 4- A wet raining beautiful morning as I made my way to my baby for his radiation torture.

Hello Duarte foothills!

The beginning of the darkest days....

Days before treatment being fitted for radiation, and lung blockers...(red face from palifermin injections)

Second day early morning radiation. This sweet nurse over doping him...a day I will never forget.

Third day.  Just the two of us.  So sicky already--

These pictures make my stomach turn. 

I'm sorry Kris to see these...but it's life-  The life we were handed.  And so....

My poor baby...

Fried red face...

A sickening achievement.  One I can never fully understand.  Ever.

A rash so bad he couldn't lay down.  He shivered in pain....GVHD- (donor cells attacking his)

Out of sinc picture...but it was the day of the one and only chemo he'd receive there.  They called it "Dynamite"

Warrior for life

PT in the room....zero counts...couldn't leave.  In fact, would be in this room, these four walls for weeks. 

Those suits....the sound of the crunchy-ness-

Johnathon! Brother in God.  Ex gang member.  Transplanted day before Kris.  Spreads love like a ninja now...

Hitting rock, rock....bottom. 

The evening the stems arrived- Very ill.  Very irritated.  Very weak.  Wanting us to leave the room, but remaining polite.  Reggie our nurse working hard and fast....

All the way from Germany.....and I can't wait to meet him someday!

Strangest, quietest, surreal moment.

Our auntie came with homemade Pasta Fagouli soup, bread and drinks for us.....LOVE. Pure love.

Feeling terrible at like day +6   At rock bottom...

Best friend comes to visit....

Finally strong enough to want to read cards and books. 

A day he looked so forward to....being with the dogs, and out of his room.

The walking of the halls would begin....

Zackie would come on a Sunday and we'd play the longest game ever.

Another good homie, Stone-

Nino!

We told Bucksie Dad was coming home!

Getting ready to leave! Saying our love to the best nurse in all the land. EVER.  Sara Irons.....#1

A journey, for sure.

Ready to GO HOME!  The lure in his hand....the camera being held by Sara as she watched tears fall down my cheeks!

Home and beginning to try all things fattening.  Mac-n-cheese....sliders, soda.  All things I normally don't buy.

Starting to wean from the steroids...not feeling very well....but smiling at me...

Still takes this many...twice a day...

Twice a week, every week.  For 100 days.

Always counting my blessings as I walk with him in and out of the beautiful City Of Hope....

We've sprinkled those trees with bracelets.  Captain Kris for Life!

Port Change/Clean- Weekly...

Hannah and Kris...she was so happy to have him home....a former cuddler...

Best friend takes a doctor appointment with us.  Because he is filled with LOVE.

Part of the deal....every week.  All week.  All day.  Meds.

Too weak to walk, but not too weak to be silly...crossed eyes for the win!

GVHD in the gut

Bro & Sis

Kali, Auntie and Kris

For the Warrior in me- March/April 2016

Let's Do This! City Of Hope March 2016

TPN = Butterflies...in my tummy!

Back in for a cold....

After the weekend stay at Le Resort COH-

A casual stroll around the block...getting stronger!

Easter 2016

Day 90

Day 91

Today marks day 100.  He's fighting to eat.  To get stronger.  To live the life he wants. 

It's not an easy road.  No one said it would be.  If I had to do it all over again beside you, I would. 

I pray every single day for you Kris.  I pray that you become stronger, and better.  I pray that you stay safe, and wash your hands.  I know I nag you more than you want to hear.  But if you put your hands near your face, and in your eyes, it's not a winning combination of germs and health.  You most certainly can lose the battle.  I still look at all of our pictures around my house of you, and Kali.  From your childhood. I will never stop wondering why you've been chosen for this fight.  

I pray that you will look back on this someday as a nightmare that we all woke from and move on. 

This blog of mine has shown us all just how important living life to the fullest is.  Yet keeping priorities and work in front too.  Staying focused isn't easy for you as you said yesterday.  I can imagine with all the chemo's and radiation you've had how a body must feel.  Not to mention, your poor brain. 

I hope the next hundreds and hundreds of days offer you more good days, than bad.  I hope that I can stick around to see my grandbabies one day, and see you better with spirits high and soaring as you once were.

I hope that this ugly disease doesn't win in all the support groups I see and read daily.  I pray for them.

For their families.  Their Mom's. 

I hope that you remember until my last breath, or yours, that I will fight to the end of the Earth.  

Or to the Heavens. For you, and for Kali. I never knew I'd love someone this much.

You are my little bubby.  I am proud of your strength.  Most important, I honor you for the attitude you've tried so hard to keep.  When most times you'd like to tell us all to go eat shit. 

But you don't. 

Because, well....love is love.

And this just made us all love a little bit harder. 

I love you Kristopher. 

Honored to call you my son. Toughest birdie I know.

This Warrior For Life Mama Lisa