In Between The Waves

Last week after Kris was discharged from the hospital, we knew he'd have a break.  We also knew he'd have this week with only one appointment.  That appointment (that he drove himself to for the first time) was a port clean, and blood draw.  

Upon leaving and having lunch with his uncle and cousin, we knew we'd just wait. 

You wait for emails, and or phone calls.  From his doctor.

I sit at his desk partially through my day.  Therefore I catch the email alerts of "results" as they come in. 

I also catch "You have a message from your provider"- 

Both differ greatly.  

I have a very hard time opening up results.  For the last two months they look so scary. 

At just about 4:45pm, I shut down Kris' emails, and headed home.

That evening as I was crawling into bed, Kris texted me.  "Mom, I'm gonna go fishing tmrw, leaving at 2am, and will be back on Wed"-

I read the text to Bill, whom shook his head, and we both laid there digesting it.

For me, you know how I feel.  Go enjoy life.  Salty air. Friends. Boats. Fish and maybe even whales and dolphins.  He's been half way to hell and back.  And to have one week before it starts all over again.  I say....go. Go, and be smart Bub.

And go he did.  But not before I reminded him to check emails just one more time.  Just by chance if Dr. Chen emailed.  Soon, he said yea.  He did Mom.  Stating his counts look good. His body has recovered from the last round, with infection creating that last hospital stay.  He said, you can admit yourself for Round 3 either Wed, Thurs or Fri. Latest Monday.

Kris did what his soul felt best.  A few more days of being out in a normal life. Staying salty. 

We check back in bright and early Monday morning.  One week in.  Solid chemo. Along with another Spinal Induction, and pull. Spinal first thing Monday morning, so you can see why Kris wants a break.  

Once he's in next week, he's strong for the first day or so, and slowly, slowly, slowly you watch counts drop.  A body trying to discharge and get rid of the poison.  A son of ours that changes colors.  Sores show up in places you can't imagine.  He stays positive, yet sick.  He stays strong yet weak.

The process as last time was 3 weeks.  One week in, one week home super sick, and one week back because he came down with what they call "Neutraphil Fever"-  Basically counts wipe you out, you admit with fever, monitored around the clock, they bring you back up, and you start the recovering process. 

Blood cancers are fuckers.  And especially when they migrated and took over your bone marrow.  

I still battle sleep and this morning I realized the analogy of my despair.

Have you ever had something you are worried about, and you are going along in life and for a split second you try to feel like everything is okay, and life feels, smells, looks, sounds normal?

And then you wake up in the safe of your bed, or living room, and you look at the pictures that line the walls and you tell yourself, this is crazy.  THIS is fucking crazy-This fight is real.  And it will be a very long time before it goes away.  In any direction.  It's here.  And it's not going away. 

Therefore, while he enjoys whatever salty air he can breathe, I say do it. 

Last night after I stepped out of the shower starting my frantic dwelling of "I haven't heard from him all day"

There was a text- "Hey Mama"- 

Heyyyyyy...

He's at the island. In a big boat.  With good friends. Covered up. With his meds. All his fluids.  Port covers, and lots of smart thoughts. 

Even when I started to remind him of the little things....his response was what I know him best to be.

Mom, I'm taking good care of myself...don't worry.

But I don't think I will ever stop worrying.  

 This is the biggest nightmare I've ever been awake to witness.  Each day I try to make a difference. 
And sometimes the only difference I make is something simple, maybe even unrelated to the C word. 

Research is still extremely hard for me.  His leukemia has a complex case behind it with Philadelphia Chrome-X.  And with that, it makes my research turn to diarrhea. Or a really really bad night.

I pray.  I pray hard.  I'm trying to learn to be alone more. I've had a very hard time being alone these last couple of months.  Something I've always enjoyed.  No longer do I yearn to water my lawn, sitting on my porch.  As my sister says....it's a way for too much time to think.  Then panicking.  

This weekend will hopefully be filled with love, all together....laughing at the good stuff, and wishing away the fears of next.  

Big love to you all,

This Warrior Mama Lisa

When My Birdies Are Happy...

Friday evening Kris sent us that text as he does...you know how it goes...

"Hey mama, watcha think about me goin out on Justin's new boat for a break in ride"

....................................................c.r.i.c.k.e.t.s.

Until I thought about it more.  Salty air, a boat, a good friend, a warm cabin, and a kick ass beautiful Friday evening.

Ya.  Go.

And so he did. 

After Bill and I sat down for dinner that night we both pondered on it.  And both agreed, heck...let him enjoy this time while he feels good. 

Saturday morning we received the same text.  And soon pictures....

 It's so hard to not nag.  You know like I wanted to ask if he had "press n seal" under that shirt on his port area just in case it got splashed.  And to NOT eat any fish.  I have my theories of our waters, and Fukushimi. 

He already knows....so why nag. 

Just sit back and feel that smile with that dimple underneath his protectant. 

He calls this his "Dad hat"-  

Sunday he took Jen out there too, and his response this morning after Good Morning, how'd you sleep....

"Good morning, slept really good mom, I was so tired". 

I bet. 

Meanwhile just south of us down on the beach with her squad.  Miss. Kali was all up in her Sorority gig doing some shoots on the beach. Supporting October's Domestic Abuse Awareness. 

In the views of this weekend for my birdies, I'd say it looked pretty darn good. 

And Mama?  Well, I did more laundry, and side jobs around the house like cleaned out my 80 junk drawers and craft bins because, hello, I am a hoarder.  Someone needs to remind me that I do not need all these ribbons anymore.  And all these little labels, and stickers.  

Right?

Pray for Kris' good counts today.  Labs taken at 1pm, we are crossing fingers, toes, arms, and eyes that Dr. Chen doesn't ringaling-ling.   My fantasy is packing up our little family of 5 plus one doggo and heading out for the weekend before Round 3. 

Sound divine?  Sure shit it does....

As the sayin' goes, only this time flipped around....

"When mama's birdies are happy, this mama's happy"

 

 GOOD POSITIVE VIBES FOR OUR MATCH CALL!

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tmrw...

 

Love, 

This Warrior Mama Lisa

Recognition

In these moments of despair, and a family crisis I am amazed at the strength.  From us.

From him.  For me. For the kids. 

A few things I want to tell the world about this man. 

He walked into my life as 3.  Two young kids that were in need of guidance. Love.  Trust.  And dedication.

The last two months I have barked, cried and shriveled up into a ball over this. 

Like the other day when he brought me my favorite sandwich, but forgot chips. 

Then the next time he brought the favorite sandwich WITH chips, but brought PLAIN BAKED LAYS. ew.

After my little snippy lips let loose, I apologized later letting him know I was an asshole.

Or how he turns the air dial up when I'm hot. From 7 to 5.   And 7 is the coldest of coldest, and right now, I want to freeze at night and rely on my blankets.  Not 5, to kick covers off. So the next morning I make my comments, and he sits in silence understanding me.  Again, later knowing I am just an asshole.  But he smiles and soon we laugh about it. 

Or how about reminding me about the little things at work that need to be tweeked, and yet all I can think of is Kris.  

We walk the walk together. He sees me weep, so he holds me closer.  

He checks on the kids when I am overwhelmed with just trying to make life work, at work. 

He lets me go to SuperMex to get green rice and a margarita just because he knows it makes my world a better place.

He has sat up with me at 3am in the living room, as I lay my head on his shoulder asking "why"-

He asks the doctor questions when my lips freeze because sometimes I want to say so much, but my lip quivers. 

He goes with me back and forth to drop food off to Kris. Whatever and whenever.  He never peeps a word. 

He knows that I am a mama bird, and loves me more for it. 

I've always taken care of everyone.  He stands back, because he knows it's my only way.  Really the only way I ever knew.

He held my head last month and promised me we will get through this. No matter what. 

He lets me drive because I am a back seat driver.  eh em, he tailgates and drives too fast.  

Kris will kill me when he sees this picture, but it makes me smile. Although it kills me to know leukemia was somehow sprouting in our boy. 

Bill is my soul mate.  We found eachother at a crazy time, and have walked some paths that would blow some people down. 

We become stronger.  We say every morning as we hug, "Lets do this baby, we can do this"-

He's the king of programming all things around the house.  You want a nightlight to blast on as you walk by? Call Bill. 

He's methodical.  And I love every bit of him.  Even when he rinses out his coffee mug and leaves it on top of the sink instead of inside.  Or you know, that tap of the shaver into the sink leaving stubbies.  It's okay.  

Because I am quite sure he's tangled in my hair every.single.day.  In your toes, right Bill?

Huge shout out to you lover. My rock.  My soul mate.  

You have filled my heart to the top.  And for that I am grateful.  Kris and Kali are lucky mama is loved, by you.

"Let's do this honey"-  One day at a time.  Until our handsome birdie is up and at em' again.

Happy Friday Fellers.

Play hard, and don't sit on the bench.  

Love to you,

This Warrior Mama Lisa

Wrong Side Of Bed.

This morning I woke on the wrong side of the bed.  And whoever made up that "sayin" is funny.

I didn't sleep last night. Like up and down, tossing and turning.  AND this was with freshly washed linens.
You know the kind that smell like Downey, and the bed is so divine as you pull it back you can hardly wait to lay your head down?  Like that.

All was good until 11pm when I woke suddenly and started the fucking process of why my son came down with Leukemia.  Like why did last week turn to shit and this week even shittier.  Why does he have to go through so much.  At the awesome age of 26 he should be out casting his pole all weekend long. Laughing away with his friends, because he's silly.  Not looking at us deciding on what he can handle food wise because this week everything tastes like soap. 
And wondering when he can get his transplant.  And wondering why his stomach hurts so much.
Listening to us tell him that chemo is poison and it's trying everything a body can do to get rid of it.


But guess what?  He still keeps his spirits high.  Even in that room 4115 that we discharged from yesterday.
He makes me crack up. If you could see the videos he sends us.  I roar.  Kali and I get him. Same with Jen.
One video, and if you follow him on IG it was his lunch.  Mac n Cheese.  He played a little drum solo on it.  I guess it was a little burnt.  But man, I laughed so hard.
Another good laugh was Tuesday night I stood in the teeny tiny bathroom as he showered because he's a fall risk and he had the temp up to 80. Mind you, I had a mask on. As he stood there enjoying that hot water falling on his body, I was literally ready to collapse.  Finally pleading that he kinda hurry...but knowing it felt good to just have water on his back.  He's having hot flashes that make menopause look like a walk in the park.  So flashy that he turns red, and super white.  Sweat drips from his body.  Creating chills that you have to cover him up with.  

He texted me yesterday at 10:30am.  "Mama, Dr. Chen and I had a good long talk, he just left and gonna offer discharge paperwork, if I want to"-
So, I packed my big bag into my car.  Dropped Bucksie off at home, and headed to Le Kaiser'-
Upon arriving he was so happy to see me.  We sat there talking about his discussion with Dr.  Chen and why the purpose of really watching counts matters after those strong rounds of chemo. And that he will let him have a break next week to see if his body gains a little, and recovers a tad more before round 3.

About two hours into our chit chat, which flies by in the hospital.  Don't know why.  I decided to go "hunt down our nurse Joy" whom I had never met.  Asking her if she was maybe done with the paperwork....?  I mean 3 hours had gone by.  Her response "Oh yea, let me just print the paperwork out"-
Here's the thing we've learned about admitting and discharging. 

It takes FOREVER to admit.
FOREVER to discharge.
And you have a shit load of stuff.  From pillows, blankets, shoes, bags of stuff, you name it.
AND more new prescriptions to pick up.  Meanwhile with your weak birdie standing by.

I made a trip to the car, coming back to hear our discharge instructions...etc.
Picked up the meds, while he sat there smiling at me.
Drove him by my house to get Bucksie and some Tea Tree Oil for a sore on his arm that still looks wonky.
By the time we got to my house, he was losing his lunch.  Having to lay down for a second to get his marbles in order again. Sitting on my couch that he did as a young boy, trying to pull it together to just make the next leap home.  We looked at some childhood pictures that he wants copies of.

I took him home, and he thanked me as always.

I received a text last night from him that said "Mom, thank you for all that you do for me, I love you"

I am exhausted.  I am trying to keep things moving.  Some days I just want to stay in my bed all day.

I can't. I won't. 

Pray for him.  He's home.   He's recovering more.  Skinny boy, but we are all forcing whatever, whenever in him.

Next week he'll get a break from chemo, and than we'll stare Round 3 straight in the face.

Have a good Thursday evening friends.

Be good-

  Big love,

This Warrior Mama Lisa

And The Silence Brings.

I'm sorry I didn't get a chance to update here on Le Blog'

Kris was admitted on Sunday morning for a raised temp.  A temp that started at 100.2, rising to 

103.00 by early afternoon.  Admitting into yet another angle of that hospital in a room that he felt best in.

He was so sick. Asking us to cover his face.  Shivering so much it was all we could do to make him feel the least bit better.  Nurses packed him with ice. Administering meds to get things rolling again.

Just what his doctor assumed would happen. Happened.  

No counts.  Not just low.  Just like zero'n out.  

Platelets were brought it.  Transfusions were brought it.  

Puke, and all other body fluids that make for a horrible night. 

It's real. 

It's a fight.  

And  he will win.

This morning after my sister delivered him a smoothie, to which he drank half of "AWESOME" news I tell ya-

Two bites of a sandwich that is miraculous. 

Yesterday as I sat at the end of his bed with my face mask on, he said.."you know Mom, it actually feels safer in here because I know they are monitoring me"-

  Getting through this crisis.  Together.  As a unit. 

 

Pray hard. Love harder.  

Keep human kindness in the front.

  Hang tight while I navigate through more days of blended...everything.

Even when I fail on taking care of everything and everyone else. 

Doing the best I can. 

This Mama Warrior Lisa

Things We Knew

We knew he'd become sicker. 

We knew he'd feel so terrible that nothing we could hand him, or put in front of him would make this mess cleaner.  

Because this fight is something you can't explain, unless you're unfortunate enough to have been through it. 

Or still walking through it.  It's not good. Or easy.

This week included lots of bad nights.  Terrible days.  

A body weak from so much chemo.  A body that couldn't sit up without puking. 

Two parents that do anything and everything we can to help him. Transporting him delicately like a feather. 

Holding the steering wheel, all along thinking what the fuck, and why does he have to go through this. Why.

I've never ever in my life witnessed my birdie so weak. 

But each drop on this rollercoaster I continue to pray.  To believe in him.  In medicine. In doctors. 

Waiting for a match call.  For our next page in this horrible chapter.

This week was not good. 

Counts are too low.  Food is an enemy to his body.  But he is fighting. 

I hope you all have a good weekend doing what makes you feel good. 

For us, it will be loving on our baby.  Whatever he wants.  Like this morning he ate a few bites of biscuits and gravy.  Silver linings.

Peace to you and yours,

This Mama Warrior Lisa

And If You Do Kris....

 Dear My Kristopher, my merkamer.  My bubba-loo.

If you scroll through Mama's blog.  And you find this today. 

This is for you. 

Today, and the last few days have been brutal.  For you especially. 

If I could trade places with you, I would.  You will never know the anguish I carry with me through my waking and sleeping hours.  You will never know my strength and where it comes from. I won't either. 

My Simple Strong Man. My Birdie.

She broke the bread into two fragments and gave them to her children, who ate with eagerness.

"She hath saved none for herself," grumbled the sergeant. "Because she is not hungry", said the soldier. 

"No" said the sergeant, "because she is a mother". 

My calls start to Kris just after sunrise each day. I know his nights are a mess.  But I know and feel he's awake.  He most always greets me back with the most loving text.  His soul wants to protect his Mama, and yet my soul wants to cover him with all forms of protection, love, peace, and goodness. I want to feed him, and monitor e.v.e.r.y.t.h.i.n.g. But most of all love.  They never want me to know just how bad the night was.  Sparing me details because they just want to protect me.  Life and motherhood.  It's a delicate flower, isn't it?

Driving to work this morning our song came on.  It grabs me instantly and pulls me close to my boy. 

Weeping like a weeping willow crying out loud because it feels good. 

I lose my shit every once in a while.  I am angry.  But mostly I am sad. 

But if you see this Kris. Remember, we are behind you. Mama is paving ways that you might not ever see, hear, touch or smell. Do know one thing.  I am moving mountains baby.  I am.

Enjoy this day friends...love on your babies. Pray for Kris. Pray for healing.  And pray for a resting peaceful body.  Tough week.

Love, 

This Warrior Mama Lisa 

Huge thank you to my friends that are my rocks. I wish I could repay you.  If I only knew why this happened, or how I could hand the love right back. Thank you for understanding me when I clam up and only fall into the arms of my rock.  

Almost Two Months

Almost two months in, and I've been schooled in more ways about Cancer.  And Leukemia. And doctors. And nurses.  And chemo.  And cleanliness.  And systems in hospitals.  And appetites.  And continuing on the path I've used my whole entire forty five years of life.

Never stop asking questions if you don't get the answer your gut is asking for.  Ask. And ask again. And keep asking until your soul is 100% content.
Whether it be for fucking mouthwash, or shampoo because his head itches so bad.  Or for a little education on how to give himself a shot that his mom is so paranoid of.  And how to make sure counts stay within reason.  And how to make anything and everything just a little better.  For this life.  In this fight. And avoiding social workers because they flat out suck.  

Last week Kris was in the hospital.  What started out as just the typical yucky feeling of fighting this fight, soon turned into 10 bags and rounds of various chemo's.  Chemo's that we knew would drop kick him hard into a wall.  And wall it was.  By Friday after pleading with his doctor to just go home to try and recover there.  He agreed.  But not without procedures and instructions.  Instructions that included injections into his belly every day to help keep his counts up. Instructions that soon become forgotten because you are so sick and you are trying to remember yet feel so weak and shitty, but you know it's what has to be done.
While in the hospital they administer something called "Hydration" rounds.  Which is something to push through after the chemo has done its damage. 
When you go home, it's a whole new monster to deal with.  His mouth is full of sores. He's puking up nothing.  He's up and down trying to go potty.  He's laying in his own hair that is falling out and itching beyond words.  He can't be around people because counts are at an 8.8-

Our weekend was hovering.  Hovering to cover him with anything and everything filled with love.
I won't get into details.  But I couldn't settle myself down.  He is weak.  He is sick.  And he is a fighter.

Yesterday we headed back for MORE chemo.  As we arrived, his doctor was down the hallway looking for him.  Kali and I walked in one way.  And Bill and Kris were already in the waiting room.  (Apparently in the wrong area)-  What I have learned also is the terminology for "Infusion"-  "Induction"- "Spinal Induction"-All mean different things, and DIFFERENT locations.  So after almost losing my shit to Dr. Chen, and asking him for some "magic mouth wash" -(in which I am still amazed that I didn't hear about this during our first boxing match and chemo) that YES...in FACT there is a mouth wash that a pharmacist has to make to help with the many many sores in his mouth. 

Infusion started, Kali and I sat bedside.  Soon to be told, we'd need to head to hospital for Spinal Chemo after this 2 hour bag finished up there.
So another spinal tap, another round of chemo, making it our 15th in 7 days. Here's my birdie waiting for his spinal, and 15th round.  This one going back in through spine.

I can't even complain to any of you.  This is what HE looks like.  This is what CHEMO looks like round after round after round.  To say he's been a trooper is seriously an understatement. 

Yesterday was rough.  I cried lots without him looking  I won't get into details. But purchasing one med that was $652.00, and the other $200.00, and the other $80.00 at out of pocket even with insurance to keep him alive.  Money doesn't matter.  It's just a realization of what the hell is going on here. Getting bags of ice to haul that medicine home with him so he can inject himself. Also making sure I keep everything clean like the second the nurse wanted him to sign an authorization for the spinal procedure and began to hand him that plastic pen thing that I am QUITE SURE sick people prior have touched.  And so I blocked it like a maniac.  Wiping it down with my Clorox wipies that I carry.  Standing in front like a guardsman. Watching him smile at mama bird because he knows it's my ammo.  He knows I am me. 

Because that is what I am.  I am a warrior.  I am fighting for him. With him. 

Because that is what I am made of. 

Because as I told you all once before, and I will say it a trillion times.  Until my last dying breath. 

I will give every ounce of ME to my birdies.  

I am exhausted. Again. But nothing in comparision to my baby.  Nothing. 

Pray for him.  Pray for my fighting strength.  That I keep my mouth zipped at times when I want to rip peoples faces off.  Pray that I keep my hands to myself when I'm in warrior mode. 

Because I am a lover.  

For my babies. 

Forever. 

I will try to update, but I can tell you, my world is scrambled.  

Big love to you all.  Let things go, because life is so so delicate.

This Mama Warrior.  

ps. Keep the assholes out of my way.  Thanks. 
pss-  Friends and family of Kris?  text him.  He's sicky but needs love people.  Send him love.  It's what makes this fight worth fighting. 

Happy Friday

Here's to a cozy weekend, full of love and comfort. 

Do what makes you feel the best. 

Never settle.

And be kind to animals.

Big love,

This Mama Warrior Lisa

 

More Truth.

Kyoko, thanks for this reminder today.

I've loved our friendship from day one.  And I will always cherish you.

Along with all my warrior mama friends.  You know who you are.  Thank you.

Thank you Shelley and Rox for the nice chat last night, and the amazing vino.  You girls crack me up during my most frustrated end of the day scrambled egg brain.

Happy Thursday...stay cool, and be thankful for all you have. Simple life.  Don't look at the big stuff.  They really mean nothing. Without life, and health, material is the root of evil even when we think a plush life is the best life.  It's not. 

Love to you,

This Warrior Mama Lisa

On Waiting.

Have you ever had a date you were planning for, and you like counted every step closer to the day like a welcomed rainy day.  You wake, you look at the calendar and you can't wait for the next one.  Because it's closer to the day you can't wait for. 

Except I am counting the days in the opposite affect. You know, like when you go out of town on a MUCH needed vacation and so you count on your hand all the nights you get to sleep there...

 I don't want Monday to arrive to check back in to Kaiser.  To watch him lay in that darn white bed, with all the beeping buttons, and that iv cart holding the fluid that will run through his veins. 

 

The highlights of course are getting the chance to see our favorite nurses again.  Like Sylvia and Paula. 

And the housekeepers that became my friend...and the food service folks who would deliver Kris' food and smile, some saying they will pray for him.  I'm sure the guidelines in life would prohibit them from doing so, but they did it anyway.  Always smiling at him with all his tattoos and a mama bird that stood by, thanking them as they confirmed his medical record and birth date. Sometimes just delivering one "Boost drink".

I don't want to get that nervous feeling in my tummy as they hook up the chemo. Or the jitters I know are bound to happen when my phone receives a text at night.  

I keep telling myself that "Every Little Thing Is Gonna Be Alright"-   I really have this feeling....

Now if I could turn the creative freaked the f out brain off at night, we'd be in the money. 

It's climbing the mountain.  The what if's and all the bullshit that comes in between.  

So while he enjoys the ocean and the fresh air on this planet, I'm gonna try not to count down and look at my calendar as a scary thing. 

It's one step closer to the mountain we need to get over.  

Happy Humpday lovers.  Get ta' humpin...like at work. Or the gym. Or your lover.  Whatever floats your boat. 

This Warrior Mama Lisa

To my Dodger loving family and friends...HOW BAD ASS was your WIN!

Boats and Banks.

 

Hey friends!

Last weekend Bill and I snuck away for a breather.  To our favorite lake nest home. 

It was just us. 

A place where we could hide in our favorite cove.

No one around, just us to float, laugh, cry and blast our Bad Company. 

When we left we knew we'd have a week in between treatments.

A time where we could pretend like life was maybe a tad bit normal.

It's all fun and games until 2am when I wake up and walk around in the dark with that same "what the fuck" feeling in my head.  I hate it. It happened there, just like it does at home. 

It doesn't go away.

But, I pray. And I ask for forgiveness for my dirty mouth.  And I ask for Mercy from our Holy God to please let my son move through this already hard life with at least a little bit of mercy on his soul.

He went fishing on Saturday.  To say his first text to me at sunrise was a true blessing is an understatement. 

I mean, it was so sweet to see the video of them idling out at sunrise. 

I'm sure for him, the smell of the water, the boat, the noise of his friends getting all the gear ready.

All of it. 

He needed it. 

A little slice of me was of course worried.  About his port.  About getting bumped around.

About the rest his body may need to fight the next round. All of it.

So the messages whirled around between our family.  Happiness. Smiles.

Yesterday I had to drive him to a Sperm Bank to do his biz. 

It's an awkward moment that must be handled.  In order to get through this next phase and 

have children some day, it was a must. 

Our silly ways made for some good laughter.  Especially on the freeway where we passed a plumbing company truck with a logo "Drain Fast"-

So his little birdies are being evaluated to see if things haven't been damaged thus far. 

They will be stored in West LA in an amazing company called Cyrobank-where they make dreams happen for many many people.  It's money well spent, lets put it that way.

Kris' next round of stronger chemo is next Monday.  Where he will check himself back in for about a week, maybe more.  Just depending on how he does with this round.

On our way home yesterday he pulled a few stubby hairs and said "look mama, it's finally falling out all over"

It made me want to poop. 

I hate it.

All of this. 

But one thing I know for sure. 

Cancer picked a fight with the wrong family.  This mama will fight like a mo-fo to get him through the next round.

Praying for a match.  And that call.

I do know that City Of Hope has our back.  And from the few calls we've received, I just know they are working behind the scenes.  For him. And for the world of cancer, and major illnesses.

Big love to you all.

Be good, and love hard.  Spread peace. This world needs it. 

This Mama Warrior Lisa

Strong Birdie.

You know those moments in your life where you are up against something like...

A root canal. 

An appointment procedure that is just down right shitty. 

Like a Bone Marrow Biopsy and Spinal Tap/Induction of Chemo Procedure. 

You know....a little scary. 

Wednesday Kris had a bone marrow biopsy.  And a spinal tap to draw fluid, and add back some chemo.

One, to get a sample for COH oncologists' and second, to make sure chemo gets up and around his brain to push cancer out.  

As we arrived for his 1:30 appt, he was beyond nervous.  But the way our family rolls, we had an army waiting for him.  

I arrived to find my Aunt Lynda pulling in. My sister already there, and my other Aunt (Surrogate Mom) Nettie already sitting in the waiting room. Bill walked in and the six of us took over that little corner like it was our business. 

Kris and Jen walked in with smiles.  Although I wonder at times if he is too overwhelmed with us all there.

I truly believe that an army of love and support is the key to healing.  And fighting the C word. 

The procedure went as planned.  Bill and I were again pulled into another (3rd time) social workers office.

For the record. THEY. BUG. ME.  So much so, that I told my family if I had more time in this life I would want to restructure that darn title and put some LIFE into it.  They seriously hand you every bad scenario imaginable, sit and stare, with a sad frown and hand you more...and are ready to hand you tissues.

I looked down at her calendar and on today's date it said "Funeral"--Anyway our topic was Sperm Bank info. And Advanced Directives.  Both topics I've had in my possession. Both topics I've covered.  The only thing I've yet to do is sit down with Kris and ask him stuff for that said Advance Directive things like....oh...

if you can't breath, do you want life support.  If you can't eat, do you want tube feeding.  If you are flat lined do they bring you back....Stuff that I am avoiding like washing my cat on a sunny day. 

I will get to it.  I have a week more to do so.  

And so....

Moving on.  We have an appointment on Monday in West LA-Holla-----

to donate his little swimmers, and my future grandbabies...(but don't tell him this because it stresses him out that I worry about this stuff)-

He will be on a break from induction until October 5th, where he will check himself BACK into Hotel De Kaiser for another round of STRONGER chemo, and will stay there about a week.  Maybe more, maybe less.

Until then I am getting my other ducks in order to get a huge fundraiser going.  Which will require a committee. 

The doctor mentioned to my Aunt in the room during biopsy "you have quite a bit of family that follow.."

Um, that's like 1/16 Dr. Chen.  

We are a warrior family.  We support and run to the wounded.  We will be there in his brightest days, and we will fight in silence during his darkest.  Aunts, cousins, brothers and sisters...across the states. 

We are here. 

I feel their love.  It's because of them that I can keep going.

Last night we sat on my porch and of course we both quiver lipped and he said "Mom, the only thing I told Dr. Chen, is it makes me the saddest when I think of you"-

Turning those tables, I can imagine.  I would NEVER want to leave Kris and Kali to endure these days and nights of haze.  Sleepless prayer, walking in circles praying, wishing, and hoping that Faith and Mercy will play a role in getting him better. 

From the moments I heard him cry and that little dimple that early Thursday morning I had him.

I promised to fight for him.  

Happy Weekend to you guys. 

I'm gonna bow out for a little and take a breather while he takes a breather.

Don't think for a second that I have put my weapons down. 

Peace and love to you all.  Kiss your babies, and text them.

Always leave notes.

"All my days and all my nights I will love you til the end of time...."

A Helpful Link

Several times a day I get asked by loving friends and colleagues. 

"How can we help"

What can we do to get tested, and find out where to "Be A Match"

One thing I know for sure through this process is donating blood, and any blood product...It saves lives.

It saved Kris. More than once. And will continue to do so.

At least ten times while in the hospital they administered Platelets.  And blood.

Without those little lovers he wouldn't be able to continue on in various procedures.

Donate Blood....

The Red Cross 

To get yourself out in the world to save a life....

Be The Match 

Continue to keep him in your positive thoughts.  In your prayers. 

Pray that during his darkest hours that he finds solitude knowing that we are surrounding him with love.

That he knows his Mama Warrior is searching and finding the tools to get him through this. 

Friends, be patient with me when I don't reply.  Or I don't reach back out.

It's something I can't describe. I'm holding onto the only thing I have ever felt safe holding on to. 

My partner. 

My rock. 

When I can't be the rock, and I crumble into a million pebbles. 

Go spread love. And Kindness. And smiles.

It makes this hard life so much better.

"You never know what that person is going through"-

Peace.

This Mama Warrior.

 

ps: My friend Beth a donor recipient with 6 years under her new birth belt told me yesterday that the day they get those stem cells flowing in to your body the nurses come in while induction is happening to sing "Happy Birthday"- 

You guys.....melt. me. 

I lost it when she told me this.....

Two Sparrows

Two Sparrows In A Hurricane....

Remember What I Said?

About that shitty roller coaster ride that I want off of?

Last week Kris had his chemo appt on Wed.  Everything, seamless.

Thursday morning I told him to be ready at 7:30am for Sunset Kaiser Transplant Team meeting.

Off we went.  Coffee in my hand, take-out breakfast in his lap and down the 110 frwy we went.
Things went smooth.  We arrived 50 miles jk--from where our appt would be, but our trek was like any other.....good. He followed me, I paved the way.  Up to the 8th Floor to Oncology where we see my Aunt Annette- "Nettie"-and Jeff.  There she sat with the fundraising box of goodies we WILL get to very soon- . (Thanks Janine and Dom)

We get called back into the Oncologist Doc that works directly with City Of Hope.... and so began the unraveling of words.  Words again that gave me that lump so high in my throat, and so deep in my stomach that I wanted to puke.  The room became dizzy again, and the rollercoaster ride drop was exactly what I knew would happen, only I thought for a split day that maybe, just maybe they'd call us in and tell us, that HIS diagnosis was easier.  Or better.
He has a complicated inherited leukemia.  But not complicated enough that others haven't been through.  And won.
And so she went on and on, and we sat and listened, and I occasionally glanced eye to eye with my Aunt, almost in shock again, but held on to my chair because this is life.  And this is the life we were handed.

Her exact words are WE MUST find a match.  And he's a good candidate and I want you back here within a month at least to get this going.  WE will search our data base that will include North America, Canada and WORLDWIDE.  We will also sort out the possibility of retrieving cord blood with a close match to your HLA because your sister wasn't a match. We will test your Biological Father, and your Mom.  Mom will be the last option because after bearing a child again after you (Kris) she built Anti-bodies.
Again...we just sat and listened. 

From there she stated all she needed to in her matter of fact way...and said, "now you will move to your Transplant Team Coordinator, Teri"  We scooted a door down and sat in Teri's office where we were filled in with more good scary stuff.  I had to sign forms stating I will take care of him on exit of the hospital. 
He will undergo the most intense procedure that a HUMAN BODY can take on.  Before he leaves City of Hope, he will have intense physical therapy.

From there we stepped next door to the Social Workers office that literally makes you feel like death is sitting in the NEXT room, and Kris and I had to sign some of the scariest papers ever.

Soon I'd be sitting in a lab while they drew vile after vile of blood.  Cute part as we left he patted my back and said "You ok mama"-

I'm fine, bub.  I'm fine. 

Long story short, they are fighting to get him a stem cell transplant asap.  We left there after 4 hours and walked to the car with all the air knocked out of our guts.  Trying to smile through Kris' fears.  Things we had to talk about like "Directives" and "Sperm Banking" and "After death planning" and stuff that you never ever in a fucking million years think you have to talk with your birdie.

We hopped back on the 110 fwy in a solid mess of sit still traffic for him to say he "had to go pee"-
It took me back to his toddler years of potty training when "when it's time, it's time".  I scrambled across a parking lot fwy and jolted into the first gas station somewhere in the grossest of grossest part of Hollywood.

He walked into pee, and I lost it.  That feeling of so overwhelmed and so scared that you can't even share it with him back, because he was feeling the same way. And I need to be the strong mama that says we are gonna take one day at a time. 

Side note I verbally said  to drab Mc.Scary Social Worker---We are taking this ONE.DAY.AT.A.TIME.
As I shoved every fucking printed and signed papers in each folder they belong to in my SOCCER bag.

Back on the good ol' streets of LA through Downtown, as he wanted street hot dog and whatever else made him smile.  We did. Kinda like that last hoorah's of giving zero shits because he just wants to taste something good and pretend for the next few weeks that the next few months are going to NOT be the hardest part yet.  And yet we know.  We all know.

We found front row parking on some ghetto side street by Santee Alley in the heart of Downtown LA.
Smiling as we hopped out trying to push back the last 4 hours.  Sharing a hot dog and a Mexican soda. 

Arriving home, I dropped him off.  Cleared my car of his goodies, and again drove down PCH in silent awe.

I drove home to change. Poured myself a glass of wine.  Sat there staring out the window at the birds flying carelessly over the harbor waters.  Boats coming and going.  And I bawled my eyes out.  Again.
I didn't want to talk on the phone. I didn't want to text anyone back.  I didn't want to check on the fire that was running pretty close to my parents.  I didn't want to look at my soccer bag that has now turned into complete research hospital medical file mode.  I didn't want to get up. I didn't want to go to sleep.  I just wanted to sit there and cry.

Bill came home.  We sat there and cried.  We have a HUGE hill to climb over. 
My apologies to those I may have offended. To my sister whom I bit her face off Friday night because I am tired. I can't answer questions I am still not clear. 
I can't answer all the texts.  That's all I can do. Go on BETHEMATCH.ORG
It answers so many detailed questions.  For us and for you. 

Today I was driving to the bank, and a lady called me from City of Hope. Asking my relation to Kristopher S. 

"I'm his Mama"-

She said..."Oh, ok.  Thanks, that's all I need right now"-

All I could think of is they are working right now. Right now as I post to you.  To save his life.

This is a fucking roller coaster that I want off, and yet I am buckled so far back in the seat that moving or even wiggling isn't an option.  I am trying to keep on top of things. Normal living things. Like groceries.
My dirty fridge.  My favorite ten pairs of underwear that I rotate and soon run out and FINALLY have to do laundry.  And I walk in circles in the morning.  And if any of this makes absolute nonsense to you.  I get it.
Don't read further. Poor Bill can't do anything right but just hold me.  And hug me tighter when I melt.  He can't grocery shop, he can't drive, he can't cook.  jk- No, but seriously I am a barking freak right now. So he patiently says..."hun you just wanna drive"  - Crazy when friends offer to help, and deep down, I just need to sort this stuff.  Feeling your love, I do.  But I can't have you wash my unders.  Or clean my house.  Or cook. Really, I just need to sort.  It's in my veins.  Remember...I am a warrior.  Just collecting more of my weapons.  Gearing up for the next round.

This roller coaster is hard.  Like today when he sent me a first of the morning next.  "Mom, my hair is finally falling out"-

Or, "Mom seriously this is horrible I can't taste anything at all.  Just salty hot sauce type stuff".

Or, "Mom, I hope I can make it through this, because I am so weak"-

I am too.

And I am sorry for the lack of blogging, or texts back.  Or phone calls for all of you wonderful loving people.
I thank you for offering everything and anything and any time.

It's hard to wrap your head around my thoughts right now.  Sometimes I just need time.  To focus on him.
And this.

This week he has another Bone Marrow Biopsy, and a spinal tap.  This answers more questions of how many of the cancer monsters have been knocked down since round one of 5 of chemo.
We wait for a match.
We wait for new changes in him.

We hold on tight and love on him. Spoiling him with any food he loves.  Because that's just what we do.

If you want to help him, stay tuned.  We WILL need help.  Like the dark times when someone just standing with a mask on in his room at COH, with light in their eyes of hope. To push him.  Because look at me kids...HE IS GONNA NEED IT.

But next.....I'm off to fill out forms to store his little little birdies.

Until I can get my head back out of the fog.  Pray for me kids.

I need it.  He needs it more.

Come on Stem Cell match.  Lord, hear our prayers.

This Warrior Mama Lisa

ps.  I've learned this much so far-  Chemo kicks him in the face and gut 48 hours after induction.
My heart breaks to see him so skinny and weak.  Friends love me harder than I ever imagined, and yet I still isolate myself.  Sleep sucks and nighttimes are overrated.

I do hear you all. I do.  And there WILL come a day that I am gonna come running to you.
Be ready-

One. Day. At. A. Time.

kiss your birdies every single chance you get.

College bound and dorm kids tucked away?  Good for them.  Good for you.  You did it.
Be proud.

Steer clear of this rollercoaster ride.  I hope you're too short to ride it.  Or big.  Or whatever. Stay away.

The Answers You Want.

I mentioned to you all about how nervous I was looking through the many cancer pamphlets left on his bedside.  I literally would take them in my hand.  Roll them up.  Flatten them out.  And slide them right along with the other medical paperwork that had his medical record and his sweet little name I gave him. Kristopher.
Except I kept wanting those pamphlets to not belong to him.  His mama didn't need to read them.
Any minute a doctor would walk in and tell us that an infection was strolling through his body.

Wrong.

Those pamphlets have made their way to my desk top. Along with more research online. I only go to reliable resources, because I can't look through pictures of stories that show people who didn't make it.
Like on instagram when people hashtag his condition and you see....hard hard stuff.  It makes my tummy instantly want to empty.  So I don't go there.
Right now? I am researching the latest findings.  The best doctors, and trials that have proven to save my 26 year old dude.  I want to make sure he can produce grandbabies for me.  I want him to enjoy the long life he deserves.  To look back on this one day with one big head shake. I want him to continue to be successful.
To love and be loved.

We know Kali isn't a match.  Tomorrow we meet with the Stem Cell Transplant Team on Sunset Kaiser.
The place where all the heads of hematology and oncology meet.  It's the place where his original marrow biopsy was filtered through. Where someone labeled a little vile, soon reporting to Dr. Chen. Its the place that doctors go to and from City of Hope.

Tomorrow we go there for answers.  And questions.  Lots of questions. 
Just me and my Bub.  Traveling in the grind of traffic through LA.  None of that matters. Just sitting next to him. Looking for his little dimple and silly ways.  His Mama. Mama Bird.  Mama Bird that wakes up all night every night and still operates on adrenaline because I am a skeptic.  With Cancer.  I see all the F Cancer around me in stickers, hats and shirts.  It makes me sad actually.  Why can't we find a cure.  Why does it come after the good?  Why do I pass tweekers on the streets, or child abusers, and animal abusers come on the tv free from this horrific disease.  Why?

I'm just looking for answers. Tomorrow.

To my friends that I hold close to. Thank you.  Even if our wino days have ceased for me lately.  I love you.

Family, you are my rock.  Even when I can't talk because my lip quivers and you can't stand to see your mom cry. Or when I'm snappy because you want a back pack and I am researching something or trying to keep a company surviving.  I love you.

I am Mama Warrior.

"Trails are what made me strong.  My imperfections make me who I am. My friends are why I act the way I do. My family is what keeps me going in life. I live for myself, and my children. Being this way gives me my strength to go on to tomorrow"

Pray for our trip tomorrow and for some assuring answers.



Mama Warrior Lisa

Just Another Day.

This morning turned out to be just like all the rest. Like a little slice of groggy normalcy.

Except for this one started at 5am with Kali packing her car to head back to San Marcos.

I made her favorite salad, and packed all little yummies a mama does for a trip back to reality.

I picked up Madie and Kali from the airport at 4:30pm yesterday to be filled in with all the deets of their epic trip to TCU.   They both agreed that they will be back.  Sooner than later.  So much silly-ness.

Here's a few.  

We'll leave the rest for another day, and another time.

On Saturday Kris and Jen came over with cravings for Mama's homemade salsa.  

His eating game is still on fire.  With the exception of water, in which he needs LOTS of.  So he adds some stuff to it for flavor.  Metal mouth is real.  

My texts' throughout the day are constant reminders about meds, and water. 

I found that mesh stuff to cover his port, along with a medicine dispensary thing that has sun-mon/morn-night...type thing.  And as much as it seems these are trivial things, they ease my mind.

Jens birthday weekend. Where friends and family had planned brunches and parties a month ago. He rallied. But most of all, they rallied around him.  The love from her family and friends is surreal.  Just as much as we offer on our side.

It breaks my heart to see his eyes and body changing by the tone of chemo, but I must remind myself that cancer picked the wrong family to fight with.

We will keep pushing back. 

Today I am exhausted. I truly am.  The kind of tired that you want to curl into a corner and just sleep. 

Only I can't.  I am still fueled by adrenaline and will continue to find whatever is the best of the best.

Just this morning I finally had the courage to open my first Pdf File on Acute Lymphoblastic Leukemia.  

He also has Philadelphia Chromosome which is addition to. With proper care, it's an addition to treatment.  For who knows how long.

Each time I would try to read I panic and back out. 

But today I felt at ease.  This week will give more answers.  More proof that doctors are trying to save people by medicine.  That they DO care about my boy. And because they know WE care and that THIS mom is reaching, and praising, and learning and asking and smiling through tears, THEY will help US fight for him.  Will he be cured? Can this nightmare go away forever? I don't think so.  Yes, they can push it far into corners but you know....the what if's.  It's easy when it's not you, or your loved one to say "hey leese he's gonna be fine, look so and so lived ten more years" and I truly, 100% respect all of this. 

It's just when you're in it.  When you look at the reality of the doctors faces the day of diagnosis, or the nurses that said "'I'm so sorry"-  You question things.  

But you move on.  The trauma becomes reality.  The reality become normalcy.

The normacly becomes your fight.  It envelopes every single hour of your day.

Friends invite you to boating gatherings and wine sipping.  And right now?  My head isn't there. They understand.  They send their sweet messages and pictures.  And I love them.

I feel most safe with Bill.  I feel most safe with the kids. And I feel most safe at home. It's funny, I always have.  It's the only time my phone could be wherever and I could care less.  As long as my birdies are with me. 

I feel safe at home.  I wish I could escape and run from it all, but I can't.  I am a robot. I will fight. As I have my entire life. 

For my kids.  I will fight. 

The road will be rough. I know that.  The word Remission really means nothing for me. I want CURE. 

On Saturday before Kris and Jen left he non-chalantly mentioned that Dr. Chen said "Kali isn't a match"-

My stomach flipped over. Almost like when you get knocked in the gut and you can't breathe. That kind.

I quickly thought "what the fuck, why didn't Dr. Chen call me, and tell me or let me know..why"

And they a realized he's a big dude now.

I again panicked. 

For a minute.  Then I pulled my hair back again.  And said....It's okay....we'll find the next best thing.

We will. 

We'll find a match.  We'll cross over the next bridge that is front. 

Together we will.  All of us. 

Happy Monday. Pray for my boy through this week.  For strength. For continued faith.  For smiles when at times he's alone and I'm sure scared. 

For my tired ass body to get up and with it.  

Pray that I am nice to people even when I really feel like otherwise. 

For when the value of a dollar that we all need so much takes the place of humanity, to remember where our true value is.  It's just gonna be a longer road.  

We have one shot kids.  Let's do this.  

Love to you all, especially to my family and close friends. You know who you are.  My rocks.

This Mama Warrior

PS. And to add more poop to the clogged toilet, my parents nearby town is on fire.  Their cars are packed, both on high alert, and waiting to run.  Butte Fire (Amador County 30% contained)-We all have our shitstorms to deal with, this is theirs.  Crazy how we both can't do anything to help the other.
Except------> PRAY.  Pray people, PRAY. 
Lord, please have Mercy on us.  I know you hear us.  I know you love us.  Have Mercy on us.