Day 11 (Sunday's post...)

Were you guys like...."Hey where'd she go"?

I woke up yesterday morning before dawn.  Sipping coffee in the dark.  Praying, and sitting still in my house. 

Knowing as soon as the sun came up I would be out in the garage cleaning it out. Kind of waiting for the temps to rise too.  Anything over 45 degrees. 

I also worked hard on every single cupboard, and closet too.  Clearing, and cleaning.  Bill finished installing Kris' blinds on Saturday.  A dark wood for his delicate sensitive eyes when he comes home.

I managed to part with things I've held onto for too long, old clothes, trinkets, boxes and boxes of just stuff. 

Pictures, and gadgets from the kids....and when I say gadgets, I'm talking their little paintings, and various things from Kindergarten! HA!  Like, when is it appropriate to let this stuff go.  When you live in a little space, you find that collecting stuff, becomes a hoarding situation.   

And so....

I purged.  Designer pictures from my baby birdies that could of been sold at an auction....lol

Jen texted me in the morning saying that Zack was there, and Uncle Wayne would soon be there.  And that she would be running home for just a short while and back.  She said if I felt okay with it, that I should just take the day for me. And he was fine. 

And what a beautiful day I had.  Cleaning.  Organizing.  Wiping.  Washing every thing down.  

Had lunch with Bill, and caught the games...

Kris ate almost an entire grilled cheese.  AND soup. Holla!

Counts-  YESTERDAY

WBC 0.6

HGB   10.3

Platelets 29.4

Cr.   .42

I'm headed there soon.  Getting some work done, and clearing my desk.

He said he's a little lonely this morning.  Waiting on a GI Doc to come by to see why his stomach issues continue.  

Today is Day 12.  I will post when I get to him...

Happy Monday-

This Warrior Mama Lisa

Day 10

Well......

Stems woke up and made their way to where we hope they'd go.

Counts-

WBC .04
HGB  10.8
Platelets 21
CR. 0.43

I was able to get my margarita last night, got home, showered and climbed into my bed with a peaceful feeling. When I left last night he was in so much tummy pain. From what I can see, is the radiation effects fried his insides so bad. Starting with his mouth. Through the throat, and now down to his stomach. Each time his stomach would create a spasm Kali would remind him to breath it through. So crazy you guys to watch my youngest help her brother breath through what looked like a contraction.

While drying him after his shower, his little waist is so small, and his legs are stick thin.
He was trying to dress himself and put lotion on...until finally he asked for help.

This morning he texted me at 7am. "Mom...  .04"--
And then...will you call me....
A doctor just came by and was concerned of the diarrhea output. And his labs were being reviewed..
All of which scares Kris. He does well with a system. Meaning the same crew. The same docs. The same pattern. When someone else comes in, it spins him into a panic.
And some talked through it.

Bill and I have been gathering our twigs, twine, sprigs of nesting to finish his nest. Today Bill installed new wood blinds and I continued to purge and clean things in preparation for his delicate homecoming.  This morning we worked in his room. My car was being serviced and would be ready by 1pm.

Kali packed her car to the brim, and off she went. (I had to slide into my room and let a good cry out. I will miss having my little buddy with me here and at home) First stopping in Seal and spending time with her friends in HB. Next week is back to the grind for her. She's taken on a big load this year. I'm confident she'll nail it.

Just like Kris will pull through this.

As I type he's chatting away with my Auntie Nettie. He's hazed on meds, but he's content. He's mentioning how happy he is that counts are climbing.  He feels it. This mountain. He's almost to the top.

Your love. Your positive vibes. Your peaceful wishes and prayers.


We feel em. We feel you.

Peace and LOVE..

This Warrior Mama Lisa

Day 9

Well, after making through yesterday, and falling down the hill of the tallest rollercoaster. One of which I thought was gonna push me over the edge. I've heard that during this journey consists of physical and most intense the mental. Not me. Him. He didn't want to tell me, but did this morning. He cried yesterday afternoon pretty much off and on. Texting me this morning after having a dilemma while on the pot, and started to choke causing him to hit the panic button for the nurses to come in and suction him.

Meanwhile, he's telling me that today will be a better day. His face swelling has gone down. He still has a minor rash and some red bumps on his face but feeling rather decent as I sit and type this.
He's watching a show on fishing and pretty excited about owning a salt water fish tank someday. Something I'm gonna zip my lip on because.....HELLO maintenance...but I just smile and with squinty eyes through a mask that hides my lips.

He still likes the windows closed. I don't know which is more challenging, closed windows with an amazing view, or a mask and gloves that steam my glasses, and make me type typos like a boss.
Anyway. From the looks of today...he looks like he's making a turn. He told me I look pretty today. He also thanked me again "for being here and all I do"-
He will never know why until he's a daddy some day.

The hospital is so in tune with these phases, that they come in and can magnetically change the pictures in the room. Because they know isolation and the mind screw it causes.
Think of that. He chose the one that reminded him of a lake that would have Bass in it.

We began this process with his cozy blankets. His favorite beanies. His favorite socks.
And today?
No blankies. No beanies. And "socks suck".
And that's okay that socks suck, because you know what? Fevers have stayed away. So socks, you stay in that drawer.......ok?!

How's the full moon treating you? Any one starring in Shark Week? *raises hand, shoves another M&M in her mouth*

Anyone want a strong margarita sitting on the back of your boat at the lake?

Or, shoot...a margarita sitting anywhere.....raise your hand.....*hand raised*
Keep it up high...and make the best of your Friday night. Thank your body for good health.
Thank your support system for those that help you through the hard days.  Erica. You girl.
To my best friends that text, and back away because they know I haven't put down my weapons of protection. You. You, my friends....we will sip wine this summer and put the tickets to this rollercoaster in the trash.

Drive safe, and love hard. We are not guaranteed tomorrow....
One phone call can change everything.
Everything. Forever.

Happy birthday to John Jacobs. We feel your prayers.

And tomorrow and the next...and the next....counts will rise. At least that's what we pray for.
Counts-
WBC 0.1
HGB 9.8
Platelets 18
CR- 0.49
More lipids (fats added via IV) added with his TPN (nutrition for survival)

And two bites of soup today!

Love, and lots of peaceful patience to you all....

BE KIND.


This Warrior Mama Lisa

Update Day 8

As my afternoon was coming to a halt at work and the texts from Kris started to lighten a little, I began to feel anxious. The typical anxiousness that comes from a mama that hasn't seen her boy all day and he's in the most critical time of his fight for life.

He sends me a text. "Mom I'm still sweating so much, and they took that pad off my bed".
And then he send me a picture of his eye. "And look, my left eye pupil is completely dilated".

My legs became weak.

I called up to the 6th floor west for our nurse Ava. She explained that his meds were adjusted and he's in the hardest days, and on and on she went as I began to cry like a baby. Trying to reassure me as I'm 50 miles away...

And then...Dr. Stein called.  He had went to Kris. As per my request. He currently has no patients up there. But stopped by to check on things. The timing couldn't of been better.
Kris sitting in panic with sweats, a dilated eye, rash and overall feeling doomed.
Dr. Stein laid it out. Your eye is from the patch (goes behind ear for nausea) you touched and must of got into your eye. Your sweats are increasing because of meds being adjusted. Taking some down a notch.
Your counts are in the lowest range because they should start climbing this weekend or next.
He's a stern man. With an assertive demeanor. He put a warm blanket of soul comfort on Kris during a time that he needs it.
He then called me. Again, reaffirming the days. The meds. These things happen. This is the path. Again, stern voice. Dr. Stein. Whom I hold the utmost respect for. His diligent demeanor and return calls to me. His passion for not making comfort in phony form, but science and medicine.

I'm headed to drop my car off for repairs. Another reminder that owning a Volkswagen will most always give me shit. I love me a VW, but these service lights bite.

Hope this update give you the moment, and picture in the day of a path in transplant.

I can't look at the eye picture for a long while that's for sure...

Come on stems...
Love,
This Warrior Mama Lisa

Day 8

I'm currently at work finishing up W-2's and made one more run to Staples because I forgot to order the envelopes that adorn them.
If it's one thing I get stalked during the end of January, it's for W-2's.  I can't blame folks that are looking for a refund they've worked hard for.

Bill went to the hospital bright and early this morning.  Arriving when Kris was in a more perky mode.
He also sent me a text last night pretty late that said he "just woke up and was feeling really good, and thanks for walking through this with me mom, I love you"-
I was kind of shocked because when I left last night I felt at ease.  However with as many meds as he's on, and the shitty feeling inside, and outside he's dealing with, I can only imagine the illusions he's feeling when dealing with others.  Mom.  Girlfriend.  Sister.  Friends. Social media. Nurses.  Doctors.  Assistants.
Even a nutritionist came by today giving us vouchers for the Bistro.  And the cafeteria.  He's elated, and wondering why....
Imagine how his poor little head is swashing through this storm. 
The last few days are filled with severe itching, and diarrhea.  Both are cause for concern if his counts don't start to move and climb up by next week.  There's something called Engraftment.  This is when the stems get into the body, move to where they "think" they should go, but haven't quite moved to the major spot. The bone marrow.  When the doctors arrived today, with Bill present they mentioned casually about the amount of output yesterday, and they'd start to be concerned by next week.  Kris felt they were "hiding" something.  Bill said, it felt hopeful.
I had the same vibe yesterday.  Remember when we got on that roller coaster, and we strapped in, but we really didn't want to ride that ride.  But we had to?

That kind of day.

I had sent all of my mama goodies....telling Bill where to put what.  How to wipe the door knobs just in case.  Where the wipies go making it extra easy for him. 


Kris then said for me not to come because Jen was coming early today.  You know my heart and body wants to be there with him.  He's also sad looking at himself in the mirror.  More tears today after I sent a picture that Bill sent to me.

They made him get on a therapy bike today.  Although the picture made him so sad, I wonder if someday we can look back on all of this as one big mountain that HE climbed.  By himself, WITH the help of us. All of us.  

I felt like a jerk for sending the picture.  As they say in the land of parenting.  Especially in a crisis.  We never know what the exact recipe calls for.  We just react with what we think is best.  I initially thought he'd like to see himself up and out of the bed for once. 


Shitfest......

I keep reminding him that HE WILL PULL THROUGH THIS!  

I left a message for my back up doc today, with hopes he'll call me this evening, or stop by to see Kris.  It's always reassuring to see that someone else is peeking in on him.  Especially the best of the best.
I'm praying that by the weekend, or early next week his counts will start to climb.  That each day will be better day.

My engine light came on this morning. 

And guess what?

There is NOTHING IN THIS WORLD THAT WILL MAKE ME BETTER THAN TO JUST SEE MY BOY BETTER....

Engine light. come on v-dub.  Come on.


Counts-
WBC- 0.1- (we need prayers for this to climb by next week)
Hgb    9.8
Platelets 23
Cr. .42

Best Friend stops by to give LOVE ----

Peace and Love,

This Warrior Mama Lisa

Day 7 - One Week

A week later post transplant, and he feels worse today than the others. When you talk to people who've gone through this process and or nurses here...."He will get much sicker than better". And that is no joke kids.
And so this morning after my tossing and turning night I woke at 5. Started my coffee and checked the schedule of the full moon. Guess what kids? It's this weekend.
When you have major responsibilities at your work place, and your son is fighting for life, you are more torn than you've ever been your entire life. I stood staring at myself in the bathroom mirror. Work? Hospital? I began to cry...to which I can thank "Shark Week" for making its debut this weekend as well.  I am drinking every natural supplement short of vodka to avoid a dynamite Lisa. I am fighting it. I packed my bag. Told Kris I would work a little and then head to him. To start thinking of foods. To which he responded everything sounds good, he just can't swallow.

I went to work. Answering questions. Sorting my world there. Prioritizing what's super urgent and what can wait until maybe tomorrow. Paid bills so employees have jobs and answered emails and voicemails for the same category. Sales. Even though my mind is just as scrambled as the first days of diagnosis. I try and fight it. I have the most amazing girlfriends that want to scoop me up for dinner and a glass of wine, and I can't. I won't. Three places until my boy has stems that are beginning to grow. Here. Work. Home.
I feel safest with Bill and Kali because I don't have to talk. I don't have to discuss counts. Next steps. Fevers. I can cry. I can be a bitch. Jk, but you get my drill.
These days are hard. Just like today when I walked in and even though he's glued to his phone and laptop he stops to share with me how the pain and itching feels like he can't go on. He begins to cry. I begin to cry. And soon Kali brings up something about Bucksie.

I clean his little side table, reorganizing each tube for itch. Each mouthwash gets wiped. Tissues thrown away. Dirty clothes put in my to-go bag. Soon sitting in my famous little chair here by the window (in which he lets us open today).
He looks swollen, red, and red bumps cover his cheeks. The thing about not having counts, is any little follicle becomes infected. Inside and out.

So...my soul is tainted. My body is tired. Not physical, but mental.
These critical days are no joke. A spirit gets broken down harder and more intense than I've ever imagined. Cancer is a fucker. It tackles a family amd wrestles them to the ground. It's made my son be so incredibly rude to helpers.  To people he loves.
It warms my heart that he has his social media to keep his spirit going. Those pictures he's taken this past fall out on the ocean. The days where he layered up and jumped back out on the ocean.
The many pictures he's captured of his girlfriend and their dogs. Their smiles.
The parks. The life out there.

We are holding together as strong as we can. We are trying to work together with schedules.
Everyone is pulled tight yet we know why we are exhausted and do what we have to.
When you are a mother, your heart will never be anywhere else, than in theirs.

Send good vibes my way as I embark through shark week and full moon mania.
Pray for yourselves as you cross paths with assholes.

Pray for my boy.

These. Are. The. Darkest days...

Counts:

WBC-  0.1
Hgb  7.9
Platelets 10
Cr. .49

Love and peace,

This Warrior Mama Lisa

Day 6

Today started off with a text to me asking for q-tips. One of the things our family loves, is q-tips. I know they are not good for digging into our ears. And blah blah blah...but he wanted q-tips. And so I arrived with those, and Burt's bees natural wipies for his biz area. Lugging up here was new washed blankies and more unders.

What I arrived to is a very painful riddled dude. Who started to explain to me just how bad this is. So much so that he said he would never go through this again. He began to cry. A good cry that was needed. I sat on the end of his bed explaining that he's deep in the trenches and that if anyone can get through it will be him. That we need him to take each day. Each pill. Each new change of med to help ease whatever is going on. He must NOT give up.

On Sunday his arm began to swell, and told different nurses and one doc. All of which seemed to care yet had Sunday by crazy house and nothing gets accomplished at the rate of Mondays. And so by yesterday afternoon when my sister left he was sassy.
My call to the charge nurse asking a few things. Clean his room, and completely under his bed. Change his sheets immediately because it's driving him crazy with hair shedding off. And where's the ultrasound?!
By 3pm. An ultrasound was done. (Nothing going on inside just fluid gathering because of continual massive amounts of IV)-

Yesterday, was a bad day. Today isn't any better. Depression of pain. Of the unknown. Of trying to hear from others to "be strong man" and "you've got this" when clearly you feel like you're losing your grip. And so when your mom puts lotion on your rash back and the doctors are mentioning engraftment hoping that the new cells are reacting and getting ready to sprout into place.
But you are fearful because you can't believe just how bad this feels. And is the course of action going to get better or worse. You really don't know. But you're hopeful because you are at the best place. With the best doctors.

I will continue to praise, wipe and love. I am scared at times to see him this sick. But I have lots of faith in this.
He's become very forgetful and a tad bit confused. All of which blossom from chemo and hardcore meds. I just remind him and smile.
I'm meeting with our transplant research match girls at 12 today. I have questions about meeting our donor someday. How international works.
Last night I had the worse headache. I felt it coming on at work. By 7pm I curled onto my bed calling it a night. So many things to process. My Dad said the barometric pressure when clouds cover us after sunshine can also do it.
My night was rough. Nothing even minutely close to my boys night.

These days, in the trench are the days I hope his body is able to forget. Kind of like the bearing in childbirth.

Counts-
WBC  0.1
HGB. 8.5
Platelets 15
Cr. .58

May you all enjoy this Tuesday and the kindness in any form from others.

Love,
This Mama warrior Lisa

Day 5

Good morning from my lovely desk in fiberglass land.  A desk that I've neglected to fully acknowledge. 

Especially while my boy is fighting each day.  Yesterday afternoon he managed to shower. That shower was most delicate, as his weak body is so hard to even stand up.  His platelets at 8.  He loves the warm water running down his face. So much so that if he could stand there long enough he would.  But he can't.  

The biggest endeavor is just standing.  

Wash cloths hurt.  Soap hurts.  

As he gets out we have this pattern.  Four towels quickly wrapped around him, and two huge hot blankets to soothe him.  He still stands there shaking.  Because I have to apply an itch helper lotion all over him.  Which makes the whole process even more miserable.  Goose bumps, and mama with purple gloves trying to be as easy as possible.

After we dry up, his cozy socks, unders and whatever t-shirt or thermal sounds good.  I try to lay a couple out.  You know that feeling when you're so sick and you feel like shit and people are talking and asking questions?  Well, that's no bueno. 

I operate on quiet one to two word commands, or questions.  Nothing less or nothing more.  

I've been barked at for jumping up if he's headed to bathroom.  "Mom, stop"- 

I get it.  He sits on his phone and computer but at times reaches out, and opens a nice conversation.  The hard part about being a caretaker is navigating around this. Those he cares to have around, and those that frustrate him.  I never want to be the bad guy.  Just the helper. lol

He crawled back into bed, that was freshly made.  And new clean pillow cases I slipped back on. 

Beanies are irritating to him. 

After getting settled in bed, and he asking that I remove his biggest blanket, he asked the nurse "will you check to see if I have a fever"? 

And fever was right.  101. 

From there labs are taken. A few from port, and a couple from opposite arm.  

He was started on two more antibiotics.  Both of which are broad spectrum coverage.

His left arm still swollen from elbow down.  Prompting me to remind the nurse and charge nurse that I asked about it Friday, and someone needs to page the oncologist on staff to see what's up.  

Jen arrived, with her smile, and encouraging words to him.

I gathered my goods.  His dirty blankets, unders, socks, and pillow cases and off I went. 

Out into the cold Duarte air. As I leave, I always walk to my car praying.  Praying for Thanks and praying for each day I am able to sit next to him. 

My view...IF....he will let me open the blinds. 

Right now they remain closed--

City Of Hope, you've made sure to help save him.  You've given to him more than I ever imagined.  And I've never seen a body become so challenged.  One day closer to a better body.  Praying his body accepts these cells and he can have a forever changed flow of blood.  And marrow.

I'm headed there in a bit today.  Hopefully in time to see the results from MRI being done on his arm today.  

Squeaky wheel.....

Happy gloomy Monday people!

Counts-

WBC 0.1

Hgb 7.8

Platelets 23

Cr: .61

Come on baby......grow baby grow.......

Love to you,

This Warrior Mama Lisa

Day 4

Well, entering day four seems to have shown a small glimmer of hope. Not that we don't live for hope as it is, it's just feeling more like we can see a less swollen face.
My first text to him this morning after creeping his social media page knowing he was awake was at 7:30. His response was "Morning my beautiful mama". He then shared that he still hurts everywhere, but actually sipped a little bit of water. Which is HUGE!
Today he is decent in spirits. Smiling through conversation. Texting people back in between cat naps. They've just poked his fingers because glucose is off. I remember this during round two of chemo. He said he feels a teeny tiny bit better. He's still in the ditches. And he has a very long way to go. The swollen red face from Palifermin is gone, but the lingering effects of radiation is still in sight. With more to go. His hair is falling out, and I find him pulling at it. Something that always has turned my stomach, but really.....whom am I to bitch about it. My goal when I left last night was to find out why he was swollen on his left side. His left arm especially. His left ankle and foot too. They pages the on call oncologist asking for an alternative to Lasix. Which helps flush and increase output. One of the things that needs to be monitored is "output". Without that, our bodies tend to retain.
Something I also requested is to have his pic line checked.
This nurse is good, and caring, but man....you miss your GOOD nurse when they're off.

Last night Bill and I left here for an evening at the race track. Horses that is. The only reason we decided we'd go is because a customer left VIP tickets for us. And it's a few miles from COH. We pulled into the track, finding pretty close parking. Me wearing some cute new shoes. Hair actually curled. And lipstick on!
I see people making their way towards us like the closure at Disneyland. Bill asks someone if the races are still going. The answer..."nope"

We both laugh. Hop back in the car, and home bound we went. I have to say I pouted a little. Just
because I wanted to sit in a new different environment and have a stiff cocktail.

We had dinner close to home, and our night watching AZ win, was probably meant to be.
I'm gonna help him shower now, his nurse is getting him unplugged and wrapped.
He a tad bit grumpy to her, so I just type and keep my head down. I can only imagine how shitty he feels. I bet he'll feel better after his shower.

Everything is better after a shower.
Enjoy your Sunday night...2 weeks here tomorrow. And one step closer to the finish line...just not at the race track...
Counts--
WBC 0.1
HgB  8.6
Platelets 8
Cr 0.64

Keep on praying, and praise the nurses, lab workers, and doctors on staff!

This warrior mama lisa

Day 3

This morning I let my body lay still. For just a little more longer than ever. Especially during these days. And who am I to complain of aches. And fatigue, when my son is fighting every second of every day. He's fighting a broken spirit. Last night before I left and began packing the exchange blankies beanies, and his favorite socks, he started talking a bit more. He's on his phone when he's not sleeping or doped from morphine. At one point I watched him squint like I do trying to read the screen of his phone. Mine from old eye sight, his from meds. He's beyond puffy. I applied a cortisone to his face, ears and back. All of which itch beyond what we can understand. His ears puffy from the fever he was running. Asking me "mama be super soft it hurts so bad". His pimples hurt. His legs itch. His private parts hurt. I applied two different types. Both he said helped. His frail body sitting up as I continued on because I felt like human touch is therapeutic too. Just waiting for him to say...enough. He was burning up. The nurses, and lab came in. When they become Neutrapenic (fever while no counts) they must take a certain type of lab. They look like teeny tiny liquor bottles you buy for flights, or concerts..or if you're like Bill and I we sneak them into concerts because we're tight asses.
They also take from his other arm just in case fever is coming from infected port side. They cover all the bases. Meanwhile, it's when I take a seat. Or begin to clean and organize his room. I have a hard time seeing his blood.
He then had me go check with the nurse to see if HE could apply the creams to his nuttys.
He. Is. Miserable.
Soon, he does what he does and asks me if the room seems hot. And my reply as always.."yes, totally honey"-- it's not. But his fever is trying to break, and the same goes when he tells me it's too cold, and I agree again. One thing about Kris, he views your face for assuring measure.
I never want him to panic when I know his body is just doing what it knows to do. Fight.
His platelets are dropping fast now. I've been worried more about those fellers most. No platelets mean if he bleeds, inside or out. No stopping it. And that's scary.
Transfusions will begin this weekend and week. More fevers will creep into the picture.
More pain in his mouth that looks like hamburger meat. Lips that are blackened like fried from the worse sunburn.
Radiation is a motherfucker. But it's the only hope to kill any old Kris marrow, allowing new young German dude stems to grow, and hopefully produce new blood.
This will START to take place in about 12-14 more days.

When I left last night he looked sad. I know he wanted me to stay, but from what I thought Jen was on her way. I was exhausted. He looked like he could sleep, but really just likes us there. Jen more so but mama coming in close.
I checked in with the nurse who was buttoning up her shift at 7. Let her know he's alone. Fever seemed to be breaking. My stack of blankies, beanies and a bag of poopy unders...a sincere thank you to Stacy whom I think is the best kick ass nurse he's EVER had. She will get lots of praise and gracious thanks and recognition from our family when we button up this stay at City Of Hope.
An amazing place you guys.  They are on it there. Their speciality to bring someone so close to death, and delicately bring them back up.

Right now, we are in the eye of the storm. I'm restless and nervous mostly. My heart sinks at the first view of him when I get there. It's hard. To watch your son so strong become so weak and so sick.
Hard.

Bill and I are heading back right now. I'm recharged. I'm full of clean everything he needs and likes. Pillow cases are the thing right now. And the smell of clean beanies, only if no fever. He's beet red.
And itchy.

We got this. I got this.

From your love. All our friendships and fellow parent warriors behind us. Behind my boy.

We got this.

Day 3. Cover my baby with comfort and love. Cover him with peace, and the memories of the great
Ocean to which someday he can get back out on...

Love and peace to you all,

This mama warrior Lisa

Ps. Kris, you make mama proud. Your side smile and dimple yesterday when I started to cry because I am so sorry you are going through this, heals my heart.
Til my last breath Bubby.

Day 2

Well....it's getting hard.
He looks terrible. And not only does he look horrible. He feels tons worse than words can type. A morphine drip has started. His mouth and body is doing what it knows to do. Shut down and heal. It's hard to fathom just how sick a person can become during this process. It's hard to believe it. Yesterday was a hard one. One that I can admit, I finally caved. I left here early because I emotionally was drained. His counts are wiped clean. His demeanor is mean and un-spirited. He wants me, but he doesn't. He needs someone here, and yet he at times probably doesn't want it. Or maybe just me.
I cried as I left his room and couldn't help but cry all the way down every fucking hallway and all the way down in the elevator. And I didn't care to make eye contact with anyone. I'm tired. I'm tired of seeing my son hooked up. Fighting to live through this. I'm tired of asking questions and probing for positive answers. I'm tired. He asked me why I didn't explain to him about another med they added, in which I did. He doesn't remember, and yet his anger is directed at the person in this world that you love, and she loves the most. Mom. I'm not backing down, I just backed up. For a moment in time. A breather if you will.

This morning Kali left at 5:30am back to CSUSM. She has sorority stuff all weekend. I woke at 5, made her the yogurt bowl she loved, packed any and every grocery I could to get her by this weekend, as I know her cupboards are bare at home.  We hugged tight, and I prayed as I watched her little car scoot off into the cold Friday morning distance. Always waving one more time before losing sight.

I went to work. Brought Bucksie with me to get that little dude out of the house. I cleared my desk, jammed through work half ass because my heart wants to be here. Our friend Scotty came to sit with him this morning. A good friend that sees him through good and bad.
When I arrived today he's now full of 7 different bags filtering into him. A morphine drip next to his head. Something he fought hard to avoid because he didn't want the side effects and withdraw later.
At this point his face is swollen. There's a suction tube lying next to him. He's laying under his favorite blankies. He's fighting. My first sight of him today made my stomach flip.
This is hard.

Today, I ask that you pray. Pray hard. Pray that his new stems are finding their place in his body.
If you don't pray, please take a moment to send positive vibes. To send him peace in a new body that needs to climb the rest of Mt. Transplant.

Have a great weekend. Be thankful for good health. Forgive those that you can forgive. Let little things go. Families are forever, and sickness sure brings it all together.

Much love, from a worried tired mama..
This Warrior Mama Lisa

Counts-
WBC 0.1
Hgb 10.2
Platelets 41
Cr. 0.58

Ps. Kris someday when you can read this. Just know, I am proud of you. I am so so proud of you.
Pull through dude...for mama and for all of us...

Day 1.

Good morning world....
And good new life to my son.
Last night the stems arrived around 6:30pm up to his room in an iced chest. Once I get to a normal computer I can upload the pictures. The day was a weak, sleepy and anxious one. A day that we waited for, and yet it comes just like the rest. The hurry up and wait. My worries that I kept tucked deep in soul was just getting them here. The donor. Them in a jet covering the transatlantic ocean. The driver from the airport to The City Of Hope. The counts. The nurses tired hands that were buttoning up their shift at almost 7pm.
I opened his blinds that face the nurses station just a tad bit (he likes his room dark) and watched a nurse come and set them down. He was feeling very irritated already at this point. Something I've noticed during the last few days. From feeling like shit, to being cooped up in your room. Answering questions from loved ones, or hearing the family that loves you so much carry on with excitement. All of it. He was on over load. Like a circuit that was gonna pop. My auntie Lynda came and brought our small family base camp some homemade soup. She sat up her little station of food and love just down the hall in an atrium on this beautiful 6th floor. A view of the mountains, and the highlighted city of Monrovia and down to the west, Pasadena. She made a soup to fill our tummies and soul, along with rosemary bread and brownies. We nibbled and anxiously awaited the moment those stems would infilter into my boy.

Reggie our nurse hooked it all up. That light pink bag of stems, hung there flowing with gravity.
Tears fell into my face mask. I did everything I could to keep those to myself, because the happiness and fucked up trail to get him here was finally happening. His facial hair has begun to grow back. Soon, it will be gone. The infusion took about 3 hours. I packed my goods to head home. Jen pulled her bed out. I figured those moments would be shared together. That although our family is the root in this life.  It's them to make the branches. And memories.

I drove home to climb into a hot shower and thank God. I let the hot water run down my face. Down my back.  I soaked up the day that finally arrived. I got out and got cuddles from my grand-Doggo. Bucksie who smells the bag of clothes I bring home. The kisses I get from him I believe is giving me thank you's for taking care of his daddy.

Today marks Day 1. Day 1/100. These being the vital days. This morning he called me early to say his legs are throbbing. Do you know what this means? This means that the stems are making their way to where they know to go. His entire body will hurt for MONTHS. We pray that they
Graft and hold. That his body doesn't reject.  His tummy hurts. His mouth has sores that would blow you away. He barks at me and has no patience. He can't leave his room. He must deal with all the therapists. The nurses taking vitals every 30 min, ensuring he is okay. His mom trying to encourage or add or replace blankets.
The look on his face today while looking through his phone and chit chatting with people screams "this sucks"

But he knows. He knows why and who and where. And the gift to be where he is. It's just a shitty path for this to be over. This morning I asked his team of docs if they can give him something for the anxiety. And something for sleep. Both of which they obliged.
They get it.
They see his body. They know his life style. Tomorrow is a new day. Good or bad. Kalis coming later today to relieve me. I'm a tad bit exhausted. More emotionally than physical. Mamas usually get the short end of the stick when one isn't feeling well. We are also the ones trying to make things better.
And so...I will ramp up my energy. My spirit. My faith.

To my friends, and to my family...THANK YOU! To his friends, especially his long time friends...thank you! Your love helps. He's trying to edit pictures. But mostly glued to his phone.

Me? I'm peeking through closed blinds down into the city of Duarte.

But guess what? They have amazing coffee here....

And doctors and nurses.

German dude, how I can't wait to greet, thank....and hopefully hug you one day!
Pop Stahl is smiling down from Heaven....

Danke!

This mama warrior lisa

T-0

You know, from the day we received that phone call that a donor was found I was elated, shocked and scared.  Fear took over mostly and I tried to keep that buried.  The night he was admitted I was a wreck. All of the rumors and discussion of radiation and chemo, side effect of it all wrangled me into a ball. And yet, as a mama you just get up, get dressed and get going. You arrive to his room receiving that dimpled smile and the common complaints of nausea and pain. Each day that he would become the old Kris acting silly, messing with the nurses, and on and on. And then you'd watch the change. His pale skin freckled with hair that is growing in. A mustache and beard so dark it's hard to believe its gonna leave.
Last night Kali and I drove home, hugging the carpool lane with exhaustion from really doing nothing, but a tad but stoked to actually see the sun setting. An old Led Zeppelin song came on that took me back to my dad rocking out playing air guitar. We laughed and laughed. Bill showed up to take us to dinner. I sipped the famous SuperMex margarita sitting next to my other favorite peeps.

This morning I woke to find my friends Maria and Shelly dropped a basket of LOVE on my porch.
Instantly I began to cry. I haven't stopped. When I arrived here today his counts are gone. He said "mama this is so hard like a flu feeling". All I could say is "Bub I am so sorry, but mamas gonna do everything I can to help them help you" first stop nurses station where I dropped them some goodies on behalf of my son, and us. And chatted with both docs. Korrie my favorite PA told me these next ten days are the hard ones. The ones that are critical. Fevers will come and go, as his body works to accept these stem cells. She hugged me tight and wiped my tears. She said having support and his family will help push through. They also gave me the count of stems from the donor that are absolutely amazing.  Once I get the numbers I'll post.

Our nurse Reggie says he's hoping to be here to give this new birthday gift to Kris.
I just helped him shower again, and the silly spirit is gone. He sat in the shower chair as I handed him the moisturizer soaps and oils to help his skin.  He stays on his phone during the day to help break the cycle of fear and all of it. I asked for them to give him something to sleep at night. Although they're in here frequently, he's wiped out.

As I'm typing this he's finally falling asleep.
His transplant should be around 7-8pm tonight, realistically. Once they process, count, verify and input. The stems filter into his body by gravity to ensure that the machines don't alter anything. And because the counts from donor are super good and high, it could be thick which can take anywhere from an hour, to four.

This is it! Pray on my fellow warriors-
Counts today-
WBC  0.1
Hgb. 10.2
Platelets 85
Cr.  0.19

January 13, 2016-

Love and peace,

This Warrior Mama Lisa

T-1

Well kids, he's made it to this magic day before tomorrow where he enters day 0. Day zero that will give him a second chance to live a normal, cancer free life.
Transplant tomorrow!
Counts-
WBC-0.4 (isolation has begun) can't leave his room.
HGB 10.4
Platelet - 111 (which surprises me...remember upon diagnosis he admitted at 18)
Cr- 0.68


The thing about BMT is there's risks and the hill to climb to get here has been absolutely tough! And yet he continues to be gracious. He's kind and he's polite. I've watched him puke, and dry heave and still answer the "not the best timing of social workers and therapists" questions. Inside I want to shout get the fuck out, but I just hold the big pink bucket and remind him to breath. All along my side eye is winning.

Today he's begun the final pills to not reject his transplant. They're little light brown triangle pills. I pray those little gems help heal my baby.
As I type this he contines to be uncomfortable. Adjusting his bed and blankets. He takes his beanie off and on. I reminded him of how proud I am. He's come so far! He's made it to the best place. He has a warrior of friends behind him. Friends that are sisters to me, pray daily. Wake daily thinking of him. They pray at night for him. They send encouraging notes.

It's because of you. As he stated in a post to my friend Kyoko whom is like an auntie to him. "Much love extended family".

My sweet neighbor Erica who drops off breakfast and dinner for me because she knows me and my path. Maria, and Shell I love you girls. Let's look out at the harbor waters soon and sip wine.
To Bill who continues to hug me and wipe tears. And let's me bark and bite and just stares at me.

My sister, I wouldn't get through this without you.
Jen, the love of his life that drives 100 miles round trip and sleeps in a recliner next to his sick body.
You, my girl. You are the reason he is able to push through.
My big family....thank you.
My aunt and uncle way up north that continue to send love. Peace and love.
For you all, I will FOREVER be grateful.

Leeettttttssss get ready to rumble!

Come on baby, climb these next few hills..

I love you Merkamer. I will fight with you until my last given breath.
Love,
This warrior mama lisa

T-2

Today, has been a good day.
When I arrived this morning his smile made the day begin just like any mama hovering over a nest would like. He puked a few times as I was getting my little report from the nurses. If there's one thing I've learned in treatment, is get to know your nurses, and appreciate them. Help them help you. Unless they get he and she mixed up. Then, they're out. Jk. (Did you know there's always a little honesty in every jk).LOL

We've had to wear these yellow surgery looking gowns because he's had el diarrheal symptoms.
So.....we wear these, masks and gloves. The trick to the gloves is to ALWAYS grab small. (You can function much better). I tend to float around his room still. I often wonder if my nervousness tendency will subside. Both docs made their way in today. One I love, her name is Korrie. She always listens to HIS needs. The other is a bit essentric and sometimes dramatic. Both care a great deal, but you know...bedside manner baby...bedside manner.
Korrie always fist bumps him, and gets him.
After they left we showered. When I say we, it's a little group effort to hand over various washes and oils. Both were given to him by my friend Beth. Neutragena oils, post radiation is just perfect.
After his shower and he was still unhooked he wanted to go for a walk. One loop through his path and out to that same atrium. Where he was awe of the snow covered mountains.

Soon he began to show me pictures of food. I cracked up because this is the pattern we followed in rounds two and three of chemo. I'd start the process of what foods we can have, and those we can't. Like his desire of weiner schnitzel. (Does sound good though, you all know I can woof down a corn dog drenched in mustard before I pull out of the drive thru..so ya)
Nope. No weiner schnitzel Kris.

Kali made her way here as she does, to sit with me. To sit with him.  To be with us.
She also had dinner ready for me last night.
I tell you kids, it's the little things. His counts are low and getting lower.
Our birthday boy is getting ready. As they say...one day at a time. But today....? Today is a good day.
Counts:
WBC 1.3
HGB 11.2
Platelets 136
Cr 0.70

January 11, 2015---

Gotta keep my chin up, God gives his biggest battles to his strongest soldiers...

Big love,
This Mama Lisa
Ps. Finally found a social worker that seems normal. Holla Terrance!

T-3

Happy Sunday lovers!

My morning kicked off with an extra hour of sleep and the desire to roll over and sleep in a little more. The only problem with that is I had laundry to do and a house to tidy up. Kali's home, but I just have this way about doing my thing. I've been rolling in and out and it's catching my tail. With the love of my neighbor and friend I've eaten the best soup for two days. My girlfriend Evie dropped off soup as well. I eat this stuff for breakfast and dinner. I'm telling you, the love of soup to warm my belly making me a rested mama. The last time he was in the hospital I lost weight, and gained extra grey hairs. Jk on the hair.
He had a rough night last night. Going thru unders like a boss. Bill said "Hun, maybe we should ask for those diaper like things for a little while" my response -- no.

The chemo given was a kick ass dose. The radiation was a lethal dose to kill the morrow. This chemo, being the same. They want to kill what's left. The infusion taking place today is something called tacrolimus. There are three large bags that will infilter for the next few days. This kills the rest of his immune system. Something that must be done to close down the old, to welcome the new!
It's making him a tad bit sleepy. He walked the halls today and sat in my favorite atrium area. A spectacular view. Bright lights and sunshine are hard on his eyes, but he did it...
He's most happy when Jens here, and probably most alert in the morning.
Today,  tomorrow and Tuesday will be the immune suppressing drugs.  This afternoon he's starting to have sweats and hot flashes.

Something I've learned from day one. Each day is a new one. Each day is chance to get this behind him. Some days feel like a train wreck and other days feel like a rainbow is shining down.
The hardest part is the nausea and pain for him, the fatigue is real, and the side effects are brutal.
One day closer to the finish line. One day closer to the start of a new life.
Enjoy your Sunday with these clouds and cool breezes. Love hard. And be thankful for the little things. Like nice people. Good doctors and amazing nurses.

Happy Sunday and get after your work week!

This warrior mama lisa

T-4

Hey friends! First of all I'd like to wish my best friend and lover a Happy Birthday!

Pretty wild way to celebrate with our son as we watched one of the hardest "dynamite" chemo's infilter into his body. This after enduring 11 rounds of radiation. He's kept his chin up as much as he can considering his nausea is extreme. He hasn't eaten anything since Tuesday. And that was a bite of soup. To which he puked.
Our nurse "Reggie" is cool. Cool in a way as a dude you can understand things. Nausea. Communication. Things.
When I arrived this morning my auntie Nettie was sitting at the end of his bed. The same aunt that held him up during his first hardest chemo ever. She smiled at me with the same acknowledgment of motherhood. Knowing what we do for our kids.
The infusion was 4 hrs long. An infusion that will most likely make him curl up for the next ten plus days. This will wipe the rest of his counts out.
Before the end of the process he will lose the rest of his hair, and all finger and toe nails.

As I stared at him earlier I can understand, but not really want to accept just what is about to happen.
And so I pray. I walk the halls when I become frazzled, and I pray.
He's taken some sips of sprite. He's on his instagram. And he's on his computer.
My other auntie Lynda also showed up. Bringing him a pet snake and a little angel. My sister and
Kali were also here. It sure made the spirit in her lighten as we know his days of isolation are near. We know that he will need love, but can't get interaction much.

My corner view is the majestically set mountains. I try to imagine life out there. Someone hiking. Someone enduring good moments and maybe even hard moments. Life out there for people healthy  and maybe some who have won the fight.

I hope your night is filled with positive thoughts for my boy. For prayers. For smiles, and most of all HOPE.

Love and peace and lots of faith,

This warrior Mama Lisa

T-5

Hey friends...and familia...

Hope this beautiful Friday gives you all a break in the rain and the feeling of exhaling after a long week. We've had quite the wild week, and yet have so far to go.
Today he will complete his 11 rounds of intense radiation. In about 30 minutes we will make that final trek down and around these hallways to radiology. A place that takes us down 5 different long corridors and 3 elevator trips. All the while with a dude that can barely hold his head up. We have a pillow for support and those comfy blankets around his body.
We run into the same two other kids in there for treatment.

He can't even sip water or ginger ale at this point, and his mouth is full of yucky frothy sores. They do come in for mouth and respitory treatments to help things keep flowing. One of the issues is their throat losing its strength to swallow.
I just helped him shower. Got him in his coziest Jammie's, good favorite socks of his and tucked him away. My latest battle has been warding off silly occupational therapists, house keeping, etc that open the door when he's sound asleep. I'm trying to up the game in my poker face stance. More like trying you wipe the bitch face look off. Smiling thru thorns poking out of my head. LOL. Mama's and Papa's out there who've rode in my similar bus, do you hear me?

I hope you all have a sweet weekend filled with love. I got home last night. Did a load of his laundry. Swept my kitchen floor, cleaned a little which helps my anxious body, took a long hot shower and ate the best bowl of soup!

I sat with Kali discussing life. Her always encouraging me, where in fact the tables are usually turned.

Bills working a trade show making this a tad bit harder all around. But one thing in life I've always known....there is really nothing tossed my way concerning our babies THAT I CANT HANDLE-
Faith is pulling me through and it will pull Kris through too.

Til my last breath, til my last beat in my heart.

I sent this quote to Jen last night--
-------------------------------

The women whom I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong, and they handled it. They handled it in a thousand different ways on a thousand different days, but they handled it. Those women are my super heroes.  --Elizabeth Gilbert.

--------------------------------

Mama warrior I will be.

This Mama Lisa

T-6

Hello from beautiful Duarte, Ca. A city that holds the best hospital for people fighting the fight in cancer. A place that holds face masks and gloves on every corner and a place where bald heads and wheelchairs are more populated than any other.
We just got back into his room after his 8th round of radiation. These rounds for HIM have included breaks to puke, and looks at me that say mom I don't think I can stand through this one. And yet he does. He smiles as he has to, and lays his head to the little side pillow mama makes to and from.  We run into the same two other patients that are in the same fight. Same plan. Same weakness. Same bald heads. Same parents staring at eachother with HOPE.

He has oboe had two bites of soup since tunes a and has no desire for more. I've ordered smoothies and juices. I've popped small cans of ginger ale with hopes that will help. It doesn't.
His body is red. His mouth becoming puffy and frothy from these treatments. They hit them hard and they hit them aggressively to knock out HIS marrow and stems system to try and welcome the new.
We will head back down one more time today. And two more times tmrw. He will receive the dynamite chemo on Saturday and within two days drop down the lowest a body can drop.
Next Wednesday his new life and new stems will make their way in.
I pray for our donor today. I pray for the transportation to fly it here.

I sit in the corner of this safe, warm but scary room and stare at his body. The body I birthed. I smile at him when he wakes. I remind him of how far he's come and the finish line. He said to me today while down in radiation, four words that melt me. I love you Mom.

I told him he's the reason I wake. He's the reason I've already made my path around here. He's the reason I have become a warrior.  To and from every single treatment. I stand by his side.

To all of my friends who've reached out to me, thank you. For my family especially my sister that grabbed the bull by the fucking balls and stands up where we've never had the maternal support. To his amazing girlfriend that pulls a recliner CHAIR out every single night and sleeps next to him. Fulfilling a part of life in love that a mom can't. That love moral support you get from your partner.
To my cousin Monica that sent him a goodie box a month ago filled with cozy flannels and socks. Socks that I helped him put on yesterday after a shower and couldn't help but crack up because when he was little socks were a big deal if the "line" didn't go up and over his toes. And these socks did. And so we laughed. He loves them. To neighbor friends Erica that dropped soup this morning and a spiritual book that enlightens me when I am weak and a crybaby.
To Kali that sits here when she can and now only covers her ears as he pukes instead of run.
To all of you who are praying. (Whoa spell check changed that to party the first time around...ya that too) but wait until he's gone over the 100 day mark.

3 more intense days of treatment. Lots more days change. And count drops. And lowest of low days.

But we are here kids. In the place where my heart and family holds all of its hope.

Big love to you,
This warrior mama lisa

Life With Hope

Hey Peace Loves-

Back to blog updates from my ipad. His admission yesterday was long and of course included lots of different offices, lots of waiting and lots of frazzled nerves. Finally after getting into his room at 7:30pm he and Jen do what they do. Cuddles and pictures, but most of all adding pages to these chapters. If there's one thing I've learned through this process is her strength. At times when I can't seem to stop crying, or Kris begins to panic she just puts things into perspective for us both.

Last night Bill and I tossed and tuned as we expected would happen. That groggy feeling of getting dressed, sipping coffee and pulling back into a place that I hold so much Faith in. As I was told from day one, and any persons involved here, it is the best.

We arrived at 7am after trying to get him to eat. He wasn't hungry and filled with anxiety. They came to get him at 8 for his first radiation. He was gone for about an hour, returning with a full spirit. A physical therapist came in to begin the process of how they will conduct their daily therapy. Within about an hour he looked at me and said "mom I'm starting to feel it"- and so he puked up his Gatorade and the little banana I was able to get him to eat.
Within another hour they retuned to get him for second radiation. By this time his happy spirit turned to a frown, and off they went. He puked in there but was helped by the amazingly sweet tech "Deana"- she had to un strap him, bring him down, let him puke and re-start the process. Offering him a watermelon jolly rancher in which he said helped.

He's back in his room as Bill and I sit bed side. They just gave him Ativan, and a dose of Benadryl is coming next. Both of which will help him relax and sleep until his 4pm round of radiation. He has 9 more to go.

As much as you prepare things for this process you will never be prepared to see how sick they become. How a spirited happy dude can be curled in a ball.

Looking at the cup we all want filled, it's a positive move forward. We do know our donor is an 18 yr old male in Europe. Our grateful hearts are beating with thanks for him. For what he's endured to offer his stems to our boy. We pray for safe travels for the transporter. For the plane. For the miraculous process of science.

Today T-8 is a rainy weepy one for me. But with the strength of our team. Jen, Bill Kali, my sister and Tori. My aunts that are my surrogate moms.

We will get to the finish line.

Pray you guys!

Love, lots and lots of love...

This warrior mama lisa