Places You Go, People You See.

Hey there lovers....

Happy Thursday!

Our City Of Hope field trip was all that we really expected to be. 

Arriving to find the furthest parking spot.  Something I've done is always tell the kids to pull their "Faith Parking Hat" on.  Which in Bill and my terms mean, we do this when we feel doomed for parking...and usually 8/10 of the times, we find good parking.  And so....

We pulled our parking faith hats on.  

But...

It didn't work.  LOL

 But no worries, the kids would soon flag down the shuttle.  

Arriving at labs first...then docs next.

I screwed up and had our times mixed up.  His appt.  11:30, I thought it was 10:30am-

At least the wait was worth this.....

HE GAINED SOME MORE!

132!

His WBC is 4.0

But platelets seem to be gobbled up again.  50.

 

 Something I am trying very hard to learn is to not panic.  To not get myself so worked up. 

A few hours later his doc would call me.  It's kind of awesome with Dr. Farol, because....he's on it. 

I see the number. I answer with a smile, knowing it's him.  Directing him personally...he chuckles back.

His Sirulimus levels are still too high.  On Monday we went from 3, down to 2.  Now tonight he'll take none, and back to just 1 starting tmrw.  Something about the anti-rejection meds is you have to watch what they do to other things. It's one big juggling act. 

But hey, I will juggle every day, all day....I just want him better!

His stomach hurts still....so soon we'd be back down the road to Baldwin Park to pick up his new syrup medicine. 

I pull to the front.  Jumping out with both K's in the car.  Both irritable.  One from pain.  The other from hunger and lack of sleep.

As I was running back out of the pharmacy I see a glimpse of a girl.  It was my cousin Evelyn- So funny!

To tap on her shoulder...."Hey girl"-

"Heyyyy Lee"- 

Oh, hey no bigs, just here grabbing medicine for my boy....

2 big hugs and I was off....and running!

 Texting this dude the doctor stats (My Dad) and my mom.  To get a response from my Mom. 

"Dad's mowning"-  

And "Spring has Sprung"

Another full day. Another chance to see science. Health.  New chances and moments spent with my kiddo's. 

I arrived at work at 3:30.  Easily wanting to stay home.  I am truly exhausted.  But with a day like today...I will keep pushin'. 

Sometimes it's places you go, and people you see that give you reason to keep pushing...

Hope everyone has a great Thursday night!  Friday is almost here!

Happy Birthday to my cousin Stacy!  I hope you're enjoying this Southern Cali weather....

May PEACE be with you and yours....

I'm gonna plan on what to feed my McChubbers for dinner....

Love,

This Mama Lisa

On Gratitude

I've been thinking about the word gratitude today.  Actually I pondered hard about it last night. 

While driving home from Kali's doctors appointment to check out that little cyst in her lip, I couldn't help but cross paths with my gratitude thoughts.  

So much gratitude for things. 

For people.

For family.

As I sat next to Kali at that appointment I read another message from my buddy in London (Hi Sumaira!)-

She shared another day in the life of transplant.  And our topics covering Leukemia.  It's amazing what we share. It's amazing what path we've walked, and still must walk. For our kids.

And I thought wow...

 Gratitude.  

She's reaching a part of my soul that really no one can.  Bill can't.  Friends can't. Daughter can't. 

It's something only a mother would understand.  The grief.  The panic. 

Something she shared with me, was our suffering of some sort of "post traumatic" stress thing.

The gratitude began to sink in a little more.  So much so as I was reading aloud to Kali, I started to choke up.  She smiled.  I tried to continue on, but couldn't.  

Here's this Mom across the world from me, feeling my feels.  

Gratitude.

For the strength I carry to move the world around my son so he doesn't have to.

Gaining my strength for him. Hooking him up to his iv at night.  Just opening the needle pack I get such discomfort in what I'm doing. And yet, I just do. 

You would too. 

It's like this super power has come over me.

I truly am exhausted.  But I'm grateful for the strength within me to do what I must do.

I can't rely on others. I've learned that. Although people reach out to help, they really can't. So they carry on in their lives. 

He's my son. 

I will do what I need to. 

Gratitude.

For the food I can buy for him. Although I struggle to work.  Struggle to juggle bills and paperwork. I just do. Thank God, I can buy food.  Good food.  To allow him to thrive. 

Something he said this morning while Bill, he and I sat in the quiet early morning living room. 

"Mom, I don't know what people would do without a caretaker"-

Truth.

It's pretty obvious that while healing through something of this magnitude, you need support. 

Moral. Physical. Clerical. 

Gratitude. 

Those that care enough to call me back. Pharmacies.  Sperm bank today that had to get a credit card to update his account to assure another year.  Another year to safely save his little swimmers for fatherhood someday.  

I gently nudge him more and more each day for simple tasks. Like, shaving.

Or showering without us standing in there..-------------------> hello weakling could hardly stand at one point, much less shower holding onto a glass door---

I nudge him to water our flowers.  Or a lime tree that Bill and I killed at the beach, and so we're trying to give it a second chance in life.  I haven't yet asked Kris to do a lime dance around it, but I'm close.

We just want some damn limes.  Farters won't live. Leaves grow, we jump with excitement, then they die. 

Gratitude. 

Friends that wait a day or more for a return call. I wish I called back sooner. The truth is, when I want to call people back it's usually while driving.  However, right now my re-dial is set on pretty much one person. 

My Dad.  Or my sister. 

I try to update le' blog so the world can see and feel what the chapter pages look like.

Some days I feel like a complete loser for not sending thank you cards out to friends that have given me wine.  Or books.  Or games. Kyokooooooo--- Or hugs. Or love. Or wiped my tears. 

The old Lisa would have sent a thank you card within days.  

I can't right now.

Gratitude. 

For my mad cooking skills.  I'm like on fire.  jk.

I went from an empty nest cry baby mode because my girl was gone to college, to preparing three square meals a day. On top of making sure every darn germ is wiped clean.  No food close to "expiry date" can stand a chance in my kitchen.  Just that alone keeps me on my toes.  I've been known to grow some greeny slimy shiz in my veggie drawers. 

Not now. I can whip up a smoothie in ten seconds flat. -Oh, you want peanut butter, no prob- glop here, plop there. 

Gratitude.

For Kali.  There's been moments in the last two weeks where she's watched me almost lose my shit.

And yet, she keeps offering help. Love. Smiles. 

Just like last night coming home from a very long day.  The doctors office topping the charts for me, after hearing she has to get that thing surgically removed, and biopsied.  (which I know God has my back on this one, she's fine...just a gig from biting her lip..a lovely trait she gets from her mama)- But my fatigue and last stop at Ralph's arriving home at almost 7 completely tired.  I walk over cords and a laptop with a show Bill and Kris are watching.  The house feeling rather...."sloppy"- 

I began to shuffle everyone's things around.  My quiet demeanor. To soon hear Kali say..."Mom, stop"-

I really wanted to sit on the ground and cry. 

But I still had an iv to get "primed"-

I still had dinner to get in and figured out. 

I still had a load of laundry that I forgot I tossed in the morning, causing those flippin' towels to stink like...whatever.

Gratitude.

For Bill.  Whom yet, still stares at me every.single.day. when I can't talk because I start to cry.

Every freaking day you guys.  I still cry.

He just assures me.  Hugs me.  Changes the subject.

Gratitude.

For all of you friends.  For your love.  For your prayers. 

For the chance to let me get this out to you. 

I don't sleep well right now.  I'm up and down to beeps, and a son that yearns to hear me come down the hall when that thing is beeping.  In the morning when I disconnect and flush him. 

I'm on robot mode. 

But I am grateful.  He's alive-

I am alive.  

We will continue on the path we only know.  Same with my friend across the huge salty pond in London.

We do what we are put on this beautiful Earth to do. 

Motherhood.

Gratitude. 

For Motherhood.

Happy Hump Day Humpers.  

Big love,

This Mama Lisa 

And 3 More L-B's!

There's a little succulent plant that sits on my desk top.  It was a relative to one I pulled apart on my porch, making Christmas gifts in December.  Cutting little sprigs off, making little cut-lets, if you will...for family and friends.  Little gifts that made me so proud.  Gifts that offered homemade, instead of the traditional gifts that I tend to walk in circles during my hardest month and holiday to make another person happy. "Trying to find perfection"-  And so, this year I did my best to make these ever so popular succulent gifts.  Simple. Beauty. 

There's that one.  Sitting on the desk.  And yesterday morning as I sprinkled a little bit of water....I noticed a new tiny blossom.  Of life.  Of a new bloom.  

google image-

I couldn't help but stop and stare for a few seconds.  Kind of smiling inside and reflecting of what our new life feels like.  This blossom and my son.  Each day, offering a shimmer of growth.  Of hope. Of goodness of where he is.  It's not an easy road.  But this tiny little plant...reminded me of him. 

Of this chapter.  In our story.  Most importantly, his story. 

We had Lab and Doc day yesterday.  Day 75.  For some reason I was ahead of myself proclaiming day 76.

That's neither here nor there. Because, really.....It's gonna be 1,775 days and I will most certainly count my blessings that he's still around.  

He woke with a gnarly tummy ache.  Dry heaves, a tad bit buckled over....on the scale....1-10...it was a 6.

The plan was Kali was gonna do the doctor day.  My gut said, no.  I would go along.  Something I've noticed in this journey....I can't settle if things aren't settled.  And so....if mama can help, you best know she will at least try.  He also had a rash on the inside of his legs... In other words I'm at basket case at work....trying to talk fiberglass, and invoices + Son at COH = Mama Mess

I'd feed him a steak and egg burrito with cheese, and sour cream in the morning.  I kind of chuckle at what I load inside.  

Anything calorie filled.  Toss it in. 

(Back up to Easter Sunday...I had this weird hunch to make steak.  Steak and potatoes. I remember a nurse telling me at COH that during her transplant, her counts wouldn't rise fast and someone brought her steak.  Bam.  Done deal....and so....Steak + Easter = Goodness)

We'd arrive with little sprinkling rainy skies.  Those days are Kali's favorites.  As we pulled up to drop, she'd offer to walk in with him. He smiles.  As they get out together and make their way in, I just watched.  From a distance before pulling away.  My two K's.  Her walking in with him in a chapter we'd never know about a year ago.  In fact, I just went into my March 2015 folders and what a switch in life.  In one post, Bill and I were walking the beach with Kali.  In another I spoke of what a nice dinner I had with Kris.  In one, there's a post of Bill and I cruising the harbor at cocktail hour.  To think my stresses were worrying about Kali away at school.  And of course....work.  Business.

How things change. 

We'd get to labs. Get to doc.  Find out he GAINED 3 POUNDS!  The first thing I'd say when we get in the room...how much does he weigh?! 129!  Along with his WBC 3.6- His doctor quickly asking "did you get neuprogen"-  Which is a boost for white counts.  NO SIR! Deep down I thought oh my... RED MEAT!  Steak!  HOLLA!!!!!!

Platelets are still a tad bit down.  Siralimus levels a little high, so I take one of those gray triangle pills out when we arrive home. Also a new test called LDH will be done Thursday to see why the white's are up, but the platelets aren't.  He also said sometimes the platelets clump together when being drawn. 

His tummy ache will hopefully ease on it's own.  Along with the tiny rash-he recommended Aveno Oatmeal lotion-He's down to 1/2 of a prednisone (Steroid) each day. 

It's all an ebb and flow. By eliminating that remaining balance of steroid, it kind of lets gvhd step into play. 

(Graft Versus Host Disease-you remember it's his new cells attacking the old Kris cells)

I also asked the doctor if he needs to stay on TPN (the IV at night for nutrition) and his words-"Yes, he has to regain what he lost"-

My face --------------------> enter that emoji where the face is looking down-  Only, I hide my reaction.  And share a smile.  ...................o.k.   :) 

Before leaving his doctor prescribed a syrup for his stomach that helps ease the pain.  It's only mixed in one town on the way home.  Baldwin Park.  It's mixed in two days.  Overnight.  With Corn Oil.  

Yum. 

I will pick it up on Thursday, or whomever takes him to doc day will grab that glory....and we'll see how that works.  

But, let's talk about last Friday.

Last Friday.  A day that we called Good Friday.  A day that I wanted to learn a little more of. 

The religious part of it. After all, I closed the shop half day for our employees.  It felt like such a beautiful day.

A day to worship it's meaning.  Our employees that follow Lent.   Appreciating closing those big bay doors at noon.  

We all did.

Kali was home, and asked if I'd join her, Madison and Shelly for lunch at 1.  

I'd love the idea, but asked to give me to 1:30pm so I could run my last shop errands, jamming home to feed my big bird.  

After jamming home, and learning that Jen would be there.  Kali and I jammed to 2nd Street for Open Sesame for the most amazing lunch.  

And white wine.  

Soon, Shell would say...."Leese, join us for a duffy cruise this afternoon.  It's from 4:30-6:30"

I'd run home, grab my bag.  Drop Kali off with her brother and soon be on a boat. With my buddies. Sipping wine. 

I mean.....What a way to end the week.  Good Friday.  Wine.  Friends.  Sunshine and sunsets. 

The cruise ended with my night'n'shinin' armour ---Bill---(Who's been working his ass off )on the dock waiting for me.  

LOL.  sounds cheesy that way...but twas' really cute.  He knew my ride ended at 6:30, and so he'd run his last errand with Kali, picking up her car from le' body shop, and jammed down to me. 

Swoon. 

We went on like two lovers.  Giving my hugs and goodbyes to these chicks that wrapped their love and goodness around my soul. Bill and I moved on to dinner at 320 on Main.  Seal Beach. I really needed to get away.  To sit and chat.  Laugh and sip a cocktail.  Pretending like nothing was chasing my tail. Or there'd be a tail to chase. 

You get my drift, right?

Sitting alone with Bill has always been a favorite thing to me.  Or my babes.  Those two things in life. 

Saturday morning I'd dash back home.  Cooking.  Laundry. Medicines. Watching him sleep.  I'd make him shower.  He'd complain that he was so tired.  I'd reply to rest. It was such a beautiful breezy sunny day.  Those days where you'd hear the neighbors lawn mower.  Birds next to his window, where I placed a bird feeder.  Simple peace in our house.  

Bill went to work.  And so of course I kept busy.  

Receiving a text from Carmen.  Trying to rally the 6 pack together for dinner. 

We'd agree. So Bill and I would ride our bikes to meet up. 

My Handsome

Easter morning rolled around.  We woke and I had this strange guilt come over me about Easter. 

No baskets for my kids. 

Something I've managed to do every single year.  Just simple goodies. Not much candy.  But just my little offering to them. 

But nothing. 

They both laughed.  

I kept trying to understand the meaning behind Easter.  He is Risen- But what does that mean? 

Asking the kids.  Asking anyone to explain to me. 

God has been so good to me. 

To Kris.

After running to Whole Foods for our Easter dinner, and spending 60 thousand dollars....jk.

I did get 4 New York Steaks that were out.of.control. 

And I don't do steak, often.  I am a 3 bites, and done type of girl.  But man....

Soon, we'd have my little unit around me.  Bill, Kris, Kali, Jen, Tina, Tori and Bucksie....Pure LOVE.

You know those simple days. No big holiday plans for us.

He can't do big crowds.

His words to me driving home, were glorious.

Mom, that was my favorite, I really love when we're all together.

I want you all to know something.  Something I've watched through this awful process.

Our family has been pulled tightly together, and closer than we've ever been before.

It's proof that I do believe things happen for a reason.

These last few months have been the hardest months in my entire life.

I've never known the strength I'd have to pull.

Or just how much I'd lean on my soulmate. 

My kids.

My family.

And most important, my friends.

I've been literally dizzy at times.  And sometimes I don't want to crawl out of bed.

But I do. 

Just like I always have.

There's a a plan in place.  I know that. 

My son is fighting hard and will fight hard for months and months to come.

We will get through this. 

Soon, I will move along to some other worry in life.  Or maybe, just maybe be able to help someone in need that is walking this walk.  

The most important thing here, is love.

I've never loved harder.

Kali recently reminded me, that I've said "Don't know how I did it" when referring to raising them.  I truly don't know how I did it.  But, like all of us, in everything we do.....we just do it. 

It could easily be argued that you love and do because you just have to, where in fact I truly believe that you are on this Earth to spread love and make a difference.  And that's something I've always wanted to do-

And right now..... I'm just doing it....

With an army of love behind me----

Because I'm Mama Bird!

Love to you all.....

Keep on going friends....life can be one big scary deal....but keep going. 

Pray.  I promise you.....just pray.

Peace-

This Mama Lisa

Brave Moments

Our Thursday morning started sitting next to my girl sipping coffee.  Talking about how brave I felt to unhook and "flush" her brothers port.  Something I've cringed over since August.  I can hardly stare at it.  When he grabs it, moves it or adjusts it, I literally get this little butterfly flutter in my tummy.

Trying to watch each week as they change it.  But....I cowardly step out of the room.  He smiles, I hunch my back over in pure shame. 

Wednesday night offered me no room to coward down.  I had to step up. Learn. And do what was needed on Thursday morning come time to.  And that I did.  He walks me through because he's a pro.  He knows all the loops.  How they push the fluid to the top.  How to push harder when it seems clogged.  Me, always asking "if it hurts"- His gentle response..."no mom"-

We'd soon see my sister at my door step.  Coming with us on our COH field trip.  Trying to make a nice day out of it.  Kali home for break. He was stronger, and I could see more color.  

I've been a cooking maniac.  He ate French Toast, scrambled eggs, and three slices of bacon.  Along with his orange juice and p.i.l.l.s.  

Telling me as I took his tray that he'd love more French Toast.  It's funny how when you switch things up, it's appreciated.  

I guess that's kinda like everything in life, right?

We'd make our way. Landing to City Of Hope, pulling up to the front, but not asking for a wheel chair.  He'd walk in with his sister, and me and MY sister would park. 

As we all sat in the waiting room, I kind of felt like he just seemed better.  A tad bit stronger.  

And maybe, just maybe a tad bit bigger (weight)-

They call his name and we'd all make our way down those familiar halls.  Left, right...and right. 

Sitting against the wall on these padded connected long seats. 

He leans against me, I lean against him.  He's already exhausted.  I can feel and see it.

He'd get called again, and be inside there for about 45 minutes.  Labs and port change and clean.

We would all make our way down to the basement to see our doctor.  Walking in to see a very long line.  A line that was held up by an elderly woman.  Asking way too many questions, and yet trying to figure her future appointments.  Because she needs a driver.  And so we stood there listening to dates all the way into September.  Soon I'd hear a receptionist that knows us.  She smiles at me, and says "I checked Kris in Mrs. Stahl"-  

Thank you sweet girl.....thank you.

His name called right away.  Vitals taken.  Me staring intently as he stepped onto the scale.  The only problem, I don't know how to read the percentage it shows. 

She'd tell us his doctor is waiting for us. 

Wait, what?!  His doctor waiting...?  For us?!!!  BAM!

He gained 2 more lbs!  His counts dropped a little.  WBC 2.5 and Platelets hovering in the high 73's.

Before you know it, our 3 hour tour was over, and he'd make the long walk to the car.  Something that seems so easy to some, but so huge to him.

I snapped this-

Although the temps are high, he's always freezing. 

Making our way back down the six.oh.five.....

He wanted his bed.  We wanted lunch. And I most always start to push the idea of food.

A fridge that was becoming more emptier by the hour, I'd need to run to grocery store.  And Kaiser. 

To pick up another 12 bottles.

Collapsing onto my bed at night is a whole new meaning.  I truly feel exhausted.

Mentally and physically.  Nothing takes the place of motherhood.  Nothing ever will. 

I remember meeting a lady in radiation.  Her 40 year old son was being treated for the monstrous return of cancer in his neck.  Treated in his late teens as he played baseball, and they noticed a lump while he was a catcher.  Thinking and praying they got it all....Married a few years ago, and a new father to a baby boy.  His mom taking motherhood by the horns------> a.g.a.i.n.  Staying at a hotel while he would undergo treatment, back and forth for 6 months.  Living in Temecula, staying in Duarte 4 days a week.  Driving home on Thursday afternoon for the weekend. To return on Monday morning.  Motherhood, to help her daughter in law be a mother to her new grandson. 

Doing what we all do.  In Motherhood. 

6 Months. And by the looks of things, or at least from what Kali and I observed....it didn't look very good.

Motherhood. 

Last night I was taught another round of hooking my boy up.  Only this time, she'd show me how to "prime" the IV.  Getting ready for infusion when he was ready for bed.  More for me, because ---hello 12 hours, I must be ready to unhook. Clean. Flush. 

And so we did. 

Last night the beeps beeped.  The morning light rolled around.  Walking past his room to get my java juice to talk. And walk. He'd be awake catching me slide by..."mom it's done"

I knew it was.  I knew, I just wanted to get the cob webs out of my eyes.  I am really tired. 

But.....I did it!  He had to correct me once.  Making sure I pushed the fluid all the way to the top before pushing into port-  woops.  

 Our family is made up of silly-ness.  But in the morning, we are serious.  At least today we were. 

When I finished, I winked at him.  Kinda like proud of myself for getting through something that is so darn scary. 

Something I have fretted from day one.  

When his doctor called me yesterday while I was out running errands, I had to just ask....

"Dr. Sahebi, since he's on the uphill of gaining, can he take a break from TPN over Easter Weekend"?

Oh, course he can.  Let's just start back up on Monday.

And so....Monday it is.  

We'll stuff him full of goodness all weekend. 

This morning he ate another 2 pieces of French Toast.  3 slices of bacon. 2 eggs. And a little fruit bowl.

With orange juice. A repeat of yesterday, but we knew he'd take it all down.

Back to sleep he goes as his body digests all the meds.

Kali went to the doctor to see what the heck is going with a little cyst in her mouth.  

Something we all just shrug off as nothing, but you know...the swirling thoughts make their way around my crazy mind. 

Everything will be fine.  

Because I am Mama Bird--

Thanks Regina and Brian!  Bucks says THANK YOU TOO!

 

It's a GOOD day to have a GOOD FRIDAY!  

May you all be covered in GRACE-   And of course, lots and lots of LOVE!

This Mama Warrior Lisa

Day Seventy

It looked like a normal day in the life of post transplant.  It was yesterday.  A normal Tuesday.

He complained of a stomach ache.  Bright and early.  Not really wanting to eat, but you know the look you get from your Mom that wreaks "please eat buddy"-  And so he ate.

About 15 bites of a bacon and egg sandwich, laced with avocado and cheese- A cup of juice to go along with the 19 pills he tosses back in between burps. 

He chews.  I watch.  He swallows with everything in him. I imagine when I was pregnant and didn't want to eat, but knew I had to. 

Before I even fired up the stove top I could see his pale face, and urgent need to puke.  Only thing is, there's nothing to puke.  So picture a cat hurling up a hair ball.  He dry heaves, I talk him through.  Towels come into play....and he settles down as he hears me say "breathe, bub....breathe...."  and so he does...and the rhythm slows to calm.

He also started in about the anxious feeling that over comes him at times.  I've read this is the total norm.

I guess you feel as though you can't settle in. You want to sleep, yet you want to get going.  The bodies way of growing, yet resting.  And so I sit at the end of his bed and begin to explain these articles and topics I've read.  One, to settle him in. And two, to put my mind at ease. Anxiety is totally normal. 

He said "so I guess I'll just sleep and lay here today"-

Yes, honey...you do that. 

Our family friend Zack brought over a stationary bike.  Kris loves it.  The goal is to get on it every day. 

Day Seventy showed us that we are moving in the direction that is normal.  I linked up with another Mama Warrior going down the same path as us.  Her son is Kris' age.  Day 63 post transplant.

She's in London.  She suggested we try Manuka Honey.  My only concern was the raw factor.  She also recommended carrot juice for his liver.  And after swapping messages this morning, my final message to her was wishing her PEACE, in her country. These senseless acts from the a soul-less, cowardly mentally twisted and brainwashed species.

Day Seventy had bags and bags of TPN delivered.  Along with tubes, syringes and all the preps for his hook-up Wednesday night. 

Day Seventy looked like a normal day in our cozy home.  A mom that still continues to wipe down like a ninja.  She wipes down so fast, and so good.  She hits all the spots that any human might come into contact with.  She also wipes down his phone.  His remote. His switches. His hands.  She's crazy like that.

She moves in and out of that room, checking it all.

Day Seventy proved that a mama would wake, prep a day for him, head to work.  Heading back at noon to feed and wake him up.  Circling around him.  Talking with him as he eats. Loading another load of laundry. Quickly folding.  Usually towels.  I won't use a towel twice right now.  And blankets. Driving back to work to finish things off. 

Day Seventy had lots of driving.  Praying as I hold onto my wheel to and from.  The urgent feeling when I walk into my home quietly whispering..."hey bub, you awake?"

Day Seventy was filled with returning as many text messages as she could.  Rosa, a dear friend of ours from Havasu that sends one every couple of weeks.  And from my Aunt and Uncle Wade and Ronda that know my broken heart, but they also know I am a warrior.

My cousin who celebrated a birthday - Happy Birthday Evelyn...thanks for the text back.  Who woulda thought I'd be writing about "Day Seventy" and transplant...etc.

Shelley, whom we chatted back and forth because our girls are dining somewhere up in Malibu enjoying the view of the ocean and partially blown away by that wind.

And then there's the famous Beth Pepper.  A friend I never knew would grow so deep into my soul.

A woman that knows the path.  The meds.  The body. The pain. The fatigue. ALL. OF. IT.

Day Seventy ended with a dinner, and more meds. It ended with a very tired mama.  And very challenged mama with the full moon. 

Day Seventy feels good.  It feels scary, yet good.  It feels overwhelming.  It feels peaceful. It feels like so much.

The miracle of what's behind, and certainly what's ahead.  She knows Day Seventy.

I hope and pray I can say we're at five thousand and seventy.  This chapter book that I hope to put high on the shelf. Super high....and out of reach. 

Only stepping on a ladder to pull it down if I need to share some wisdom and love to someone else--someday----

But only if I can help someone else.

Otherwise, that book will stay high up on the shelf. 

Day Seventy.

Day Seventy ended with an email from my new fellow warrior mama in London.  Expressing just how much we share in this, realizing as she read on my blog.  Another reason it feels good to document this journey.  The process of helping and sharing if I can.  

Day Seventy.  Thank you for being possible.

For my girl who spent the day with one of her best friends Madison-

In Malibu.  

Sharing lunch and love.  And life.

Love to you all....Happy day to you....

The full moon is doin' it's jive.  Just go with it....and take a long shower.  Cry if you have to!

Big Love,

This Mama Lisa

Rainbow After The Rain

I can describe our last week in one word- A.W.F.U.L 

Monday's labs proved that the uphill part of the rollercoaster does happen.

When you're told to hang on, and "things will get better".....they do.

It's not to say we're in the clear.  Or the woods have been cleared for us, because we have a whole lot of forest to clear.  And cover. 

His counts rose to 3.0-  His platelets still hovering in the 90's. 

HE GAINED 2 POUNDS OVER THE WEEKEND YOU GUYS!

Bill's sister Joni had Edible Arrangements delivered on Friday afternoon, and after pizza and watching him devour fruit, along with chocolate covered strawberries, I kind of felt like the tone was set for an eating marathon. 

2 LB's!  

When Jen called me while walking out from the appointment it was everything in me to not shrill a scream so loud across the office, that the entire family of employees and people that love us here could hear me.  But they did hear my relief.  All smiling back at me, sharing the exhale of love they've watched for the last 7 months. 

I could hear it in his voice as she handed the phone to him.  He wanted me to hear.  That firm understanding to Mom, that we are gonna clear more bushes in this jungle. 

We did find out that he does have GVHD in his gut.  But here's the thing about that. 

And to give you a good idea why it's actually a good thing, read here:

The severity of acute and chronic GVHD can range from mild to life-threatening.

Doctors often see mild GVHD as a good thing after an allogeneic transplant when the transplant was done for a blood cancer. It is a sign that the donor’s immune system is working to destroy any remaining cancer cells. Patients who experience some GVHD have a lower risk of the cancer returning after transplant than patients who do not develop GVHD. If the transplant was to treat a disease other than cancer disease, like aplastic anemia, then the doctor may want to treat even mild GVHD. 

And to think that the miracle of science. Of medicine. Of donors.  Of our German boy.  And his stems working hard in Kris' body to keep cancer away. 

You guys......

Simply beautiful.  

We have a long road ahead still.  But let's just say I can see a rainbow this week.  

Or maybe we can see more grasshoppers.  These fellers on my porch.  Happy in their life.

Happy Taco Tuesday!

Love to you all, and big hug to my prayer warrior friends and family!  

Keep that vibe going!

One day, one hour at a time----

May we pray for Peace On Earth, and especially in Brussels - 

This Warrior Mama Lisa

Monday's Have Us Like.....

I'm at work today.  Jen is taking her lover to his lab and doc extravaganza day.  

A day that we prayed over the weekend would be filled with good news.

I even cracked a joke this morning while saying my good-byes to him and said "Tell the doctor you puked up a big worm over the weekend...that bad guy was eating all your food"- 

We all know that he's much better today.  He was way better over the weekend.  Saturday and Sunday.

Still weak.  Still pretty slow, yet stepped up and out more than he has in over 10 days. 

My heart was so full last night after preparing a large meal for our family.  Dining all together.  To hear from Kris that "This is my favorite thing ever Mom, to be together..sharing a home cooked meal"

As a Mom, and for those Mom's out there, can attest.  Those words ring big in my heart. 

Even when we sit in the living room sprinkled around him on the couch with his tray. 

It's just being together. 

On Friday at our appointment, I stuffed him in a corner in his wheelchair and asked to take a picture to send Jen.

And this is what I get. 

Crossed-eyes.  And silly-ness.

I love me some funny.

It was a long day, but worth sitting next to this dude.  Chatting, laughing and rubbing his fuzzy head. Something he kind of likes.  And boy that hair is growing in so fast!

I continued to encourage him to "Hang-On" 

Here's a sneak peak of his insides-

Pure beauty, huh.  LOL

Big love,

Happy Monday.....

This chick drove home yesterday, topping off my heart!

Big and Little

Little and Big

Full Moon coming to you soon- Like Thursday....and so.... Be alert, and be calm. 

Don't let the knuckleheads win!

I'm at work today...so PRAY for me, and hand me only nice people.....

This Mama Lisa

Things You Notice

It's interesting how things change in life when you get signed up and given free tickets to the most biggest, steepest and wildest rollercoaster.
Here are a few of the things I observe. Some currently, and some not.

• When shopping for groceries you want to get in and out super early to prevent being exposed to  germie people and germie carts.
• While getting a manicure and the worker continues to sniffle and slightly hack under their mask you almost want to get up and walk out.
• Hearing a simple sneeze in public places make you want to run.
• Each day you wipe the common spots down in your home like a ninja with wipies on steroids given to you by the hospital. 
• You stare at your son with more intense observation than ever. I over evaluate even his pupils. Not to mention his dark circles under eyes that always kinda tell me where his platelets and WBC's are. ------>Hello Mom intuition.
• You pace by the bathroom waiting to hear if help is needed. And dread diarrhea. Thank God he's been okay.
• You research "highest calorie" foods on your ipad, kind of funny considering we've always been conscious to healthy eating. 
• You constantly look for signs of sick people. Runny noses, hacking and coughing----BYE!
• Your hands are so dry and crunchy from washing, but found the most amazing olive oil coconut lotion given to me by Doris(Bills SIL) and it seriously cures all! 
• You have strength hidden in places you never knew was even there.
• You clean puke and shit from a doctors office bathroom floor like a pro, even though you're freaking out because he's ready to faint and your Mama bag and stuff is down the hall and doc and nurse have no idea where we went. But you stay calm enough to remind him to breathe.
• You cook faster and with more intention than ever.
• You stare intently in doctors eyes verifying words of concern.
• You are exhausted, but keep going because there is no other road to take.
• Your heart melts when you see him lock eyes with Jen, to soon do his little hand gesture hand wave.
• You have no desire to be out with friends even with invites to get out for a breather, because even though it sounds good to them, it truly isn't to you at the moment. #hoveringmama
• You still research leukemia and the lifestyle of BMT because you want to know the best of the best. 
• You still want to poop when you read statistics.
• You are grateful for each day.
• You are still so challenged with language challenged nurses. Wondering why English isn't tested and shaped in those nursing classes. The difference between he and she is HUGE.
• You get nervous each week after labs making your way to doc office because you never want declination, you're selfishly only searching for inclination. 
• You realize when people speak of the ups and downs after transplant, it's no joke. 

There's many more weird little trivial things in thr daily life of care taking and loving a child, grown or not in this process. Paperwork, medicines and administration would blow some people over.

Today marks sixty something days....I'm trying not to count the days because really, it's a lifetime of changes. Of praises, and begging for mercy. It's loving where you can and standing strong for eachother.  There's folks that would love a more one on one update about Kris. Family that want details. I try to keep this slice of life wide open, and detailed. Some days sadder than others.

While some days, I laugh my ass off because it's good to laugh. I can't do detailed reports individually by phone right now. It's more than you can imagine. So for now, bear with me and read Le'Blog for now...K? K....

And some days it's good to pour a nice stiff drink and sit back in sheer amazement.

That rollercoaster you got on. Man, the downhill part, sucks ass.

Today, he's up and outside fiddling with something in his trunk. An airbag. Whatever. It. Is.

He's up! 

Today marks two weeks of a whole different Kris.

And to that I say..."Thank you God"

Hope your Sunday is filled with good day dates, or good meals at home!

And some good wine!

Big hugs,

This Mama Lisa 

The People In Passing

Well, another week closing up shop, right guys? Ours started at 6am, wandering into our big handsome bald birdies room. His first big genuine chirp in weeks, "Morning"...
His second reply, "mom, I'm nervous".
And of course the standard reply from me ALWAYS, "Honey, you will be just fine..you always are".
And he is.
He's definitely one of the strongest persons I've been privileged to know.
The hard part was not letting him eat or drink because you know the drill..[Nothing to eat or drink after midnight] However, after I did my math, and figured that by the time they actually got him in that OR room it would be around 2. And dangit, I was right. So, I let him have water this morning. A few sips here and there. For one, to wet his whistle. And for two, hello dehydration zone.

We made our way to the beautiful Helford building at COH. Only this time, we'd navigate by wheelchair to the second floor. A part of me felt kind of queasy and anxious as I wheeled him into the elevator. You do remember how I have this thing with the smell of elevators. Ew.
I brought along his coziest blanket. Covered in that, along with my mama bag tilted on his lap.
I also had an ice chest in my trunk ready. For discharge. Crackers and Gatorade. What's interesting, is carrying around the 19 pills trying to figure out when and how to get them in him.

They took him in. I stepped out. Soon to be called. Bedside smiling at eachother, while the little oxygen mask filters fresh air in. A new nurse in recovery would make his way in, introducing himself "Clovis". Instantly I feel his vibe. He apparently carried on a conversation with my bird as he was coming out of a propathal (Michael Jackson drug totally spelt wrong..sorry). They had discussed a burrito that Kris wanted. Kris has always loved a good Carne Asada burrito. Interesting though, all he talked about prior to the procedure was pizza.
And so, Clovis and I had a good laugh. We also began to discuss this life. This life Kris was handed.
How it started, and all the goodies that came in the package. Chemo. Doctors. Transplant. Be The
Match. International donors.
Clovis came from Texas. From a cancer research center. We both shared a tiny bit of our path. All within 30 minutes. One of the things he learned about me is my squimish antics with needles. And ports. IV's. Sharing with him how a home health care nurse would soon be coming over to help me learn. Because we need to get him filled with calories and nutrition.
He left for a short minute, returning with "Okay Mom...you are gonna do a favor for me...you are gonna flush his port"
Um. Ok.
The cutest part of it, was I had no chance to pull my coward hat on.
Game on. Pulling the attached IV lines off. Swiping and cleaning, first the red one. Wiping it in circles no less than ten times, the more the better of course. You're dealing with a direct shunt right into your sons heart. Soon, I'd learn to push 3cc's in, pull back until I'd see blood in the line and then push it back. All of it. The whole syringe full. Moving over to the blue line next.
I felt a tad but uneasy, but nothing I couldn't do.

Stepping up.

Learning from someone in my path. A new introduction to a new nurse. To someone that cared enough to teach me.
The kindness in his heart to navigate a nervous mom.
Soon, we'd be loaded into the car home bound.
Talking pizza all the way down the 605. Arriving home, jamming to The Milk Barn to get him the craving he deserved. Knowing that rule was broken but trusting a family run homemade pizza.
He devoured 4 pieces. Jen arrived pushing him to eat that 4th piece.

And soon, our home health care nurse would arrive. For the first consult.
And the language barrier was at 95% on my meter.


But something I suffer from is inappropriate laughter at inappropriate times.
So standing bedside. Nurse. Jen. Kris. And me.
I started to get that feeling. Of laughing.
Why? I can't explain.
I don't think I will ever know.
This was our consult. I'd move her into my kitchen to finish with the trillion repeat answers.
Meds. Schedule. Paperwork.

As she left I locked our front door. Quickly thinking to myself...what a full day it was.
How lucky I was. My prayers for peace. For answers. For a decent day to help him.
And even in meeting people in our passing of this chapter. Clovis. What a saint. Port Flushing Saint!
I'm thankful.
I'm shameful for laughter when it shouldn't be.

But sometimes I wonder...maybe that's part of the plan.
Maybe it's part of laughing in the rain.

Happy weekend to you friends...

I have to work. A desk I've neglected all week.
Our littlest is coming home Sunday. She's done with finals. She's done with sorority "Little" stuff.

I'm thankful for another day.

Hoping to laugh...just a little bit more.

Big Love,

This Mama Lisa

Ps. Blogging from my ipad in bed creates bloopers in grammar and spelling...please pardon me!

The Good And The Challenging.

This week has been filled with food. And lots of it, going in to Kris' room tray after tray. At least looking at the dishes, my hands, and the many containers filling my fridge.  I've been to the grocery store twice in a week, along with Costco.  Not a huge trip to Costco, I managed to walk out of there spending $46.00.  I know, I'm pretty bad ass huh. 

Anyway....Happy Saint Patrick's Day!

Our normal lab and doc day. Day 64--- One that Kris is too weak to walk in and out of, and so we choose a wheel chair straight from the parking lot.  He waits as I run to park the car. Always offering that side dimple smile as I make my way back.  Holding my huge basket purse like we're going on a hike in the mountains.  Only this time I'm armed with extra pants--(hellobathroomincidentonmonday) along with Gatorade, a little hand towel, and puke bag.  

We'd make our way to labs. And down to the basement to see our doctor.  Remember we are switched back to our original doc.  She's a sweet lady, but I'm still grappling with the change.  Change and I don't do well. I'm a huge creature of habit.  If it's not broken, don't try to fix it type of gal. 

Sitting in the waiting room waiting......and waiting.....and waiting......and waiting...and he's nodded off.  And I begin to check around.  Asking, what the heck, we've been sitting here almost an hour.  I have a dude to get home and back into bed, or at least fed. 

"I'm so sorry, she's running late....she always seems to run a tad late getting into the office"-

Um, w.h.a.t.   

Another thing you all know about me is I can be VERY impatient.  I also have a VERY hard time sitting in a closed-door room, waiting. It's almost torture for me.  Being grateful we weren't quite stuck in the closed door room, I still managed to roll my eyes a couple of times.  Trying to keep my dude somewhat coherent, so I keep pointing out how cute people wearing green look. He'd just smile.  I wanted him to walk to the room, versus wheel him in.    

They finally call my boy, and we'd stop at weigh, vitals, etc. 

She does it all, and he flies by.  Perfect BP. Perfect Temp. Perfect HR.  And begins to walk away to get our room.  I'm like...um....don't you need to weigh him?   :)

Oh, shoot! So sorry, yea I sure do!  

He's lost 2 more pounds. 

I feel like sometimes I get punched in the gut by these little tiny fists.  Like sometimes I am praying so hard, hoping to SEE answers.  To see little milestones.  The most important I guess are his counts. 

We get into the room.  She's sweet as ever.  I'm kind of taken back by the hour late because she runs behind...But I still smile, because she's reading science and things to keep my boy alive. She reading aloud, as I am absorbing it all. Kris just watching me. 

Mondays WBC 2.0

Today 2.4-  Thank you Jesus.

Platelets 69

Today 89

All the rest go hand in hand pretty much and I see the graph on whether it shows an up or down arrow. 

And it all seems relative.  And decent. 

But....he's 120.

He used to weigh 164ish.  

I ask her what the plan should be.  Just to give you an idea.  I cooked huge homemade meals all weekend and all week.  He eats a good solid three to four meals a day, with fat filled shakes and snacks in between.  The only difference being, we don't eat out.  We really can't. So we don't run to pizza places, or fast food. 

I did get him Wing Stop today.  Simply out of sheer desperation.  They fry that shiz anyway...and if he'd eat 4 or 5 of those stinkers with an orange soda and even a few fries...well then good. 

The decision from the doctor would be to put him on TPN.  At home.  She began to explain to me that a home health care nurse would be calling me.  That they'd arrange for a nurse visit at our home.  Teaching me to hook him up for nighttime nutrition.  Filled with all good things.  That they'd be calling me today for all the arrangements. 

Upon arrival at home, and after feeding him those wings, he wandered into my room.  Laying on our bed, with our cozy dark room and he fell gently to sleep. These lab and doc days take everything out of him. 

My phone rang and an incredibly nice gentleman was on the line "Terrance" making the arrangements and explaining the process for me.  He is the type of guy that has a silly-ness and light hearted love in his job. Popping little jokes the whole time.  Telling me that though it seems huge and scary, it's not.  That they have the best of the best nurses.  To train me.  My biggest fear is always the language barrier.  (started off a little rocky when the first scheduler called me on the freeway in my car driving home to confirm our address and referred to him as a "She" not "He" and you'd think I was gonna lose my shit shouting into my bluetooth cruising down that 605.  You mean, HE-  BIGGEST PET PEAVE my friends! 

Anyway....

That's where we are. Down two pounds. 120 lbs. Doesn't care to talk to anyone.  Sleeps the day away.  Walks around the house gently and quietly.  Taking a shower is a huge endeavor.  His phone is blown up with messages. Voicemails and missed calls from the love of friends out there. His buddies that growing more and more concerned.  

He'll get through this.  Transplant and the days after are exhausting! His body has been through major reconstruction.  Major chemicals.  And poison.  And new life.  And changes of major meds.

Taking one more steroid away today, which always frightens me, but I know is needed.  

The thought of changing his iv at home, and as she said "Port Flushing" and this new regime to our process is scary.  For those that know me, I run at the sight of needles.  Needles, and tubes coming out of my kids arm....awful.

But I will step up, and do whatever it takes to get through this.  I've said it a million times. 

Until my last breath. 

Love to you all.  Be safe out there tonight if you sip green beer.  

Enjoy life. Every second you can.  

This Mama Lisa 

The Soon To Be Port Flusher IV TPN Changer!

And Kali is coming home Sunday with hopes to have some fun on her Spring Break, where in fact she will help love and provide for her bro. 

Pray for him tomorrow he has an endoscopy for his tummy.  Told not to eat or drink anything after midnight....and to sip the minimal amount to take the 20 pills he does earlier than normal. 

boom.