Doctors, Medicines, Decisions and Suggestions...

Well, today marks 99. Ninety nine. It also marks a morning as per my usual that I woke, worked out, started a load of laundry, watered the flowers, tidied my kitchen putting away just one mug. One water glass from last night and exchanged one towel for a clean one. Empty nest again as he's learning to fly. First week away.

I never got a call or text from Kris last night that he wasn't quite feeling well. His tummy. His mouth. A little rash under his underarm. And he had puked. Along with chills.
He called me this morning. A lab/doc day that I am pulling myself away from because he's doing very well. I have little whispers from family and friends that say..."let em go" and "he's doing so good"-
Deep down in the mama blood that flows from me, that is hard. Very very hard. As a matter of fact, I just mentioned how I have this sick feeling that any minute I'll get a call...and start the drill. And so you know, I want to be with him through each visit. Navigating each doctor. Each nurse. Taking my notes.
He also mentioned to me that the bump on his leg seems bigger. Mentioning a fear of the leukemia returning. I was on my way into work and instantly I felt like pooping. My stomach, body, heart, blood pressure..EVERYTHING...fries like a short circuit. I got cold. Than instantly began to run down my normal talk about...."honey you know the Sprycel, and the antibiotics along with decreasing the tummy GVHD meds are probably messing with it all. My gut said...[His counts]. I've had this messed up relationship with platelets.

I said, drive to the Target parking lot in Downey and wait there. I needed to print some time sheets, and payroll along with a couple messages to return and I'd meet him there at 10am. His labs were 10:30.
When I arrived in the parking lot I could see him on his phone. Smiling. But pale.
As he got in the car I could hear congestion. Asking him more about how he's feeling...etc.

He was irritated as we drove that 605 northbound to COH.
One thing I've begun to understand in this journey is the PTSD patients suffer from while pulling into that awesome place is real. The energy he puts off is unmeasurable. It's awful as a matter of fact.
He was expressing to me how somedays he truly feels scrambled. Almost as though he can't comprehend and release a normal mental output.  A feeling of mental exhaustion and doom. He's frustrated and feels less of a man. Kris as a young guy was part of The Gate Program in elementary and middle school. What he tested high in was "Intellectual" - the deal with chemo, radiation in lethal form, med after med...is a pickled mind. And it's normal.
But HARD.

When we got seated and were called his port line(red one) gave them grief(sometimes clogged, they have to use Heparin) and so the process took about twenty minutes.
Soon, we'd be down in our doctors office. Waiting. And waiting. For an hour and a half.
One thing I've learned, is that's a delicate place with delicate souls. Some fighting and some grieving. And so if the doctor runs behind I gently remind myself and him...someone is in need. And we've taken our "needs"'at times too.
When we arrived in the room I could feel Dr. Sahebis vibe. Full moon mania, she's working fast, asking questions, directing orders..briefly over viewing meds...etc. he begins to tell her what he's feeling. She checks his rash..(put cortisone on it )..she tells him to open his mouth after he rubbed his throat expressing it was sore. He has Thrush. It's basically another childhood ailment. Again, new immune system. She listened to his chest. Lungs clear. She prescribed him another 2 more meds. Along with one more for Mondays spinal biopsy. Kris speaking up about how he believes Sprycel is making him feel terrible. How his counts are most likely compromised because of it.
Truth is, I think he's right. I've been navigating through these meds, appts. Counts...all of it.

What I believe to be true, is we become our own self help navigators. She's the sweetest doctor...but it sometimes lies in my hands to point things out. She looks at summary sheets and labs, and vitals.
But she's human.
When our nurse weighed him, Kris said he read 60.2 on the digital scale.
Where in fact, I have his sheet that says 62.5.
That's a 6 pound difference.
Humans.
Life.
Worry.
Medicine.
Surviving.
Scared.
Scarred.
All of it.

I'm home now. And after picking up more meds this afternoon I got home receiving a text from him with a picture of Bucks. He's not hungry. Doesn't feel great. Fighting through because as he puts it...he's tired of being tired. I mentioned how wiped out I am when we return home from COH. I am truly wiped out you guys. His reply was "Mom, maybe it's your huge bag you carry"- chuckling to be funny.
I gently said...ya maybe it's this big bag. Of stuff to protect you. And me.

And I love you, wash your hands, take your antibiotics, and remember to push food in to eat.

I don't want to nag. I don't want to live on edge. 100 days is nothing. Yet, everything.
I'm not doing good today. Meanwhile yesterday I was on top of the world.
I'm a strong mo-fo and I'm not backing down. I'll sort through the med changes. I'll call out the nurses and doctors. I'll pick up meds and question mgs. at the pharmacy. I'll continue to wipe his dirty hands with wipies when he's with me, and bathing his phone in antibacterial wipes. I'll piss him off with my messages. I'll still question what he's eating and where. I'll hover tonight because I'm scared.
I'll toss and turn because of how fast things change.
His counts have dropped. My gut says they will continue to. Sprycel will do it's number on his taste buds and saliva. The new medicines will hopefully kick thrush to the curb.

I won't take life or 99 days for granted.

999 days either.

Today, I was slammed down again.

But nothing I can't handle.

Full Moon as pretty as you are.....bye.....

Happy Thursday!

Counts-
WBC 3.7
RBC 3.22
Hemoglobin 10.1 (low)
Platelets 98


Praying for all good things over the weekend...especially for him to just feel good..

PS. While pulling into work this morning I asked kali if she had heard from Kaiser about her cyst. She casually said "oh ya Mom, they called but didn't leave a message"-yesterday...
.......I casually without shitting my pants walked into my office while emotionally fried.....began to call their offices back. Any news from pathology? Her sweet nurse..."Oh it was benign"- and casually said...Mama, don't you worry too much, it's not always what we think....

And I thought....

Man, little does she know.

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

Dearly Beloved, we are gathered here today, to get through this thing called life...
Rest In Peace PRINCE!

Another fallen icon....Heaven must be one big party...

Love you all..

This Mama Lisa

Thanks for letting me ramble. Better than crying!

On Cards From Your Kids.

I'm not sure cards from my children ever felt more sincere.  More important if you will.

I've always read them with sincere gratitude and so much appreciation.  The card they gave me on Sunday had the most loving words from them. 

Kris acknowledging his love for me, but in a new found way.  A way we never knew we'd find.  A way any mother would love and do for their child.  A way that we all dug deep into eachothers soul to make it from one day to the next.  I will never forget the look on his face when they discussed his diagnosis in such a matter of fact way-  I can remember feeling like someone punched me hard.  In the face.  And instead of falling to the ground, I did what any mother would do. I proceeded to plead with him to believe.  To believe that everything was gonna be okay.  When truth was, I had no idea.  I spoke from a panic mode that only God knows how I got through.  I will never forget pacing the halls as they administered his first chemo and he went into some sort of "riggers" they call them.  I watched my daughter collapse into a gurney down the hall next to an elderly sweet woman pushing an iv cart.  Caressing my daughters head and telling her it was gonna be okay.  I could hardly walk. Or breathe. Or console my sweet baby.  She walked down that fucking hall to get out of my sight. 

And yet, we all marched on.  All of us. 

My son held on extra strong.  For us.  For me.

I remember him telling me he sobbed one morning in the shower because he felt so scared for me to lose him. 

To put me through that grief.  He remembers running around the front yard as a little guy and me standing there watching him. Something about the love of a moms face.  Her eyes. Something you feel as a little guy. 

We've always had a tight bond.  

He swore to keep pushing, for me.

And so words.  They mean so much more now.  Hugs mean so much.  Laughter especially.  We all rub each others backs when just sitting next to the other.  We'd never do that before.  We tend to look deep in each others eyes if something is bothering.  

We all send text messages each day throughout the day.  Mostly work related for him now as he's trying to get back in the grind of life.  He still sends me silly pictures of my grand-doggo.  

Everything has a different meaning.  Love you's mean so much more, if you can even fathom adding to that term.  

His words inside of the card etched deep.  Same with Kali.

I remember staring in his eyes when he was handed to me as a baby and was scared to death. 

I never knew I'd love something so deep.  I never knew how much I would fight to protect a human from things.  From pain.  From heartbreak.  From illness.  From scary. 

Kris took this picture of me on my last night of administering his TPN.  Something that I will go to my ashes proud to of made it through.  It's not the most flattering picture.  As a matter of fact when he posted it on his instagram account on my birthday I thought oh, man. How bout' those neck bones...haha- #lipbiter

It's best to have pictures of these things in these chapters.  Those tired evenings when my tired hands and eyes worked hard for him because I had to do anything and everything to help him get better.

The inside of my card read :  

You are the most thoughtful and caring person to ever walk this earth. Thank you for all you do for all of us. I love you.  Kristopher- Bub

I love you too Kris.

There's a full moon in our worlds right now. And to say the tides are pulling us all in different ways is true.

Bear with me as I navigate through these days.  To read my blog each day and wonder when and how I'll ever shake this life style of mine.  Some of you thinking...dang, enough of this cancer/transplant/crybaby stuff----The sadness or happiness in my world.  Thank you for bearing with me.  Until I'm ready.  Please bear with me. Can you imagine my poor Bill...it consumes our conversations.  I just can't stop. 

Can't stop won't stop.  kidding.

I still wake each day petrified.  What's worse, is you know how hormones kick our ass? Well, sometimes I wake and realize this mess and think oh my gosh, it's real...and this drop of butterflies still enter my tummy and I wonder when...when will that madness stop.  Will it?  Will my body excrete this trauma forever?

Because man....if so....

Praying each day that one day this will be just a memory.  Not the best, but a memory.

Thank you for standing by my side guys...

Keep pushing.  Hard.  And let this full moon do it's thing.  

Smile at the meanies.  

Or hide. 

Whichever works best for you.  

Or if you're feeling really daring, ask me to send you a drunk picture of me from my birthday weekend Saturday night. You'll spit your drink out.  #zombie

Note to self- Limit yourself girl.  Limit. 

Or....."Dance like nobody's watching"-

Maybe that. 

You've come a long way baby....and you always hold HOPE in your hands...

This Mama Lisa

A Moment In Time.

Well Helllllllo kids!

Warning.  Long post.  Editing skills at a sharp 60%-

Desk full of papers.  Still lots to go. 

But.....

A post!

I mentioned last week how we were sneaking away, for the day and night.  I was most looking forward to basking in the sunshine.  If not sunshine, well bar side sipping a cocktail with the love of my life.

Friday afternoon Kali had her little procedure to remove a cyst.  And so we navigated that rodeo like two cowgirls.  Grabbed the bull by the horns, and tackled em down. 

And when I speak plural, I truly mean "we"-  

My calm stature has become the newest fad in our house.  Therefore, as we arrived all I could do is chuckle along with her, and talk.  We were both nervous, but you know how it goes, laughter and chit chat cures all.

 It wasn't long before she was called back--"Calin" (as they pronounce it)We'd be sitting in the little surgery room with thee nicest doctor. I could feel compassion the minute he put on his Bose speakers filling the air with "Adele"-

And not just Adele, but the song "All I Ask"-  The minute they started to prep her and get her nice and numb, this silly-head had tears falling.  And not just any tears.  They were outright crocodile tears and that lump in your throat that is starting to choke you out with an outburst.  I held it in so hard. I tried. 

The nurse asked if I was okay....

I began to explain that --------------->  I'm just squeamish about needles---

When deep down it broke my heart to sit and watch my littlest birdie under a doctor.  And nurse.

More medical. More doctors.  More bright lights.  More blue medical band-aid paper.  More of all of it. 

I couldn't hold it in.

Freak. 

Suffering from post traumatic is real. 

Within a half an hour, we were on the road. She had 3 stitches.  A puffy little lip. And ta-da' completely fine. 

They send the cyst to pathology to make sure all is good. He informing me as I wiped my silly eyes with mascara stain, that they will let me know everything is fine, either way. 

God has my back.  

Remember that. 

Bill had planned a little dinner with our 6-pack group.  And just like that....

I was sitting shot gun to my buddies, sipping good wine, and chomping on a dinner that will go down as the best at the Turks household.  Russ is quite the cook and every single time he cooks for us, I leave there saying the same thing. THAT was the best...and then there's another one that tops it. It's simply amazing. 

Beef Wellington-Green Beans, and not just any ol' green beans...like gourmet to the core...and red potatoes. 

The wine was just a slam dunk.  ALL of it was delish!

Russ the cook!

 Something we always seem to talk about while together is our duration of friendship.  We all met about 15 years ago. Maybe even more.  And it seems as the years filter through there's been this little six pack thing.

We gather when we can.  We've all been through so much together.  Life, loss, illness, financial, sadness and happiness. 

 This cake you guys....omg.

Just like every relationship, really.  You hold close to the memories. The moments.  Later it makes those precious memories even more so when you look back on.  Always chalking up each year and each month as a gift.  Because we've witnessed just how things change. Fast

I am forever thankful for my friendships.  With all of you.  

Kali was up and out to yoga before I managed to crawl outta my bed.  And just like any normal lazy mom, I laid on the couch waiting for everyone to get back.  Bill worked. (Actually Kali had a little incident with one of her stitches falling out...so she drove herself to urgent care) Mom of the year didn't go with her because....hello-------> remember I was waiting for my chariot to come home from work to slide me down to our fancy hotel.  

Bags were packed by the front door like a little girl waiting to be picked up by our aunties (we never had the grandparent thing, ours was aunties)-

He arrived, changed and down the road we'd go.  I promised myself to not nag him while driving.  To zip my lip. And although I get car sick easily I told myself that when he tailgated, or sped up, I would look at my phone.  

Problem solved. 

We arrived.  At my favorite resort in all the land. 

I have a problem with hotels.  And my problem is germaphobe issues.  So you land me in a good hotel, and life just instantly becomes full of butterflies and unicorns.  Reality is, financially we don't/can't do this often. 

And so for me, it's an extra splurge. I'm that girl that saves the napkin because it says St. Regis.

And the matches, because holla, who has matches anymore?.....

They handed us champagne and asked us to chill a bit while they got our room ready.

 Forty Six. 

 The day turned into afternoon.  Afternoon turned to evening.  My wish was to sit in the sand, with a bottle of wine (we brought our fancy schmancy bottle Bill bought me for Christmas telling me to pull the cork when I was ready for whatever occasion my heart was ready for)

 It was the moment.

 Just looking at these pictures melt me.  If there's something in life I cherish most, it's moments you make. 

He's truly my best friend.  We love to be alone.  We love to sip wine or cocktails and be silly together....

   I literally looked over at him and said....this is what I needed.  This is what I wanted.  The last 8 months have really taken it's toll on me.  I felt quietly still.  And safe. 

 I will never ever be the same.  I won't.  

I can step away and have moments sipping good wine in places that are well out of budget.  I can step away and hide from reality.  I can step away with my lover and hold him tight, and still weep, because sometimes I just can't stop it. 

I did manage to drink too much.  That dang wine led us into the bar. From bar to room..  From room to restaurant.  That's where it gets blurry. HA!

My guilt the next morning feeling as though maybe I shouldn't drank so much.  Maybe I should of done this, or that.  Truth is, I was me.  I was safe with my love in a place not far from home.  A place I could send pictures to and from the kids.  

I cherished every single second in that resort.  

Loving this pillow adorned with birdies.  I love the colors. I love the shape.  I love it.  

 We'd hop on this little trolley down to the beach.  Our cocktails made in our room making the ride extra silly. 

 Smiling at each other.  Through the storm we just rolled out of.  That smile we give each other.  

It has new meaning.  It has more heart felt wrinkles in the corner of our lips.  

That smile.  

I was looking forward to our birdies making their way to us on Sunday morning for brunch.  

 Kali texted me they were on the way....I felt so anxious.  So happy!  

My concern was finding a place that would serve Kris safely.  A place with open air, and a chance to dine without his mask.  A place we'd all be together, not pushing to have others join us. I needed solace.

I craved my small unit.  Just us. 

  I wanted and needed peace.  

The sad part?  We have one picture. 

One. 

My babies....Shuttling down to the shore....

I received numerous phone calls.  Messages.  And so much love.  

I can't thank you all enough. 

You've loved us through some of my hardest days. Days that I felt I couldn't go on.

You were there. 

All of you.

It's almost surreal on your actual birthday.  It kind of feels like just an average day, and yet filled with so much goodness-

The kids wrote out their cards to me with sincere love and gratitude.  Words my son wrote to me will be etched inside of me forever.  Kali and her detailed way of presenting gifts.  All in a basket as her mama loves.

Jens way of shopping for me with the details of my hippy earthly love.  

Bill's surprise of taking me to  BAD COMPANY next month!

Yeeeefreeeeaaakkkkinhawwwww!!!!! 

Sunday night as we tucked in from such a wonderful day, I prepped. 

My mind.  My heart. My binder back out from my home desk. 

The binder would make its way back into that woven mama bag.

Ready for my questions on Monday.

Med changes, and concerns.

I've been concerned about cancer and sugar.

Asking again for my 5th time what does the 100th day really mean.

What happens next.

Bone Marrow Biopsy next Monday.

Results hopefully next Thursday.

A port removal appointment staring at us in the face.

Something I never imagined.

Still petrified of cancer.

Still hovering.

Trying to let go.

Watching him pack his bag to head back to a normal life. With his girl. The dogs.

Beach.

Life.

Still hovering.

Praying like a maniac.

Smiling under the beautiful expensive Burberry glasses he bought me-because he says I deserve them.

Sorting meds again.

Dropping prescriptions off for another antibiotic because he has little bug bite on his leg that "could" get weird.

Receiving a phone call from his doctor telling us to increase both Sirulimus and tacrulimus-

Filling his med container to the brim, as I do each week.  Only this time taping them shut because he was leaving home.

He's ready to start a new chance.

He doesn't feel like asking all the scary questions, because his mom does.

She will continue to fight until day 5,868,899-

He just needs to continue to heal, and hope for a cure.

Dr. Sahebi works with me. 

She gets me. 

She hugs me, and she always rubs his cheeks. 

She loves her patients.

She's on our team.

She listens to my suggestions about some meds, and how to slightly take them away.

She knows I am a warrior.

She has triplets, -Boys.

They are 12.

She understands me. 

Sometimes asking questions, and pausing because I cry in between the same fucking question.

She understands.

Yesterday was day 95-

Friday marks 100.

But really for me, it's not the number.

It's believing we can get through hundreds and hundreds more.

Praying.

Loving. 

Learning.

Most important, is remaining grateful.  For our gratefulness in this storm is what will keep us going.

It will give us the chance to say thank you to every single family and friend that has loved him right up to day 100.  

Some days I will never know how we got through.  I still don't.  I still don't know how I drove to and from.  And worked.  I don't know how I've remained strong when at times I feel like caving. 

I won't. 

Ever. 

I will fight this fight, and remind others to do the same.  Don't give up. 

If you have a monster chasing you, just keep praying.  And don't stop.  Don't give up.

Don't ever give up.

Leukemia is a monster.  And I will walk the remainder of my days on this Earth trying to help others.

Have Faith.  

Faith, prayer, and love. 

I promise you-Some way, some how.....you can get through..

To the transplant families in the fight right now...remember this-YOU and THEY will get through.

If one day isn't good, the next just might be.  Don't put your warrior stick down.

Don't stop.  

And if Sara Irons reads this at City Of Hope....You, my friend. You...are the reason Kris kept going.

Day +12- Hardest day ever.  

Happy Tuesday.  

I'm trying so hard to get my heart back in the game of life.  I still have lots of dust on my shoulders.

Lots of worry.  Lots of fears that grab my ankles and shake me to the core.  But I keep going.

To the friends that understand when I can't make it out for mid-week dinners or happy hour.  I'm still an hour by hour, day by day girl.  It's just me.

I will always offer you love. 

And a smile. 

Circa 1993-How bout' them shoes.  And the hat......?

To my homegirls that love me so much....thank you! 

The little gifts of flowers and succulents because you know me so well....THANK YOU!

Erica's cookie dough, should be sold, but we're gonna keep it on the down-low-

The notes and love...the big hugs...all of it...thank you!

You keep me going----

My aunties. Thank you!

The cards from family. From my sisters-in-not-law-but-love...Thank you!

Another year.  Another chance.

Forty Six.  Come at me, baby.

 Just keep my son here.

Day 95 Stats-
Weighs 138!
WBC 5.2
RBC 3.22
Platelets 113
All good considering no more steroids (exception one for gvhd in tummy)
Now on Sprycel (oral chemo which agitates counts too...keeping a close eye on that too)

Hugs, 

This Mama Lisa 

Finally Friday.....

 I hear this weekend calls for sunshine.  I have great hopes to sit in the sand by the ocean side with my loves.

• Leave your worries by the shoreline,
  And run your bare-feet through the sand,
  Let the water be a soft bed,
  When you cannot bear to stand.
  Make friends with flying seagulls,
  And hold the sun up-to your palm,
  Before you duck beneath the water,
  Where the world is mute and calm.
  Tell the fish all of your problems,
  As they all come swimming past,
  When your lungs are close to bursting,
  Swim above the waves and gasp.
  Let the water hold your sadness,
  And wash it right out to the sea,
  So like a message in a bottle,
  All your worries are set free.
  And the sea might make you feel alone,
  But the world has troubles too,
  For how else do you suppose,
  The ocean got so blue?

• 
  

I wish you a weekend full of laughter.  Good food, and exceptional wine. 

If you don't drink wine, well good margarita's. 

Or if not margarita's.....ummm 

Martini's.  

If not martini's...well, then lemonade. 

Add vodka.  

Just kidding.

Have some iced cold water.  Add lemon. 

Happy Weekend to you....I AM SO LOOKING FORWARD to mine.

Keeping you all in my prayers-

xo

This Mama Lisa

When You Wait Almost 2 Years.

When Kali was graduating, or just prior to, I felt a tad bit overwhelmed.  Mentally and financially.  It seemed there were so many little financial obligations that fell into immediate priority place.  First being, getting her dorm stuff ready for move in, along with dinners, cap/gown, and I can't even remember all of it right now, but just alot. The one thing I put way back on the back burner was her senior portraits.  First of all, the minute they sent me her "proofs", I instantly fell head over heels in love. With almost all of them.  From the little cap and gown, to the awkward poses they had her standing in.  I truly loved them all. 

Problem was, they were like fifty thousand dollars.  

I would leave that email, and the binder of their so-called "specials" (insert-rolling my eyes)- to the side of my desk.  For months I moved it around. Then it landed behind my desk.  In my desk.  On my desk. 

I could not get myself to pull the trigger and order them.  Or even one.  One, being 200.00.  

I actually thought our school played some jacked up joke on us by having them taken by a place in Anaheim.  Our school is on the border of Seal Beach.  

I called bullshit the minute I called and they told me we would not only have to pre-pay them, but the shipping was/is $20.00-

And so.....they floated around on my desk.  I always try to remember little things I wish for, so when the kids ask that honorable question on my birthday/Mothers Day/Christmas- "Mom, what do you want"--

I never seem to remember things like this. 

Please order Kali's Senior pictures and only get one.  "Don't spend fifty thousand dollars" on their sick game of entrapment. LOL!

But, again, month after month I would forget.  I have Kris' picture on my living room table.  And no Kali.

Last month, I pulled the trigger and bought two.  Two eight by tens.  Calling and asking if they had ANY specials for grad's of 2014 (LOL) -  $89.00-

After ordering them I felt like a little weight was lifted from my shoulders.  She worked so hard in high school. Both of my kids did.  It's an honor to walk into anyone's house to see pictures of hard work.  High school and college pictures.  Such a beautiful honor of achievement. 

Today I had to pick up parts for the shop.  As I was making my way down Kraemer in Anaheim I thought...wait a minute, I think I'm close to those mofo's holding my pictures hostage.  

I was .02 miles away.  BAM!

Pulled in. 

And here you have $89.00-   8X10 =  2014

Winner Mom.  

I sent this to her.  And our chuckles are real. 

Kali, even though I flake out on stuff like this because I have a hard time spending fifty thousand dollars on pictures.  I am so proud of you. 

I am proud of the girl you are evolving into.  

On Monday Kali was at her Chapter Sorority meeting (one she meets for every single Monday night-COMMITMENT!) and one of her sisters tried to make her way out of the room they were in, falling hard down on her body into a full grand-mal seizure.  Jumping up to assist her, caressing her face, talking to her as she shook, and eyes rolled back.  Kali stayed calm.  Feeling for a pulse.  Talking to her through it. 

Staying with her along with her "big" until the paramedics arrived.  

A place that began to explode with panicked girls shrilling with fear.  Kali remained calm. 

After they took her away, she called me.  I could tell by her tone, she had been shaken. Yet remained fiercely calm.  

That's our Kali. 

As we hung up, all I could think of, is wow.  

She's an awesome asset to this world.   As I said to her, good job honey.  

Maybe it's a sign for her.  Through health care, and the path she walked so far with brother.  Maybe it's her calling.  

Kali, you make me so proud.  

Do I make you proud buying your senior portraits 2 years later?

No?

Happy Thursday!

Kris' counts look decent, whites and platelets dropped a little.  Up the anty on the Sirulimus, and tacrilimus tonight.  

And his doctor?  She wants some of the fish they caught.  

Life, I tell you....

As I end this post, his song just came on. 

Simple Man.

Go enjoy the night kids...

This Mama Lisa

PS-  Keep Kali in your prayers tomorrow, as she gets her little cyst removed in her mouth on her lip.  Might look like some botox in the houseeeeeee tmrw night!   #bravegirl 

Worth Mentioning.

Can I just say holla to Thrift and Goodwill Stores?

If there's one thing I love in this world, its finding little treasures. Whether it's stumbling across a good find at a yard sale, or cruising through a goodwill store, or thrift store in an odd town.  

I can't tell you how many little treasures, that I treasure from yard sales, thrift stores and Goodwill's.

LOVE them. 

Finding things like this....

 Home-made quilt, with the makers little note and signature on back....LOVE- If I could share with her how much I love it, and what a warm loving home it went to, I would.  (Half of the proceeds of this 11.00 quilt, went to the Lake Havasu Humane Society-Double Holla!)  I washed it with my yummy soaps, and Downy Softener, laid here to air dry- Delish smelling!

 Hello ceramic bowl....so nice to meet you....

While I shopped, I'd receive this picture of my handsome birdie.....

I love you too baby....

 And because I get the giggles over the most silliest of silly.  I don't own a pair of "ankle socks"- Or whatever work with these boots...I tried to roll down a pair of Bill's.  And to say I didn't almost pee myself, and laugh that ugly laugh for too long over this...well, I did.  Just looking at this picture.  Freak. 

You guys....have you ever laughed hard at something so silly?

And this. 

Shelly sent this to me, and I thought.....yes.  

Laughter, and love.  Good for my soul.

And to my friends in the midst of the storms in life.  Remember.....

"This too shall pass"-

And it might just be shark week. 

Love and Light,

This Mama Lisa

ps. Kris is doing great.  Had a great time, and probably glad he's back because he had 20 missed calls from his mom.  

She's crazy like that. 

Love.   

It's all just love, baby. 

Learning To Fly----- Day Ninety....

I have a prescription in my binder.  My Mama Warrior Binder.  The one I carry around, and have since Day 1 of transplant.  In that binder carries important documents.  Summary sheets showing inclinations and declination.  This binder carries a prescription recently offered to my son. For depression.

Before he was discharged last week I had a long conversation with his PA.  (Physician Assistant)-She was on his side. She knew his outdoors ways.  Ants in his pants, and always out on the water. To be slammed down.  Hard. She's one that I have felt from day one is simply kick ass, and thee most important element in this journey.  She's fist bumped him from the very day we met her, and always cracked jokes about his tattoos. Never passing judgement, even when at times he had what I swore was truth serum flowing through his IV.  If I could share with you what he shared with medical/clerical teams, you'd pee your pants.  I almost shit mine. Several times.

We arrived home on Sunday evening...and I kind of felt like a bird landing on the edge of a nest. 

He wasn't home.  I took the time to unpack my bags, and admire a super clean house- thank you Jen- I've always said, it's the little things.  And to me, returning to a clean house goes down as actually a big thing. 

Jen dropped him off, and the discussion of food began. Something that he is obsessed with. 

Food.

Soon, he'd "mention" to me about his "plans" to head to San Diego with his buddy to do some photography.  

Leaving Monday after appointments...and on and on he went. 

I stayed quiet. 

He shared more.

I stayed quiet. 

Monday morning we'd begin our normal routine.  He'd start in again about his trip. 

I would deny approval.  Soon, sharing how I really felt.

He'd argue back.

Final decision would be "let's ask your doctor"-

As we made our path up to City Of Hope, he went on and on about how good he felt. 

I could see it in his face.  Most certainly, could see it in his appetite, and demeanor.

Something you can't describe unless you've taken this journey.  Their demeanor.  It speaks volumes.

He weighed 120 lbs a month ago.  Walking with assistance 1 month ago.  So weak!

First stop, labs.

Second stop, doc.

She was waiting for us.  She's always so kind and loving when she sees him. 

Hugs, and warm loving greetings to us both.

Her first words are "you look so good Kristopher"-

He always seems a tad bit nervous. To me, he does. 

I guess you just know your kid.  

Not to mention, I told him he'd have to get her permission for any day trips. 

Any trips, for that matter. 

He'd agree.

He began to ask her about San Diego.  Photographing with some friends.  On a boat.

In the ocean.  Not close to home. 

I sat and listened.  Making sure however he planned to ice it, would be re-iced with my icing.

The nag. 

She agreed, but only if he stayed out of the sun.  

The boat.  The ocean.  The sun.

She went on and on about how he needs to get on with his life.  How getting out and living a normal life is what he needs.  

I began to ask what the whole 100 days thing means. 

Why is there so much pressure on us for protection during these days...etc.

Her reply was it's most vital for meds and rejection.  Watching his liver.  Heart. Lungs, gut and eyes.

That he's at the level now, that is still delicate.  A very new immune system. Like a newborn baby.

Newborns don't eat uncooked food, and we certainly don't expose them to things that would compromise them.

But....she said, he needs to get back into the rhythm of life.  To learn to get through the next hundreds of hundreds of days.  

Just to keep an eye on his "body's fuel system"-

Most important, to be aware.

We went over his counts, his amazing new weight gain.  His med sheet, which still continues to blow me away.  Discontinuing two, adding two. One being, fish oil.  The fat that is created due to anti-rejection meds causing concern.  And to me, keeping natural fish oil in the game, is most welcome.

A cute part of the story, is his doctor followed my suggestion of starting his oral chemo at 50mg. versus the 100mg.  That switch will hopefully allow his tastebuds to gradually do their thing.  We all know what will happen.  

She asked how my weekend away was...and just how proud she is of Kris.  She almost pinches his cheeks. 

There's a glow in the room.  Doctors know this fight.  Not quite a victory.  But the fight.

It's almost as though they are the coach in the boxing ring.  Wiping the cheeks.  Pumping them up. 

Encouraging, and pushing. At this point, encouraging to get out and on with life. 

Then there's Mom.

This road has been the hardest thing I've ever done. I am still scared.  I wish I could say I don't think bad things will happen.  I wish I could say he's healed and cured.  I wish I could protect him from viruses, and most important infection. I wish I could hover over him and make the bad things stay away.  

Truth is....I can't.

I can just pray that he stays safe.  That his doctors give boundaries that allow him to stay healthy.

And that I don't have to walk into the pharmacy with yet another prescription.

Only this one being- Zyprexa for depression.  

Let's just do this organically.  And live life to the fullest.  While he can.  

Day 90.

First text. 7:30am 

San Diego.  With friends.  Taking pictures of what he does best. Fishing poles, and fishing friends.

My reply to him- "I love you so much honey"

Stay smart.

Counts---------

WBC 13.2

RBC 3.25

Platelets 131

Here's a peek at what I look at every week, twice a week.  Changing every Monday and Thursday-

Highlights in green, are what he takes daily.  Twice daily.

I wish you all a sweet day. 

And I thank you for the love and support.....

Your friendship, love and support is what keeps my heart from breaking into a million pieces....

To my family, I thank you. 

And Kyoko, thank you.  For this today.  Thank you.  

Happy Tuesday! 

This Mama Lisa

The day before diagnosis-

Flu like symptoms. August 19th-2015

Oh Lord .....have mercy on my baby....August 20th, 2015

 Mama and Bird on day of discharge, post transplant.  February 4th 2016

When you see it.  Stapled up there by his parents April 7th 2016, while mama sipped one....two
 super stiff drink(s).  FOX'S ON THE COLORADO RIVER- PARKER ARIZONA