Garrett and Grant

I keep forgetting to post this picture.  

Russ secretly snapped this photo of Grant performing his priesthood duties at church a couple of Sundays ago.

And it cracks me up every time I look at it and I have looked at it like 100 times.

It's so hard being the "program passer outer".

Old ladies talk to you

Old men want to shake your hand

And you have to open the door for all of the disruptive people

It's tough work and can be exhausting.

I really love this kid.

He said the cutest thing the other night when every one was over for Father's Day.

We were watching the Golf Tournament

And all of the sudden all the men started yelling

"He lost a stroke, he lost a stroke."

And Grant, very quietly and under his breath said...

"I wish Mom would lose a stroke"

Like I said, I love this kid

Additionally, we know that Kori would want everyone to know that Garrett has hit TWO home runs in the last two weeks and that he was selected to the American Legion All Tournament Team this past weekend.  He's such a great kid.

 Russ was able to go to therapy with Kori today for a little while.

It was good for him to see the things that he can do to not only increase her strength

but encourage and inspire her.

 I think in this photo here, he's telling that guy that he caught a fish "this big"

 And I love how Kori and Russ coordinated their outfits

so they could be twinners at therapy

And then mom snapped some photos at Garrett's game.

It was only about 95 degrees tonight with some lightning and occasional thunder.

And some positive news.

The speech therapist will only need to see Kori once a week now because she has either met or exceeded what is required for her to show that she is "with it".

This is great news for Kori

She hates speech therapy

Just clicking off the milestones one by one.

Miriam

Kori is an Exercise Physiologist and the Pulmonary Rehabilitation Team Lead in the Cardiac Rehab Department at the hospital.  Her job is to help the patients on their recovery journey from Heart Surgeries.  She gets them up and exercising in as little as 24 hours following their procedures.  It is not easy work.  Patients are cranky.  And emotional.  And hurting.  She has been thrown up on, pooped on, grabbed inappropriately, yelled at, screamed at, cussed at.  She has to use incredible amounts of strength to get them up and out of their beds.  Her back hurts.  Her muscles are sore.  And yet she goes in and gets them up and gets them walking.  Why?  Because she knows that is what is best for their health.  And they don't want to do it.  But, she makes them do it anyway.

  This is Miriam and her husband Jared.  This picture was taken in March of this year.  Miriam is a nurse at Dixie Regional Medical Center in the Cardio Vascular Unit.   In March of 2014,  she was awaiting Open Heart Surgery.  It was a scary and unsure time for her, I am sure.  Miriam worked with Kori.  And Kori was very helpful to her in preparation for surgery.  She pepped her up and told her that she would be there when it was over.

Miriam's surgery went well.  And Kori was there, just like she promised making her get up and walk.  Miriam said  

"Kori was my best friend from Cardiac Rehab.  She helped me get my walks in and helped me schedule all my appointments for Cardiac Rehab afterward.  She was my own personal cheerleader.  I looked forward to going when Kori was there.  Because she made my day by making me feel special."

This picture was taken March 6, 2014.

"This is not the best picture of me"  She adds. 

"But it is my favorite of Kori.  She promised she would be the one to walk with me from ICU to CVU.  And I made her promise she would make me walk the whole way.  She cheered me on all through recovery.  She was more than a co-worker, she really cared about me and is a true friend."

I asked if I could put this on the blog.

She said, "Sure anything to support Kori.  I know how hot I look.  But I would be excited and honored to show my love for your sister."

Then she added

"There were a few days after I was discharged from the hospital and was doing out-patient Cardiac Rehab.  And I would text Kori if I had issues and there were days that the very LAST thing I wanted to do was go to work out, be strapped to a heart monitor and get sore.  Kori would text me and remind me how much it helped to be there.  And all the reasons I needed to go.  And she wouldn't let me make excuses not to show up.  Thanks to Kori and everybody in Cardiac Rehab, I went.  I worked out and I survived.  I may not have been smiling the whole time.  But, I always knew it was where I needed to be.  Working in medical is what we do.  It's second nature that we push for others to do everything they need to do to get better.  However, we are the worst patients.  We are super hard on ourselves and we don't want to do the things we ask our patients to do."

Remember this Kor?

Look at all her wires and monitors

Remember she probably felt vulnerable

and scared

and super crappy.

But, you got her through it and she loves you for it.

And so do we.

Thank you so much, Miriam for sharing your story with us.  

This means so much to our family.

Hey Pedalz.........

Today clicks off the fourth day of radiation and chemotherapy.  

26 more days of radiation

38 more days of chemotherapy

But, who's counting?

Oh....  wait.....  EVERYBODY

So far....  so good

No nausea.

She is a little more tired than usual, but it is hard to say if that is a result of the treatment or if it's a result of increased therapeutic work.  

When Kori was in Houston, she worked out on the bike.

And she loved it.

She told me how it was her workout of choice.

But I don't think she's been on the bike here yet...

Until yesterday.

Luke put her on the NuStep

and she found her groove and stayed in the gym 15 minutes longer than her normal time.

Mom says she usually can't get out of therapy fast enough.

But, yesterday she stayed and enjoyed her bike ride.

 I don't know why I am so in love with her legs, but I am.

Today she walked quite a bit on her own with very little help.

She also met with a new doctor, Dr. Vroenen.  She is an Acute Rehab Physician. 

And she works with Dr. Fox.

She met with Mom, Dad and Kori for an hour and a half trying to get a handle on exactly what Kori needs physically and emotionally to get through this.

She assured Kori that she would give her whatever support she needed.

I think we all could use a Dr. Vroenen.

Maybe she could get me some stuff that I need too

Because I can't get a grip.

And I am not even in the trenches.

Garrett has a baseball tournament this weekend.  His first game was tonight at DSU.  It was only 110 degrees in St. George today so we've been looking for hats for Kori because there will be several games over the next few days (and next weekend in Park City).  

And, of course, she will be there cheering Garrett and his team on.

That's a cute smile for sure.

She is starting to look like herself more and more everyday.

PS....  Pedalz was Kori's camp name.

All of the 16 year old girls in our stake were given camp names and they were

bestowed upon us based on our personality traits (or so they said).

Kori was Pedalz because she was BIG TIME into mountain biking...

I thought it might be fun, if you used to be in our Corona California Stake to comment your camp name and remind us why you were named that.   Tag someone who's comment you don't see....  Let's see how many Corona Stake Girls we can hear from.

I, Kaci, was Krinkles because I scrunch up my face when I smile and when I tell animated stories.

And NOW that I am an old lady my Krinkles have become Wrinkles.

So,  so  sad.

A picture is worth a thousand words

Physical Therapy Sucks

and that is all....

Let the treatments begin

Monday June 22, 2015

Radiation began.

The session lasted 10 minutes

and I think everything went smoothly

But Mom said Kori was very.... VERY nervous

and anxious

and teary...

and SCARED

 I can't even imagine the thoughts running through her head

I would think it was something like this....

"...I don't want to do this

I know I have to because I can't get better unless I do this

but I don't want to do this.

And I am lucky that I get the chance to fight.

And I am lucky that I have a good prognosis

and that my doctors are so hopeful and positive.

And so I will fight...  for my kids

and for Russ

But man, I really don't want to do this..."

I asked Mom when it was over if it was

something that would get easier as she got used to it 

and not so scary with each passing day

And she said "Yes"

And so until there is another update,

we will go with this one...

First day down!

Father's Day

Happy Father's Day to all the Fathers in our lives

 We sure are lucky to have our dad.

He is so cute.

He is so fabulous.

Our parents will be able to say at the end of their lives that there was 

NOT ONE DAY

that went by that they didn't do something for one of their children or grandchildren. 

They are truly the greatest parents in the world.

We had a fun day today celebrating...

This cute girl's 12th birthday...

 And good husbands too...

 I took this picture because I think Kori's legs look cute in

every single picture.  She was so happy to announce that

she had recently shaved them and Russ added that he had exfoliated them twice

We love our cute cousins...

And we finished off the day with a walk around the neighborhood.

We had a really good time tonight.  We laughed a lot and told some really funny stories.

And we also decided that we are going to "keep it real"  in our family when we are together.

When we are with family members, we get to say whatever we want, and feel however we want to feel and we don't have to apologize or pretend that this doesn't SUCK and we don't have to put on a show or a happy face.  If we feel happy, great, we can be happy....  but the same is true if we feel lousy.

And tears are allowed and so is swearing.  Additionally, the onlookers aren't allowed to squash the crap parade with a bunch of positive thoughts...  our responses, for now are going to be "you're right to feel the way you feel and I feel exactly the same way about it too."

We caught ourselves several times tonight 'going positive'.  It was kind of funny...

Mom said 

"in six months, all of these frustrating things will be a blur and you will hardly remember how it was".  

And Kori goes...  

"you keep saying that.... six months....  and it's ruining my goal of TWO MONTHS."  

We laughed so many times at her expense tonight.  

Don't feel too sad for her, she was the instigator of most of the poking.  

She has "left side distraction disorder" (this isn't the real term, but I can't remember the technical name of it right now)

and what that means is that she kind of misses all of the events happening on her left side.  

Essentially she only sees half of the room and hears half of the conversations and so it is really easy for her to lose interest.  

So sadly, right in the middle of a conversation, she totally zones out.  And focuses on other events far less important than the awesome story that I was telling her.

....................................................

...............Anyway..............

Mom says in therapy the therapist will say 

"focus on your hand.... try and make it move"

but she looses interest in her hand really fast

and she starts watching what the guy across the room is doing 

and Mom says she wants to yell

"KORI..... pay attention"

And then Kori said "my hand IS NOT GOING TO MOVE!  It's the same as him putting my cel phone in front of me and telling me to try and make it move."

I said.... "you never know.... before this is all over, you might be able to move stuff with your mind."

And she goes.... "yeah, I'll be able to sweep my kitchen floor by simply thinking about it."

We have a big week ahead of us.  

And by us, I really mean Kori...  Kori has a big week ahead of her

and we are the onlookers

and so our job will be to be supportive of her feelings

no matter what they are

BRING IT!!!!

Meds.....and hard working therapists??????

I am so happy to report that last night June 17, 2015 was the first night in 10 weeks that Kori has had a full night's rest.  The medicine prescribed to help with her hypersensitivity worked like magic.  And she was able to sleep all night long with no nerve pain.  Mom reported that she was so different today....  Upbeat...  Happy and very nearly back to her old self.  This is the greatest news.

Meanwhile...

I have decided that I am in the wrong profession. 

I am trying to figure out how I have gone so astray.

I wake up every morning and work my tail off 

and most of the day, I really am working,

 but sometimes I feel lazy and

I have to work hard appearing like I am working, which let's be honest,

is harder than actually doing the work.

And my co-workers can't tell the difference between the two..... I am that good.

And I come home at night and I am tired...  exhausted really.

But...

I have decided that I should have gone into Physical Therapy

Take for instance....  this guy here....

Remember Him?

This was him working hard yesterday...

And this was him today

He makes no apologies. 

He doesn't even try to pretend

He's obviously overly confident in his job stability

either that or his boss is out of town

I am not sure.

And then to pour salt in the wounds of the working class,

he has taken his game a step further and 

somehow figured out how to sucker his co-workers to do all of his work for him

while he lounges on the table like so...

And this poor guy is falling for it everyday.

I am just kidding of course.

I know that they are doing great things for her everyday

(Even though here he is so very obviously hiding behind poor Kori playing Angry Birds on his phone)

But really, there is a test to test progress.

They score her on sitting up straight, standing on her own (which she did today) walking unassisted (which she took 10-15 steps today as well), transferring from one seated position to another unassisted.

And when Kori took her first test on her first day, she scored a 3 out of 28

and today she scored an 11.

That is pretty amazing.

These guys are great!

And they are fun to work with too.

We are so appreciative to everyone who is taking such good care of her 

and making her better and stronger everyday.

You-Caring for KoKo

Kori has returned home from her 40 day stay at the MD Anderson Cancer Center in TX. She will begin Chemotherapy and Radiation next week her in St. George. I (Kami) have been asked by several people how they can help. So just a reminder that we have a You-Caring account set up for Kori's medical expenses. Thank you for your continued support, prayers and thoughts.

http://www.youcaring.com/medical-fundraiser/prayers-for-koko/341043

The plan....

First of all....  so sorry for the delay in posting.

I have had some internet issues.

But good things come to those who wait...

Today we got some VERY GREAT news

Kori had her much anticipated MRI.

There was no sign of anything new.

No new growth.

Her brain is moving back into place and as it does,  more things are improving. 

The MRI allows Dr. Tudor, her Oncologist and Dr. Richards, her Radiation Oncologist, to create her treatment plan.

She will begin cancer treatments on Monday.

A funny story:

Kori recalls Dr. Rao telling her that when he 

cut into her brain, he needed to re-enforce it with a metal plate.

She recalls specifically asking him the question of her cut into brain

and she vividly recalls him saying he placed a metal plate in her head.

But the MRI showed no metal plate.

And so she asked Dr. Richards about the metal plate.

How big is it?

Where is it placed?

And poor Dr. Richards

searched and searched the MRI for said plate.

As it turns out

Kori must have dreamed this.  Maybe in the days immediately following her surgery when things weren't quite "real" and, as she puts it, "all a blur."  

Apparently there never was a metal plate.

No wonder she had no problems getting through security at the airport.

 She had a very good day at Rehab today

It kind of blows when you are working your buns off and there is a guy just 

standing there, with his arms folded, doing absolutely nothing.

So...  Kori has a condition and I am sure it has a super awesome medical term attached to it

but the jist of it is....

as a result of the stroke, she has developed hypersensitivity to the left side of her body.

And the effects of hypersensitivity are described like this

Anything that touches her skin triggers her central nervous system to tell her brain that she is feeling intense pain.  So if a drop of cold water falls on her arm,  it feels like her skin is burning like the drop of water is a drop of fire.   Consequently, she can't sleep at all because everywhere her body is touching something (the mattress, the blanket, her clothing) she feels pain.

And naturally this makes her very tired and very cranky and VERY MISERABLE!!

So today she was prescribed some medication to combat this.

We are so excited for her to get some relief.

Until Monday, this could be our prayer for her

Totally wiped out from therapy.

Today is Mom's Birthday

and all she wanted was to have lunch with the three of us.

Kori and Kami got a delicious lunch

and Mom and I got something less delicious.

And I kept swiping from Kami's bowl every time she looked away 

or got up to get more water.

I almost ate half her lunch

 It was fun to get together

I think we should do it once a week now. 

We have so much to say

And so many stories to tell

My dad is up North with Garrett for his baseball tournament

I feel badly that this is kind of a lame birthday for her.

She'll be all alone tonight

Which for an only child, might be delightful.

My observations of Kori today:

She is much more mobile

Her personality is coming back in her face and voice

She is ready for the upcoming events

and

She is TOTALLY addicted to Candy Crush

Weekend Update...

Just like mostly everyone else...  doctors, physical therapists and patients take the weekend off.   This weekend, Kori has spent her time "gearing up" for next week's events.  

Her treatments are scheduled to begin on Tuesday...  that is... if her insurance company cooperates and allows her to have an MRI which the doctors here are in need of in order to begin.  It is hard to play the waiting game.  

She had a visit on Friday from some of our long time friends from Corona.  The Thackers.  It's nice to see old friends.  

And then today her ward made her this amazing quilt

 I cannot believe the outpouring of love and support from

 their friends and ward family.

What a fabulous gift

The Hydes paid a visit to mom and dad tonight

Her smile is looking so great.  Almost like her old one

And then they topped off the weekend with a little walk around the neighborhood.  

It was only 90 degrees...

Quite the eventful day

Today was Mask Making Day.

When one is receiving radiation treatments in the cranium region, one gets fitted for a mask.

Kori explained it like this...

They warm up this meshy material and then gently place it on your face.  And while it has holes in it so you can breathe, it still makes you feel a bit claustrophobic.  The warm sensation on your face is also a very strange feeling.   

 Almost immediately after the mask is placed, the doctors begin fanning.

The fanning cools the mask quickly and allows it to harden.  

The fanning also probably helps with breathing as well.

 The way I understand it is...  now the doctors will know exactly where to place the radiation beams (if they are even called beams,  I am totally making all of this up to try and sound smart...I willingly admit it...)  

...Please if you don't mind, I beg your indulgence for a moment while I digress to tell a quick story that pertains to this particular subject...

Today at therapy,  one of Kori's therapists said

"I am so famous!!  People literally stop me on the street now to tell me that they saw me on 'The Blog'.  So many people are reading it and everybody knows me now"

And Kori goes....  "Well, you should know that only about half that stuff on there is true."

Implying that I make stuff up?  

Is that what you are saying?

Fine!  I suppose that is true.
Sigh

But, is it really made up, if it seems like it's the total truth in your own mind?

Or if it's written with love?

50% true is like an F-

And the reality in my rose colored world is it's more like 80/20

And that's pretty good, given the quality of details I receive

This blogging isn't as easy as it looks, friends.

And I am almost not bitter at all.

Like only 50%

Digression Over...

 This is our beloved, Dr. Richards

Today, he reiterated what Dr. Rao said, that Kori's cancer is the most responsive to treatment. 

And mom started crying.

She thought she'd heard Dr. Rao say that, but then over time, she couldn't really remember if she'd heard that or if she had just made that up hoping that could be true.

But, Dr. Richards said it again today and it was just as lovely to hear the second time as the first. 

I also want to point out how symmetrical her smile is in this picture.  That is a wonderful thing to see.

 This is Nurse, Jason.  Jason was also her nurse when she was first diagnosed and was in ICU.

And he took really good care of her today

Notice the not so nice looking blue tube that she has to go into
My feet get sweaty just looking at it
(of course, I get claustrophobic in my 1/2 bath, so I would have a fit in that thing)

Mom says she gets the royal treatment at Gamma West

And everyone is SOOOOOOO  nice to her, like she is a celebrity.

Additionally, she is getting really close to walking on her own and mom says that today more than any other day so far her personality is returning to her face and voice. 

Later this evening, Garrett had a double header at Snow Canyon High School.

Look at the posture...  Richard in OT would be so proud.

 Then she and Russ danced a little bit

 I love this picture

 So a kind of sad thing happened at the game...

We had just arrived and Kori was laying on this blanket.

And we were all a buzz, saying hi to everyone and setting up our chairs.

And I noticed Kori was rolling around and fidgeting and I thought she was just trying to get comfortable.  And then all of the sudden my dad jumps up and says...

"Honey is your arm stuck underneath you?"

And Kori says  "Yes, I've been trying to roll my body off of it for a while now."

And this is just like her....   to quietly suffer....  while the rest of us are all oblivious.  

It really broke my heart.

Thank goodness Dad was paying attention to her, poor girl.

We also have started planning our annual Fourth of July 

H.E.L.L Trip

(for those who don't know, the first letters of our last names Hyde, Ellsworth, Lund and Little spell H.E.L.L.)

So anytime we do a big family to-do we call it a HELL thing.
~And sadly, some of them end up being a little "hellish"~

We are all planning on Kori feeling well enough to go

We are just rolling forward like it's going to happen.

I said to Russ.  What if she doesn't feel well in 3 weeks?

He said "We're going even if we have to leave Kori at home."

Yeah Right!!