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Wow, did we have a good day at the hospital.

And how fun was that... to get to be able to say that!

Jen was waiting for Kean... her job is to play with the kiddos who have Cancer.

You can tell by his smile that he loves Jen and what a sweet gig she has.

While we were getting Kean's blood draws, we were told we had a visitor...

meet Brooke Linville.  She is a friend of a friend's and after hearing and reading

about Kean asked to see us. 

 She told us the most touching story.  She turned thirty recently and wanted

to do something significant instead of just partying.

So she set out to do 30 acts of kindness.  She created a facebook page

and asked for cards of hope to be sent to Kean.

She also had her son's pre-school class make get well cards for our boy.

These are just a few of the nearly 20 cards she brought-- all so cute and so full of love.

We then met with Dr. Meeker, who told us he just wished all

of their Down syndrome patients could do as well as Kean.

He truly has been amazing in how well he's done.

I completely attribute that to all of the prayers, love and support he has been given.

His counts have plummeted to 330 something.

But he's hanging tough for now.

He did get the first of four consecutive days of Arac (pronounced Air-uh-see).

This one is supposed to kick him pretty hard but takes a couple of weeks.

This will be his second week on the stuff.

But check out how kicked back and comfy he was in the Chemo suite

today waiting to be hooked up.

We put on the movie Cars and I think we have found a new favorite.

Elly was our Chemo date today.

We, of course stopped and hit the Mexican food drive through...

and tried to stuff him full before he follows suit and

loses his appetite from the Chemo for the next several days.

Our little rock star continues to rock.

Almost Normal

Today was one of those days if you didn't see some bald little guy sitting in our midst, you'd

think all was just fine.

And it pretty much was.

It was Byron's turn to stay home with Keanut and my turn to take the girls to church.

My parents have been in Vegas for the past week and a half, they drove home today

and joined us for dinner.

After they left, we made caramel popcorn and watched a movie together as a family.

I have no earthly idea why Kean is making such a crazy face on the couch...

But it was this perfectly relaxing evening.

Tomorrow, after the girls head to school, Kean and I will head

down to our old stomping grounds-- the hospital.

He's scheduled for more Chemo tomorrow.

Poor guy.  He's been feeling great the last few days

and finally has his appetite back-- just in time to get hit again tomorrow.

 

Play Day

I love days like today.
Greer had two friends over to play in the snow, Holland went to
another friends' house and Reese was invited to play with her buddy Morgan.

It may be cold outside but snow is just plain fun.

Having grown up in Vegas where snow is quite rare, there is something magical about the white stuff. 

 That is, as long as you don't have to drive in the stuff.

Kean seems to be feeling much, much better today.  He ate better,

seemed happier and had more energy.

Kean hates taking his meds.  And I mean, hates.

I think he'd rather have a shot than an oral med.

But once we get them down him, he, for some reason is quite fascinated by the syringes.

Don't you just love our little photo bomber Greer?

My Snow Man

Guess who ventured out into the snow today.

Kean and I walked down to the mailbox.  Well, actually, I walked

and he rode on this cute little sled the neighbors gave him.

I think he was in heaven.... in spite of the hat mom put on him.

I think it is adorable. 

 I'm certain, he thinks it is ridiculous-- but

he was snugly warm and that's what matters right?

I'm happy to report -- no fevers today.

Which translates to no drama with Kean's health.

He's only on one oral Chemo drug right now (until Monday)

and he seemed to have a bit more energy today.

He's still boycotting eating much food, even though he signs he is hungry.

Our "ace in the hole" Holland pulled out all the stops and got him to eat

a lot more tonight than I've been able to get down him.

She has this strategy where she shoves a bite of food in his mouth

and goes wild with the cheering and clapping-- therefore tricking

him into thinking he ate a bite and so he does.

Hey, whatever it takes.



Brrrrrrrr

This is what we woke up to this morning... a virtual white-out.

School was cancelled and the girls couldn't have been more thrilled to stay home.

Our poor cows, however, were not so thrilled.

This picture Byron took gives you an idea of how miserable it was outside for much of the day.



My children, for some reason think we live in Southern California.

This is how Holland dressed much of the day.

I know you are wondering 'where are the parents'?

I'm wondering too.

(She did put on her snow clothes to sled in the afternoon thankfully).

Some of my friends were just crazy enough to visit us on the hill-- Elly, for example.

Actually, she picked up some groceries for me and wins the medal for bestest

friend and bravest driver.

As for Kean, I can see him starting to go down hill.  This darn Chemo is so mean.

He's not eating worth spit, not sleeping worth beans and has had a fever on and off since

last night.  As you know, we have to head into the hospital if he hits a temp of 101.

This morning at 3:30 a.m. (when the wind was blowing like a banshee and the snow was swirling),

Kean's temp was 100.9... just a hair shy of the get in the car and drive to the E.R. thresh hold.

Phew.  I swear I can actually feel the grey hair popping out of my head!

The nurse did come today, give him his last dose of Chemo via his port and take the needle out of his chest.

So now he can have a real bath (it's been since Sunday- ug).

We had a few surprise visitors as well-- our neighbors, the Marczak's, dropped by a

little blue sled to pull Kean around in the snow.  He didn't feel good enough today

to go out in the cold but I'm hoping for tomorrow.  These are the same friends who gave him

the little Harley Davidson big wheel.

And as if we are not spoiled enough, my sweet friend, Peppi dropped in with loaves of

hot, fresh baked bread, and homemade blankets for Reese and myself.



Peppi said she started to make the blanket for Kean but felt strongly she should make it for Reese.

Smart, inspired woman, I tell ya.  Poor little Reese was thrilled and felt so special.

Thanks for being so in tune to a sometimes neglected little girl's needs.

She has snuggled in that blanket all afternoon-- no wonder, she and Greer and Jaymie

tore it up in the snow until dark-- they even convinced Byron to take them on a snowmobile

ride around the property.



Snow days are great fun but I'm hoping to return to normalcy tomorrow and

perhaps even get something done around the house.

Chemo: Our Constant Companion

The boy must be thrilled to be home because every time I put him in

his crib he just giggles.

I'm tempted to do the same each time I get into my own bed.

Home trumps the hospital every time and my bed beats the vinyl couch hands down!

Shawn, the home health nurse (we know her well) came out to the house today

to check on Keanut -- check out his skinny legs.

She is weighing him if you can't tell.



And to teach me how to give him Chemo at home.

Honestly, I don't know how in the world I'd ever do this without another

set of hands to hold him.

Luckily, tomorrow is the last day for Chemo for this week (we start again next week),

so Shawn will be out anyway to de-access his port and help me give him the Chemo.

We are staying on top of the anti-nausea medications so so far the only

side effect I've seen is low energy (and a little fever tonight-- sigh).

One thing I'll give the ol' Chemo... is that thankfully

it does not rob him of his personality.

He is still the sweetest... and still obsessed with motorcycles and tractors.

We Are Outta Here!

I often so snidely refer to the hospital as the Hotel California.

Since it seems once we get in there, something always pops up to keep us from leaving.

But guess what???

Today, we left on time.

Early in fact.

Kean's Ultrasound did show his left testicle has gone back up but it looks

normal sized and the blood flow is fine.

So Dr. Meeker said we will keep an eye on things and if it doesn't descend

he gets to have surgery to "tack it down".

Dr. Meeker said if it is left where it is, he is at a much higher risk for Testicular Cancer.

And heaven knows, we don't need to deal with any more Cancer.

However, they won't do anything until after September 13, 2015-- the date we are

finished with Chemotherapy for his Leukemia.

Yes, you read that right... we finally have an end date and thank heavens for

small miracles-- that date is set in stone-- regardless of whether or not he gets sick

or has horribly low counts and has to delay Chemo.  He is done, fini and over

with Chemo on that date.  (Mark your calendars-- we plan to have one massive

mother of all parties and if you are reading this, you are likely invited)!

Before we checked out today, Kean got to go down to the playroom

and have the run of the room.

He had a grand time pulling out toys and throwing cars.

Other than being tired and not eating well, you'd never know his body

had been firebombed with so much Chemo yesterday and today.



He had another dose today (the ARAC) through his port.

He is scheduled for two more days of that... so we got sent home

with his port still accessed and a home health nurse will be coming to the house

tomorrow to show me how to give him Chemo at home.

He also gets an oral Chemo tonight and nightly for the next two

weeks.  I told you they were throwing everything at this kiddo during

this fourth phase.  And what is really insane is Dr. Meeker

told me since Down's kids are considered so fragile, they back off

on some of the Chemo treatments.  I can't imagine any

body-- Down's or not, having more than what he has

put into his little body.

I hit a Mexican food drive through on the way home for

his enchiladas, rice and beans-- forget milkshakes.

And he gobbled down a decent lunch.

Perhaps it is the hospital food he's grown tired of.

Me too.  If I had an ounce of talent, I'd write an ode

to my bed right about now.  I just got up from a little nap... and can I

just tell you how thankful I am for a soft, warm, quiet bed.

 Sleep was more than a bit elusive last night.