For Granted

For some reason today, I keep thinking about how I used to take the little moments

in life for granted. 

you know, like watching Reese practice jumping rope...

 or Kean steal (and then refuse to give up) Greer's jump rope.

 I've decided to consciously take those 'moments for granted'

and turn them into moments of gratitude.

I am so thankful for three healthy girls who can jump rope almost effortlessly... girls who

are great helpers and Kean's biggest fans.

I am thankful for a husband who tends to be strong when I'm not, who works harder

than anyone I know to support our family so I can stay home and take care of Kean.

I'm thankful for my parents who help us in so many ways I'd never be able to list.

I'm thankful to be surrounded by an army of friends and family - near and far-- whose actions and

written words buoy me up and help convince me that I can keep doing this.

I'm thankful for my faith.  It keeps me going and full of hope.

And I'm thankful in some ways for this world of Cancer we've been thrust into.

Really.

I've learned a lot-- about Cancer and about myself.

We've met some pretty amazing doctors, nurses and folks who work incredibly hard

to make this journey as pleasant as possible. 

Sometimes I feel like I have this huge,

extended family all pulling together to propel us to victory!

Thank you for being part of that family.

As a thank you, I thought maybe you'd enjoy this series of pictures Miss Greer shot tonight...

I think we'll call them

Boy and His Rope.

Working Up A Sweat

Boy, did the boy have a big day today.

Good thing he didn't get Chemo yesterday to knock him to his knees.

He had three, count 'em, three therapy sessions.

First up was at 8:15 this morning and I think I was too sleepy or crazed

getting the girls out the door for school to take any pictures.

He did great with his physical therapist, Andrea... walking the stairs, playing ball etc.

By lunchtime, he was up for Maureen, his Occupational Therapist.

They played games, stacked blocks, put together puzzles, sang songs and

made animal noises (monkey is up on deck for the photo) and climbed the stairs again.

Shortly after she left, Megan, Kean's Speech Therapist came to do her magic.

After making a picture with stickers, they read one of his favorite books.

I thought you'd like a glimpse of what part of his session is like.



By the way, he crashed and crashed hard after Megan left.

Reese came home from school today with a big surprise-- another missing tooth.

So lets, see, she is missing all four of her front teeth and if you look

closely, Miss Proud as a Peacock can make a heart by

pushing her tongue through the opening.

Quite impressive.  I'm quite certain she'll go far in life. 

That heart thing may be short lived. She's got another tooth up

there in front that is pretty loose.

We were quite cruel tonight at dinner... tricking her into saying things

like "Mewwy Kwithmuth" and an assortment of tongue twisters.

Beats going out to a movie.

Countdown to the Counts

I'll get the news out of the way.

Boy Wonder did not make counts.

He was up from last week to 380... but nowhere near the 750 he needs to

start Chemo again.

I have to admit, I wasn't too surprised.

At least we had our great "date" Colleen Riggs to keep us company.

Somehow, she makes trips to get blood draws and meet with the doc... an excuse to party.

Here she is dancing with Keanut in the waiting area.



We met with Dr. Hansen and his fabulous nurse, Heather to

go over the plan for the next few months and to try and understand

why Kean's protocol changed and we will now be entering

Delayed Intensification instead of Maintenance.

We didn't get any real clear answers... other than the brain trust of

Cancer docs feel another round of D.I. can only help boost his "outcome".

 Of course, the minute we got his numbers back, we started shoveling

food down the ol' hatch.  I think that's the worst part of these little trips...

having to have the boy fast.

 The best part of today was running into these two- -

Audrey and her mom, Amy.

They are our friends we met last time we were in the hospital.

Audrey has Down syndrome too and just like Kean, was diagnosed with A.L.L. exactly one

month before her third birthday.

She's been having a pretty rough go of things until recently,

but she seems to be doing better.

It looks like we will both be having our Chemo days on Tuesdays,

so we hope to run in to them quite often.

Evel

Byron has been calling Kean "Evel" all night.

He always does this when Kean dons these particular pajamas.

I'm sure the girls are clueless as to why.

 Tomorrow, bright and early, we head to the hospital for

his big day.  He's scheduled for a Spinal Tap to put Chemo (once again)

into his spine and brain.... if..... his counts are high enough.

Anyone wanting to place a little wager on what his counts will be?

Just kidding.

But it will be a gamble.

I got a call this afternoon from the hospital telling me if Kean's counts

are high enough he won't be starting the much awaited

Maintenance phase.

Evidently, a while back they re-worked the protocols for these Cancer kids

and forgot to tell -- at least this mom.

He will be starting a 56 day phase... one he's gone through before

called Interim Maintenance.  It's not one of the wicked ones

but it's not pleasant either.  There's a couple of Spinal Taps at least that I remember.

Anyway, my friend April called today and asked me why I wasn't

at least a bit ticked over the big switcheroo.

The only way I could think to explain it, was to tell her about a time

I had taken Kean to the Cancer clinic for blood counts and a meeting with the doctor.

Halfway through the appointment, the doctor announced he wanted to admit Kean

to the hospital because there were too  many red flags.

I just shrugged my shoulders and said okay.

My friend Calene, who was with me, told me later, she couldn't believe how flexible I was in

that I didn't even react.

I corrected her.

I'm not flexible.

I'm broken.

No joke.  I don't think I have any extra energy to raise a stink.

It is what it is.

Reunited

We went over to my parents house for our Sunday night get together and

to watch the Super Bowl (which actually turned out to be a good game after the power outage).

We also had a visit by this guy... President Ken Firmage.

He is a pretty important person in our lives.

He used to be the Bishop of our ward - during the

time I was flat on my back in the hospital, pregnant with Kean.

He is now the Stake President (over several wards) for an area we don't even live in.

And yet, he was one of our first friends to come to the hospital when Kean was first diagnosed to give Byron and I

blessings of comfort and hope.

I don't know if you remember, but he is the one who told me

that Kean would not only survive but he would surprise the doctors

with how well he handles the treatment.

Have we seen that come true time and time again or what!!!

I can't tell you how many times Kean's doctors have told me

how well he is doing and how they wish their other Down syndrome kids

would do as well.

So you can see why President Firmage is so special to our family.

And clearly, he is to Kean as well.

Last time Kean saw President Firmage, Kean was in the hospital on high

doses of Morphine.

Tonight when he saw him, he immediately held out his arms and went in for some hugs.



Seems Like Old Times...

Today was as near normal a day as we've had in a long time.

Kean got his high chair turned around and away from the breakfast table

for once again throwing his scrambled eggs at his sister.

He hit Reese square in the arm and lap.

Poor Reese.  She's so used to it, she hardly even reacts anymore.

He doesn't look very remorseful, does he?

 The boy spent quite a bit of time going through a photo album...

he especially puzzled over a picture of himself.

Since it was taken a while ago, when he had a full head of golden hair...

I'm not sure he recognized himself.

 Oh, and we had a clean house for about ten minutes.

Reese decided it was "fort" day.

Welcome to the "guest room" or Kean's crib.

 This is, Reese's wing of the fort. 

I'm pretty sure it got cleaned up.

I cut out for a night on the town with the girls.

Eleven of us went downtown for dinner to celebrate my friend Jeanie's birthday.

Then we headed back to Mary K's house to play crazy games.

I'm telling you... today almost seemed like old times.

It was great.

The Great Outdoors.

Byron just got home from an overnight snowmobile trip to McCall.

It's always such a relief to have him home on so many levels.

Last night, when I went to check on Kean before going to bed,

I found that he had thrown up all over his pillow.

No wonder he didn't want any dinner last night.

I didn't sleep well... worrying that he was getting

sick and I'd be heading to the hospital in the middle of the night

with Byron out of town.

Thankfully, he woke up happy and hungry!

And raring to go.

The girls talked me into taking him down with them to the school bus this morning.

 If you can't tell, he loved it.

He sure is an out door kind of guy.

Please let Spring get here soon.

This being on house arrest is getting old.