Casablanca

Oh the joys of finally having a daughter old

enough to babysit!!!

Holland stayed with Kean while Byron and I went

to Greer's Orchestra Concert.

It was one of those rare nights out together

and it was wonderful!

 Meanwhile, I have to share with you all the love

Kean's been getting lately.

Super cool Maria Proudfoot (from my church congregation)

invited the Keanut-man over to ride her horse Buddy.

 He was so very happy to be outside and on another horse.

This kid likes anything that goes fast-- so Maria and I

got our exercise trotting along side Buddy and Kean.

Kean just giggled.

 Then if that wasn't enough, Alex Hill from our congregation

came over to hang with the little man.

He took him for a long four wheeler ride around the yard...

 and then taught him the fine art of racing cars.

It was so funny.

Kean's car was painfully slower than Alex's.

So what did Kean do? 

Take his slow car and give it to Alex.

Don't ever tell me my boy isn't smart!

To quote a certain movie- "I think this is the beginning of a beautiful friendship!

Watch Out Sampson

Gotta love those school themed days.

Today was "Crazy Hair Day"

and our creative Greer practiced some styles

last night...

 before coming up with the perfect "do's"

for Reese

 and herself.

Believe it or not, both girls have empty water bottles hidden

in their locks to help hold their hair up and out.

 Since Holland had to give a big presentation in class today,

she opted for a more conservative look.

And then there is Kean... he has crazy hair day

about every day!

A Diva Is Born

My middle daughter, Greer sang

a duet (with several solo parts)

in front of our entire church 

congregation on Sunday.

A.  I don't know where she gets her talent.

B.  I don't know where she gets her guts.

(I, personally, would have to be 

tranquilized to sing in front of a crowd).

But back to her.

She was magnificent.

Sang like an angel.

And today, she got the sweetest

thank you card in the mail

from a lady in our church.

Greer was thrilled.

So much so, she has vowed

to save the card forever-- 

as her very first piece of

"fan mail".

Love it.

Patient Zero

Interesting day.

Kean had his little therapy school today and when we showed

up, his Speech therapist informed us it had been a year and

today was the day for his evaluation.

Could they have picked a worse day?

He's hopped up on Steroids-- Steroids that make

him angry, emotional and mostly non-cooperative.

This face kinda captures his state for most of the week he's on 'roids.

 I told her to use the fact that he will eat the entire contents of

a refrigerator to her benefit for snack time.

And she did!  In between tanking down two containers of applesauce,

a bag of grapes, a banana and goldfish crackers, he cooperated and made

it through his eval.

So, he's on the level of a two year old-- which isn't great

when you consider that he's five.  But as we decided, after

all he's been through, that is pretty darn good.

We've seen him blossom lately-- with his walking and his talking.

He'll catch up, he'll catch up!

 The other interesting thing today is Kean's nightly Chemotherapy 

medicine was changed.

Well, the recipe anyway.

We've been waiting for months for the FDA to approve a

new mix of Mercaptupurine or 6MP for short.

Up until today, I had to trek to the hospital every other Monday

to pick up his 6MP.

This new recipe is more stable and doesn't have to be

compounded (made into a liquid).

Kean is the very first patient in the state of Idaho

to be on the new recipe.

Plus, and here's the good part-- it will last a whopping

six weeks!

The bad part is the price.

 Kinda scary when you think about how many different drugs he takes

in the span of a month.

Thankfully, it is covered by insurance-- but I find the 

prices all so crazy.

Really now, do the pharmaceutical companies have to make

that much???

A Spooky Night

We had one of our favorite nights of the year--

a Halloween party at the Zoo with our

Camp Rainbow Gold family.

The guy with the "fro" is Jason-- one of the heads

of CRG and a guy we refer to as the Pied Piper.

Everyone, and I mean everyone LOVES this guy!

 It is also one of the few nights we feel comfortable

taking Kean out for a night on the town-- since he's around

families in the same boat as us (all germ-a-phobes).

 Not only do they feed us, have tons of treats and carnival games

but they have these animal encounters set up for the kids.

Kean got a huge, huge kick out of feeding Julius, the giraffe.

 Honestly, I thought Greer had one of the best costumes of the night,

she had her heart set on being Maleficent and even made

her own head piece.  Don't know where she gets

that creativity!

 The only other thing Kean wanted to do was ride

the "horsey".

We closed the Merry-go-round down-- riding

it five times.

Hey, we do what we can to make that boy happy.

 The night ended with a Neon Parade down the main

drag of the Zoo.

Our little Monarch butterfly dazzled.

Hot and Cold

As a mom, it sure is painful to watch your child in misery.

That ol' wicked Chemo is so dang cruel.

He was lukewarm for Physical Therapy this morning.

We tried to get him to walk around some inside

since it was raining outside.

For Maureen and Occupational Therapy, he had moments

of cooperation (and joy).

 She brought this little game where he had to flip a lever

and it made a little disc fly into a box.

Boy, oh boy, did he like that one.

Just take a look.

Too bad that was the high point of the day for him.

It has been one of those whine and hug, whine and hug 

kind of days.

But I'm looking on the bright side.

At least we got through the day without any vomiting.

Trust me, that's a plus.

And you know what?

His hugs are the best.

The best!

Music With a Bit of Torture Thrown In

If you were sitting outside our house today...

you'd likely think our boy was being water boarded.

Numbing up his port for Chemo took three of us.

Reese is behind me, reaching around and holding his legs

(so he can't kick me).

This picture does not show him screaming.

 And yet we get to the hospital and

he is all smiles and Mister Charm.

Calene and Chelsea Borup were our double dates

for Chemo today.

 Kean's counts are still super low.

He's at 710-- and they want him between 700 and 1200.

So we dodged any changes to his protocol.

Just barely.

What was crazy is we did talk about his end date.

Remember, we have less than a year left of Chemo.

And once that is over, we still have to go to the hospital monthly

for a year, then every three months for the next four years.

So our treks down to St. Luke's won't be ending for quite some time.

However, we'll gladly take monthly blood and other tests

over constant chemo!!!

Today, we lucked out and got to hang with the lovely

Miss Irene- the music therapist.

 My, oh, my did Kean have fun.

He LOVES everything about music...

 and seemed to be quite taken with Irene.

 I think I took about a thousand pictures

as he mugged for her and she played for him

while we waited on his Chemo.

I think we need to get this boy some guitar lessons.

Take a gander.

Spilled Guts

The costumes are ready

and the excitement has been ramped up to oh, about 180.

Halloween can't come soon enough for three girls.

 Kean is quite another story.

He took his little pumpkin tonight and rolled it over and over again

like a ball.

Guess it does kind of look like one.

Our friend and neighbor, Trent came over to help with the carving

(really, to keep Reese away from the knife-- don't need another

sliced wrist).

 Ta daa... the finished pieces.

Greer and Holland have guts spilling out of the mouths

of their pumpkins.

Guess they've moved out of the sweet, princess stage.

Dog Treats for Dessert

Lucky us.

We got to go over to Ron and Elly Moomey's house for Sunday dinner.

Elly is an incredible cook!

And she did not disappoint.

Desert even included the traditional whipped cream in the ol' mouth trick.

 After dinner we sat outside and let Kean throw the ball

to Pete.

I can't quite tell who gets more excited-- the dog or the boy!

Both should sleep quite well tonight.

The other highlight of the night?

Kean loves giving dog treats to Pete.

By the way, he loves it so much... he popped one of the

dog treats into his mouth!

Tasty.

The Do Gooders?

I can't help but love those girls.

Greer, Reese and their friend Jaymie sneaked down

to our neighbor- Grandpa Bodily's to surprise him

and rake up all his leaves.

They filled eight garbage bags before they were caught in the act!

 So what did they do?

They brought all eight of those bags up to our clean lawn,

dumped 'em out and dove on in.

Talk about pure glee.

Guess one of these days we know who will be

raking another yard.

Cruella DeVille

Yep, we are still in business.

Boy Wonder got a good work out this morning

chasing Grandpa Bodily on the lawn mower.

We are all so excited he is walking again.

PHEW!!!

And in honor of Throw Back Thursday...

here's one of our eldest when she was just a wee little one.

Holland had dark hair first.. before the sunshine came in.

We used to call her Cruella-- since she never lost the dark

just grew blond roots.

I actually got asked a few times if I colored her hair.

Yeah, right.

Back in the Saddle!

Grrreeeat news!

We went down to the neighbor- Grandpa Bodily's for 

a little lawn mower therapy.

First, he had to be patient while Grandpa Bodily

aired up the ol' tires.

If you've followed this blog, you'll know that after a hard fall a few weeks ago,

the Keanut man has refused to do much walking.

Well, today, he took off and walked and walked.

You should have seen us all cheering him on.

I'm sure if anyone happened to drive by, they'd think

we were all lunatics.

Happy lunatics with big grins on our faces! 

Naughty, Naughty

Another day.

Another doctor's appointment.

 Today we saw Kean's Pediatrician... a doctor we really adore.

Everything looks good... except for a faucet for a nose and 

an ear we hope won't turn into an ear ache.

So overall, a good day.

The night?

Not so much.

Holland and I had a mother/daughter church

activity.  We just got home.

How was Kean you ask?

Hmmm.... he tossed his dinner plate against the

wall when he was done (instead of pushing it away).

And he climbed up on the counter when Byron and the girls

weren't looking... and pulled down all the cup cakes

Greer had just made.

Let's just say, he wasn't winning any 

popularity contests tonight.

Pill.

Some Answers?

Well, we finally saw the specialist today-- the Endocrinologist.

Dr. Flynn was extremely thorough-- we not only talked extensively

about his episodes that mimic Hypoglycemic seizures but also discussed

Kean's entire medical history.  And as you can guess, that

took forever.

 In a nutshell, he thinks my theory is probably right on--

that the Chemo he takes fasting each night is too hard on his little

body and that his liver probably doesn't bank enough sugar (?) to

get him through some nights.

He's gonna run a bunch of tests with Kean's blood when we have Chemo

next week.  He wants us to try adding a prescription non-refined corn starch

into his meals -- that will take longer for his body to break down.

If that doesn't work, our least resort will be a night time feeding.

One other interesting development came out of today's 

appointment.  Kean has been on Thyroid medicine 

since he was an infant.  Dr. Flynn told me today, that

his Thyroid medicine has basically been worthless.

Since Kean can't swallow pills, he's been taking a compounded

liquid.  Dr. Flynn said that it is impossible to get Thyroid

suspension stabilized and that Kean likely has only been getting

a whopping 25 percent of the med.

I'm thinking this could be good news.  Regular tests

show his levels have been fine-- so if he's not getting the

right amount of medicine, I'm hoping maybe we can drop

this medicine from our long list.

Wouldn't that be great?

Dodge Ball

Phew.

We dodged the bullet big time this morning.

Kean had another one of "those" episodes.

He had a very rough night, woke up completely lethargic,

 wouldn't eat or drink and whimpering.

Plus, get this, his temperature was a low 96.2.

I have to admit, I was totally confused

in that he ate a great dinner last night

(it seems to always happen after he eats poorly).

He wouldn't drink much yesterday though... so maybe

that's the missing puzzle piece.

Either way, we finally see a specialist about

this on Monday (an Endocrinologist).

Kean's cancer doc had me watch him for a while

instead of rushing him to the E.R.

Good thing.  About 40 minutes after getting him to drink

some Orange Juice, he perked right up.

Last way I want to spend my Saturday is in the E.R.

Instead, it was a low key, snuggle and watch

movies kind of day.

Yes, we watched Tangled

and then tonight it was Bolt.

He totally gets into the motorcycle

chase scene at the beginning of the movie.

I know-- shocking.

A Detour

I sure wonder what people think when they see us

doing "lawn mower therapy".

Today especially.

Picture Grandpa Bodily with Kean on board...

and Greer and Reese on roller blades doing their best

to keep up with the boys.

 Kean, by the way, has done a little back tracking.

He fell hard last week coming off our grass onto our patio

and immediately started crying.

Since then, he has not wanted to walk.

We don't think he's hurt-- just lost his confidence.

You can see, he'll take a step or two and then he's done.

It's kind of frustrating... but we'll get him back on track.

And while yesterday Kean had his big eye doctor appointment,

since the girls were out of school today-- it was there turn.

Get this, Holland's eyes have stayed the same (blind as a bat),

Greer's eyes actually improved slightly?!?!?

And Reese is coming in with 20/20.

And finally, while Kean won't walk--

 he will still gladly ride.

Thanks Motorcycle Jeff for a beautiful ride on a beautiful evening.