The Belle of the Ball

Oh did Kean ever have fun this evening.

The girls got out our massive slip 'n slide; placed it on the hill,

slathered it with dish soap and wet it down.

Kean didn't quite know what to think on his maiden voyage

but by his second go around- he was addicted!

 This is what we call ten seconds of glee.

Holland brought him to me shivering about 45 minutes later.

Nothing like a good, warm bath to make things better.

But alas, when kids showed up from five different families,

Kean (being the social animal that he is) had to go out and say hello.

 I have  mentioned how stubborn he is, right?

Anyway, nothing was gonna hold him back from 

going down that slide again.

Who cares he was clean and in his pajamas.

 A two bath night is a small price to pay for a good night's

work out.

He must've walked up that hill five times on his own.

His therapist, Andrea, will be so proud.

5 Years Gone

This is one of those days I'm so glad is over.

Kean wouldn't wake up this morning

and had another one of those Hypoglycemic episodes

where he is cold, clammy, and near comatose.

My girls have it down to a routine.

Reese grabs Kleenex to hold on his finger

after I take a little blood sample,

Greer grabs the camera to document it for the doctor

and Holland gets a cup of Orange Juice ready.

The girls are truly superstars.  They got their own

breakfasts, made their school lunches and got ready and out

the door while I held Kean, tried to get him to drink and eat

and talked with the doctor.

I can't wait for his Chemo to be over and done with.

His Endocrinologist thinks these episodes will go away too.

They better.

I loose five years of my life each time we go through this.

We are lucky though, after an hour or so, he's totally back

to normal.

He had horse therapy and speech therapy and did quite well.

You'd never even know there had been so much drama in the house!

It seems we must have a magnet for drama.

Kean's horse therapist, Candice (the one who lost

her horse and the baby during birth) started having

some pretty serious pre-term labor signs today.

So guess who got to take her to the hospital this afternoon?  Me!

I was going already for a meeting and so it worked out great.

She saw her doctor two floors up from where I met with Kean's.

So quick update-- all is well with Candice and her baby.

And my meeting?  It was with the Neurophsychologist

that was trying to give Kean an IQ test when he lost 

it and then I lost it a few weeks back in her office.

She gave me the report she is giving to the state

to make sure Kean continues to qualify for therapy.

Anyway, her report was BRILLIANT!

She totally took the state of Idaho to task

for wasting time, money and resources by requiring

a child with Down syndrome who is currently undergoing

treatment for cancer to go through this ridiculous testing!!!

She's my new hero.

It was sure nice to have my exact feelings validated!

Old Baldy

Clearly I messed up by not having Byron stay home from work

to start Kean's day off with an "indoor" motorcycle ride.

Where are his priorities?

Anyway, the boy is not only feeling awful, he's got some

anger issues thanks to those blasted Steroids.

It's already been a long, long day.

Meanwhile, my cell phone is dying a slow death and I've

been clearing off pictures and videos.

This one of "Baldy" sure makes me smile!

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.

Naughty, Naughty

Shortly after Kean was diagnosed with cancer, 

I had other parents tell me that when they were finally finished

with treatment, they have had to deal with a new issue.

That being, a spoiled, acting out, ornery child on their hands.

When you have a kiddo in pain and feeling awful for months,

if not years, it is hard not to spoil them and give in to their every request.

That being said-- and even being forewarned, I find myself being much 

more lenient with Kean than I would have been "if" he had never

been diagnosed.

Heck, let's be honest, we all spoil him and cut him

probably way too much slack because we know he constantly

feels lousy.

And now I'm starting to see some of the fall-out.

He got in "trouble" at his therapy school today.

There are only three kids in his class and evidently

they were taking turns doing a little bowling game.

Kean was sitting next to a little boy and first tried to

pull off his glasses.

Then, he tried pushing him off the bench.

Two of his therapists held Kean's hands to himself and had

him miss two turns bowling.

They said he seemed to feel remorse, understand his actions

and why he was being held still and not allowed to play.

Lately, he's been throwing little tantrums, demanding

bacon, ice cream, cycle rides...

Hard to know how much of it is just typical

toddler tantrums or a foreshadowing of problem behavior

to come.

On the bright side, he is now showing appropriate remorse when

he gets in trouble.

And he hates, hates, hates being put in time out.

I guess the future will let us know if we've gone to over board

in coddling him.

But trust me, it's so hard not to.

Great vs. Grouchy

Got a break from the crazy life today... and headed up

to Bogus Basin Ski Resort with some of my best girlfriends

to decorate for Pam Brown's daughter's wedding. 

We worked our tails off...

covering the ceiling with tiny white lights and lots of tulle

and hanging lights over the bar, on the stairs, balcony and pillars.

My mom took care of the Keanut man-- even doing therapy with

Andrea and Maureen.

I hear he was a rock star for Andrea and my mom

(not so much for Maureen).

When I left the house he kept saying "no Grandpa Bodiily's.

Grandpa's house".  Yes, he's putting words together,

no, it's not quite as clear as I wrote it.  And yes, he

is one opinionated little tiger.  He didn't want to go 

do lawn mower therapy (walking)... he wanted to 

go to my parents house!

But once he got down there-- even though he had heavy 

chemo on Tuesday... he dazzled.

Of course, he's as grouchy as a troll tonight--

but he was great this morning.

The Long Walk

Lawn Mower Therapy is what we call our

daily work outs with our neighbor, Grandpa Bodily.

Kean has graduated to walking up the long, long (inclined) driveway.

 And trust me, it is quite the work out (for both of us).

I let him "fall" regularly and he's getting pretty good

at putting his hands out and catching himself.

 We do this almost every morning.

Bless that sweet Grandpa Bodily.

He sits on his mower and slowly, slowly backs it up

to encourage Kean to slowly, slowly keep moving forward.

 Here's a little snippet of those daily work outs.

Even though Kean is still fighting a cold, we are still

forcing him to walk each day.

Here's the beautiful thing- at the end of each session

Grandpa Bodily drives all around his property, up the street

to ours...

 and drops the boy off right at our back door.

I tell ya, we are surrounded by the best friends, neighbors

and helpers in the world.

Into the Ambulance

Kean had his little therapy school this morning.

They had warned me when I came to pick him up that

there would be an ambulance in the parking lot

for the kids to explore (guess they didn't want me to have heart failure).

It was so cute-- the paramedics let the kids sit on the stretchers

and lifted them up into the ambulance to get a close up look.

As you can see, Kean wasn't all that impressed.

Probably stirred up all kinds of bad memories

of when he was really sick and had to ride in an ambulance for real.

Actually, he had an awful day at therapy.

I guess he cried (sobbed for him mama) the first

part of things until they could distract him with snacks

and get him to settle down.

I think he's still struggling with getting over this cold.

He was supposed to have sedated Chemo/Spinal Tap

tomorrow.  What a blessing it was postponed until next week.

I'd hate to see him even more miserable.

We did have a bright spot today though...

one I completely failed to take any pictures of!

We stopped by Motorcycle Bill and Motorcycle Jeff's 

office after therapy to say hello and take them each a small gift.

Kean was quite confused as to why the boys were there

but did not have their motorcycles with them.

The "this just doesn't make any sense" look on

his face was priceless!

The Flower Boy

My friend Pam Brown has been taking Kean to

his horse therapy on most Fridays--

(this adorable pic is from last week).

 But today she called in sick (has the same gunk

that we've all had- poor soul).

So I got to go.

Kean is getting more and more confident with his horse

riding skills.

We spend half of the session trotting (which

translated means mama is trying her best to keep up).

His new trick today was to take the plastic flowers

that decorate the jumps-- hold them for a second,

then toss them and watch Candice or I play fetch.

 And if I do say so myself, we are both pretty good at playing fetch.

Hercules

I'm so proud of my little guy.

In spite of having heavy Chemo on Tuesday

and in spite of his feet bothering him from the drugs,

he gave us a Herculean effort today for physical therapy.

 He walked up and down Grandpa Bodily's 

drive way... not once but twice.

This follows yesterday when I could hardly

get him to even use his feet!

I guess that just shows us how badly he wanted

to ride with Grandpa Bodily!

 Our sweet girls (and neighbor Jaymie) surprised

us by making dinner tonight and then serving us outside

on the lawn.

 We are pretty spoiled, if I do say so.

Speaking of spoiled, I have to record this (for my shoddy memory).

We've been having some problems with the Chemo Kean takes

nightly.  It has been clumping up.  We spent nearly an hour

yesterday waiting at the hospital to pick up this latest bottle.

Finally, the pharmacist came out and said she wasn't happy

with how it was turning out (it is a complicated process

of breaking the Chemo down from pill form to liquid).

So she was going to have to re-order and start all over again.

Get this, the pharmacist didn't want me to have to drive clear

across town again, so she offered to meet me near my home

on her way home from work.

I have decided there are a lot more good people

in this world than there are bad.

We sure have met some of the kindest.

P-Day

I'm thinking of having some t-shirts made that say "I hate poop"!

If anyone else wants one, let me know.

Kean gets so plugged up from the Chemo that I start laying on the 

Miralax way before he even gets the drugs--

and boy, did it kick in today.

Been one of those wash clothes, sheets, stuffed animals, blankets kinda days.

On the bright side, Caitlyn Swanson is working with Kean this

summer-- two days a week for a couple of hours.

Today she took him swimming at Grandpa Bodily's, 

then walking, then fed him lunch.

Huge, huge help in my life!

Camporama

Rough day for the little guy.

We had physical therapy at the park-

and it was a bust.  We cut it short.

 Then, his favorite therapist, Momma Gump came...

 and he could barely muster up a few smiles for her...

she left after 15 minutes.

It was not a banner day.

 There must have been something in the water.

Kean had a bad day and so did "Motorcycle Jeff"...

but nothing a little Harley ride couldn't fix... right?

 Notice the Go-Pro camera on Jeff's helmet?  The movie making

continues...

 The girls are sure having a good night.

The Moomey's grand kids are in town and Byron promised them

a camp-out on the back lawn.

 Jack will take the little tent.

Four girls will cram into the yellow one--

All I can say is I'm thankful I'll be sleeping in my own bed tonight.

 They had a special visitor crash their party tonight-- 

one of our favorite college kids-- Rachel Alderman.

Poor thing got mauled by a pack or rabid girls!

 Somehow, I do think she will survive!

Wild Kingdom

Kean started off his morning with a ride on Romeo

for horse therapy.

Our boy has really turned a corner-- he now

loves to ride.

Today, we tried trotting for the first time

and he was all smiles-- big ones.

(my camera skills, however, won't make you smile.

I haven't quite mastered holding the phone up and out,

holding onto Kean's britches

and running alongside a horse).

After therapy, we took a short walk through the neighborhood.

We were stalled out for a while after we came across

a big ol' snake slowly making his way across

Grandpa Bodily's driveway.

I was too freaked out to get a picture.

But we did get a picture of this wild little bunny in the neighbor's yard.

That wasn't the end to Kean's day of wildlife...

we saved the most ferocious one for last...

the untamed, wild Harley.

If you won't count that, the boys

did see a dead snake on the road.

Today, Jeff had us grab one of Kean's 

favorite C.D.'s to jam to as they rode...

These two guys are about as cool as they come.

Neighbors

Let's talk crazy, cool coincidences.

Guess whose office is right across the street from

where Kean goes to therapy school every Monday morning?

Motorcycle Jeff and Motorcycle Bill's office!

Their architectural firm is literally right, smack dab across the street!

Can we say meant to be friends?

Anyway, today, after therapy, I took Kean (and some treats)

over to their office to say hello and meet the women behind the helmet.

On the far left is Lisa.  It was her husband who designed

the skulls, the flames and the eight ball for Kean's helmet.

Ashlund (on the far right) was her partner in crime.

Of course, that's Motorcycle Jeff holding the boy.

And Shannon is in the green.

Unfortunately, Motorcycle Bill got called out of the office for a meeting.

Guess we'll have to go back again.

p.s.  Kean finally said the word "Jeff".

Now onto "Bill".

p.p.s.  Kean asked for a motorcycle ride about

20 times while we were there.  Crazy kid.

Mmmmm, Toes.

I think today was a bit better than yesterday.

Kean was still a pill though.

His Speech Therapist really had to work overtime 

to keep him participating.

As I said, Pill.

He was, however, pretty darn cute with his Pops the other day.

The ol' foot in the mouth trick never fails to make me smile.

Twas the Night Before Chemo...

AND all through the house...

Keanut felt good...

Our spirits could not be doused.

At therapy school this morn,

  he charmed, he dazzled.

We must toot his horn.

Since this good space will be short lived...

every hope, every wish

of course we will give.

"Motorcycle Bill" came to make the day.

 

 For a greater guy... we couldn't pray.

This poem shall torture you no more-

tomorrow I will go back

to the writing I did before!

Surgery Eve

Kean was most uncooperative for therapy today.

Remember last week when he dazzled us by taking seven steps?

Today, he acted like he couldn't take a one!

He'd crumple to the floor every time we tried to get him to use those two feet.

Andrea did have a walker in her car and we did get him

to use that...

 for a pass...

 or two.

 But that was it.

And if Kean exceeds and excels in any area-- it's stubbornness.

 Maybe he's just rebelling because he knows what tomorrow holds.

Surgery.

Ick.

A surgeon is going in tomorrow to take his testicles that have ascended and suture them into place

(plus a few other little things that have to do with his junk).

I had to take him down to the hospital today

for a bunch of testing on his blood- to make sure

his platelets and counts are high enough for the surgery to proceed.

Thank heavens, Jenn was there to keep him entertained.

To be honest, it is not tomorrow that I am dreading

(even though we have to be there at 5:30 in the morning)...

I'm dreading the night and the next few days of pain.

Thank you to my sweet neighbor Casee who called and said she was

swinging by some fresh eggs

and also brought a big ol' pan of enchiladas for dinner tonight.

I truly am surrounded by great friends!