Might As Well Go Out With A Bang!

Good heavens!  You'd think here we are a few days

from closing the Chemo chapter and we'd at least get to coast.

Um, no.

Kean pulled one of his "wouldn't wake up" and "give mom

a heart attack" hypoglycemic seizures this morning.

 Eating has been a battle for the past two weeks

with him not feeling well (between Chemo and a cold)--

I thought I got enough down him last night but guess I didn't.

His blood sugar was 41 and lucky me, got to give him

a shot in his leg to get it up.  If you know me, you'll

know I detest needles and putting one into his thigh

is right up there with getting four root canals simultaneously.

 What had us scared this morning is that he didn't come

around even after the shot and after drinking orange juice

and eating a little.  Just when I was about to haul him 

down to the ol' hospital, he finally perked up a bit--

 but that wasn't until nearly nap time and after he just 

wanted to be held much of the morning.

I will not miss these moments of terror one bit.

Notice I'm planning on them ending with his Chemo.

They had better.

The End of an Era

Changes are starting to come fast and hard as we count

down the weeks to the end of Kean's Chemo.

Once that ends, he will start Kindergarten (school

actually starts next week but Kean won't start until mid-September).

And that means we will put a stop to all of Kean's home therapies.

Maureen, Andrea and Claire have been coming to our home

for years (Maureen since Kean was one- I think).

Today was Claire's last day coming to the house as his Speech Therapist.

 We love, love, love these ladies-- they have become part

of the family.  So today was quite the milestone.

Oh, we'll see her again.

Once Kean gets his "sea legs" with Kindergarten, we'll

likely start going to see them in their office

but it is still bittersweet.

 Kean also had horse therapy this afternoon.

I should say, Kean and his entourage.

Greer and Reese went with us-- and we were joined

by Clark and Laryn who have helped us

with his horse riding all summer.

You should have seen us today.

All Kean wanted to do was "trot, trot, trot"!

Heavy Metal

Oh to be a kid again.

The girls set up the massive Slip n' Slide in our yard

this afternoon-- and the kids came flocking.

Kean was in heaven.

Holland (and his other sisters) sure are good with him.

 They all vie to see who gets to slide with the boy.

He loves it and I chalk it up as time spent building up those

skinny ankles and working out.

 You'd think he'd build up a huge appetite.

Um, no.

Stupid Chemo he takes on Wednesdays makes

everything taste metallic.

He won't eat much of anything.

Case in point, tonight and last night for dinner,

the only thing I could get him to eat was

bacon beef jerky.

 Really.  Oh, that and chocolate milk with tons

of raw cornstarch to keep his body from 

crashing over his lack of food.

 I don't know what I will do with myself when

all this stress over Chemo and its side effects

is over.

We are getting there.

The Good and the Bad

Today was one of those days we just want to clone.

Kean was happy, ate decent, took his meds without complaint--

basically a no drama day (well except for that moment when

he smacked the little girl next to him at therapy-- sigh).

He and his Daddy went for a long motorcycle ride

on a near perfect afternoon.

 This evening we all went out and started planting our garden.

Kean was quite the dirt chicken by the time we were done.

 But we got a good start on things.

We have to take advantage of these moments.

Tomorrow, unfortunately, Kean has heavy Chemo at the hospital.

What a drag-- but once again it means we are another month

closer to being done.

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.

Attitude Adjustment

Today was one of those gloomy days...

it rained this morning, cleared up a bit, rained again, cleared up a bit....

Well, you get the idea.

Kean was in a mood that matched the weather:  gloomy one minute, partly cloudy the next.

He had Methotrexate yesterday so was no so hot on eating

but really hot on cuddling and snuggling.

About 5 p.m., we got a text from "Motorcycle Bill" that it was a gamble

but the skies would maybe hold for a quick ride.

 That was all it took to get the boy feeling better and ready to go:

It sprinkled on them a bit...

 but overall, the skies held their downpour until they got back

safe and sound.

 I wish you could be here in the house to watch Kean go

from whining and whimpering to smiling and excited

with just six simple words-- "wanna go for a motorcycle ride?".

Ah, that it were only that simple for the rest of us to have

such a quick change in attitude.

The Human Pin Cushion

What a doozy of a day.

Luckily, we had Sheryl Alderman as our early morning Chemo date.

I couldn't have done this without her help.

 She even brought Kean a new pair of "Lightning McKean" socks

to get him through his procedures.

When they took Kean away for sedation and the MRI--

he was very brave and didn't even freak out.

 I always do (inside) a little bit... but that's probably pretty normal.

 So a few crazy things happened while he was away from his momma.

First, the Anesthesiologist  decided to start an IV on him after he was sedated via gas.

He opted to do this to avoid running the risk of introducing infection by using his port.

 I guess they got the IV going and then it failed-- so get this, they tried another four times!!

He looked like a little voodoo doll with all these pricks and dried blood!  Poor guy.

They finally ended up using his port.

Second, there was a mix up and the Chemo Kean was supposed to get in his 

spine and brain wasn't ready-- so we will go back for another procedure on Monday.

So much for me winning the battle to get both procedures done with one sedation.

Third, he shocked everyone and came out of his sedation rather quickly-- before

they had even gotten me back to the recovery room.

And our little pill was so agitated, he pulled the IV out of his hand and the port access needle

out of his chest!!!

The kid can't stand having anything, anything on him--

it is amazing we kept the oxygen monitor on his finger. 

It was quite the roller coaster day--

but geez, you'd think by now we'd be so used to those.

Here's the good news,

he's totally happy and fine tonight

and the doc called with the results of his MRI-- and it came back NORMAL!!!!

Perhaps now his primary Oncologist will put a little more weight in my theory about Kean's seizures.

P.S.  We weren't the only ones to have a traumatic day.

Poor Holland.

The mobile butcher showed up to the house early and Holland

(our tender hearted animal lover) saw the two cows just after they'd been taken down.

Let's just say there's been a lot of crying at the house tonight and a

very serious discussion about her wanting to become a Vegetarian.

A Medical Education

Just a quick update.
I'm too tired to do much more.
I did hear from the Pediatric Neurologist's office today.
Ladies and gentlemen-- we have liftoff:  an appointment 
for Monday, March 10th.
Meanwhile, Kean's Pediatrician (Dr. Sandstrom) called me
from her home on her day off to talk about Kean's episode.
I told her about my research on the Internet and what makes
most sense to me-- and get this, she agrees.
So for those of you who find this medical stuff interesting--
here's the theory:
I found a paper about a 4 year old boy with Acute Lymphoblastic Leukemia (Kean's Cancer) in the same phase as Kean's in, taking the same drug each night.  This child was having seizures brought on my severe Hypoglycemia.  
I looked up the symptoms for severe Hypoglycemia and they sure fit his symptoms.
Dr. Sandstrom looked up his glucose levels from the E.R. and they were just barely in the normal range:  65 (normal is 60 to 100).
Plus, on the other three occasions, he came around slowly but surely after I gave him Pediasure and whole milk.
When I took him to the E.R., they wouldn't let me give him anything to eat or drink until they ran some tests-- and boy, did those symptoms hang on.
So maybe, just maybe we are on to something.
Of course, there's nothing I can do or give him to prevent another episode. So it probably doesn't matter what it is.
We see his primary Oncologist on Tuesday.  We'll see what he has to say.

The Pinup

We survived today and really, it wasn't too bad.

Unlike the last time he got Vincristine, he didn't wake up this morning

in pain and refuse to put any weight on his legs.

In fact, we had somewhat decent PT and OT therapy sessions today.

Don't get me wrong, he was quite whiny, often teary and overall grouchy

but so far, its been nothing like the last round.

And for that we are thankful.

I'm also thankful for big sisters who adore their brother.

While I made dinner tonight, Greer made a little music video 

starring Kean.

And even though Holland did this the other night, is shows

how much these girls love to play with the boy.

 Holland has been on a makeover kick-- and Kean's an easy target.

 Please notice the little details... the earrings...

 and the rosy cheeks.

I drew the line and vetoed mascara and eye shadow.

I don't know who loves the other more... Kean loving his "sissies"

or the girls loving Kean.

All Glamour

Too bad mom's don't have Scout uniforms.
You know, the ones where you earn a patch for all the brave
and complicated things you learn?
I'd get my "World Series Incredible and Most Amazing Catch" patch today for sure.
At the table this morning, I was trying once again to get Kean "everything tastes metallic from the chemo" Barker to at least try and eat something... when he up and threw up.
Slap me on the back next time you see me-- because I caught every drop.
Yep, every drop in my little hands!!!
Ewwww.  
I know.
Not quite the life I had dreamed of...
But trust me, it was one for the record books.

A Date With Chemo

We made our trip down to the hospital for Chemo today.

Kean always gets a little riled up at home before we go.  He knows

exactly what's ahead of him... the minute I get out the numbing cream, plastic

wrap and tape to cover it up.

But once he gets there, he's fine.  And why not... he's surrounded by nurses

and Child Life Specialists like Jen who play with him and make him feel like a rock star!

 We had a special "Chemo Date" go with us today:  Jan Ramirez.

She was Holland's first grade teacher, then her sixth grade teacher last year

and our entire family adores her.

I tweaked my back last Friday (lifting my little lug named Keanut-- gotta get him walking).

So Jan was wonderful to lift him and carry him as much as possible.

We met with his primary Oncologist, Dr. Camilo today.  And most everything

looks good.  There's a bit of concern about why his testicles have ascended again--

I guess testicular cancer is one of the lovely side effects of all this stuff he's on-- so

poor boy, they sure examine his junk quite thoroughly with nearly every visit.

Nothing big to worry about yet.  They're just watching that closely.

Today's Chemo dose sure took a long time to get from pharmacy.

We got through most of Cars.

 We finished just in time to race home, get everyone fed, take Kean to my folks

and then head over to the school for registration and meet the teachers.

Talk about chaos.

But we survived.

Poor Reese didn't get the teacher she wanted and sobbed but quickly

pulled it together when she met her new teacher who seems quite wonderful.

Holland was thrilled she got her locker open on the first try.

Oh, the stuff that stresses them out.

The first day of school will come early tomorrow.



Bookends

The boy woke up this morning and went to bed tonight-- g.r.o.u.c.h.y.

Can't say I blame him. 

If I had that much Chemo pushed into my body I'd be a terror.

Kean was supposed to have two therapy sessions today.

Poor Andrea... Kean was most uncooperative today.

We opted to postpone Maureen's session until next week.

The only thing that made him happy tonight

was yep, you guessed it... a motorcycle ride with

Pops-- (and a hello from Grandpa Bodily).



Lazy Daze



Keanut is finally feeling better... just in time to go to the hospital

tomorrow and get zapped with Chemo.

I swear, it never ends.

Tonight at dinner, Reese graced us with her "rock star" presence.

Byron has started calling her "Soul Surfer"... 'cause we caught her

not too long ago pretending to surf with her arm stuffed in her shirt--

just like it had been bitten off by a shark.

That girl and her crazy imagination!

 Holland took Kean for a little pre-bedtime swim.

The two of them should sleep well tonight.

Good thing, we have a big day tomorrow.

Bird Bites

Oh this boy is going to drive me to an early death.

He's still not eating much of anything.

Thank heavens he's still drinking his uber high calorie vitamin boosted milk with Pediasure.

I'm just running out of food options.

He will hardly eat even his old favorites.

Don't know if these pictures tell the story but his face is

broken out-- again. Horribly.

He looks like a pimply teen.

And now I can't tell if he has a pimple on the lower lid of his

right eye or if he's getting an eye infection.

Let's hope it is nothing.

We are scheduled as a family to go on a white water rafting

trip tomorrow (my mom will stay with Kean).

A company is taking a bunch of us Cancer families

down the river for the day.  We've been planning it for

quite some time.  Here's hoping Boy Wonder

continues to live up to his moniker.

Houston, We Have Liftoff

Drum roll please....

Kean's counts were a robust 1000 at his check up today.

They said we can thank the Steroids for kicking them up

and the fact he got a one week break from Chemo.

The good news (well, more good news) is that he did not

have to have Chemo through his port today (just orally at home).

The bad news is because of that, we were not the first to get to try out

the newly remodeled Chemo suite.

 However, he was the first to get anything done in there...

even if it was just the removal of his needle access.

We go back in two weeks to check on his counts

but other than that, we've been given the green light to go to our family reunion--

yippee-- a get out of jail (for now) free card!!!

 I know you will find this shocking... but none of the girls wanted to go to Chemo with us today.

Thankfully, my friend Tammy Christensen was willing to be our date.

The girls, ended up going over to Mari Tanner's house

for fun on their little lake.

 When they wore themselves out completely, they went inside

and did a little craft project-- they sewed up the cutest little handbags.

 Good day for them.

Good day for us.

Silver Linings

We are settling in to the lazy days of summer.

I'm trying to do better this summer than last year when our world fell apart--

by having the girls spend 30 minutes each morning reading or doing math.

Check out how slick this is....

here's Kean in heaven swinging-

 And here's Reese reading her "chapter book" while taking periodic breaks to push her brother.

 So you know how Kean's counts were so shockingly low on Monday that his doc took him off

of his daily chemo at home this week?

Well, I try and force myself to find the silver lining-- and perhaps, just perhaps, I've

found it for this latest set back.

Maybe this break from the poison- oh excuse me, I mean Chemo

is giving him a chance to feel well enough to work on his very delayed speech skills.

Because today he was on fire.

He kept repeating all kinds of words and phrases.

And then tonight at bedtime, he saw Byron and just went wild with excitement

saying "Daddy, Daddy, Daddy" over and over again.

I tell you, it was soooo cute.

Almost as cute as this picture Holland snapped--

(don't know why it is all distorted on the blog- but

you get the idea).