Blowing Bubbles and "Stink" Eye!

Big exhale.

Yesterday was Kean's regular cancer screenings at MSTI.

He wasn't too happy to get his arms numbed up for "vampire draws"

but once we got there... they are so dang cute with him

he seems to forget why he is there.

 I'd have to say if I had someone blowing bubbles and singing to me,

I'd be happier about my doctors appointments too.

 In honor of National Pay It Forward day, my company, Scentsy, gives

all 1058 employees a ten dollar bill and a little card

asking the recipient to pay it forward.

While at the Cancer clinic the nurses told us about a teen boy who was

having a particularly rough day-- Kean and I went over, introduced ourselves

and then Kean gladly handed him the card and money.

It sure brightened our day-- hoping it did the same for Jake.

By the way, Kean's counts look good.

That's the great news.

The bad news is he woke up with a gift from the clinic--

Pink Eye.

So another day off of school.

This makes day 49 this year.  Isn't that insane?

And he has two weeks he's taking off for surgery starting

May 9th.

This boy is a record breaker I tell you!

The Dancing King and His Queens

Friday night we had one of our best evenings of the year.

Boise State's Dance Marathon is something we look forward to all year long.

Hundreds and hundreds of students dance all night to raise money

for St. Luke's Children's Hospital and the Children's Miracle Network.

 Kean's been one of their "Champion" children since they

started this event at BSU five years ago.  Of course, this

was only his second year he was well enough to attend--

and just look at him up on stage with some of the other honored

kids and some of the dancers.

 Part of what makes this so fun, is we've grown to love

many of these students.  Here the kids are reunited with

Kendra from last year.  We adore this girl!

 In the hopes of getting the students motivated to keep dancing,

they had our family (and others) get up on stage and tell

our story.

 Kean was so great on stage-- totally comfortable

and even babbled something into the mic.

 They lined up the portraits and stories of all of the honored kids.

 I had to stop myself from stealing Kean's and taking it home--

it was so cute!

 They did let us take home the posters where the kids

wrote the kindest notes to each of the children.

 It is such a fun event-- lots of food, treats, visitors---

Kean was quite intrigued by the giant cow.

I'm not sure what a cow has to do with the Boise State Broncos,

but Kean loved playing with the poor guy.

 Of course, there was a lot of dancing.

One of my favorite moments?  Reese dancing with Kean.

She weighs a whopping five pounds more than he does.

 I loved this coed-  who came over, plopped down on the floor

and hung out with Kean for about twenty minutes.

 In fact, that's one of the things we love so much-- we must have

been hugged by at least a hundred students.  They are so great 

and friendly with all of us.\

This is a picture of our dear friend, Drea-- the student who heads

up the entire Dance Marathon.

Everyone paid a buck to put a piece of duct tape on her

to strap her to the wall.

My girls were right in there!

 Another fun fundraiser, was Jail.  My mom sent Reese

to jail for ten minutes.  We like to start our juvenile delinquency

off young.

 We couldn't leave Holland and Greer out of the fun.

We hired Malek (the guy on the left) to round them up and haul

them off to the pokey.

 We were there for about five hours (not in jail, at the event)-- and the dance floor

just kept growing.

 The student union/rec center regulations don't allow anyone

under 18 to stay past ten.  So at about 9:30, all the hero 

families went back on stage.

Kean had his little harem of coeds surrounding him.

 He wanted nothing to do with his family-- he was

too busy dancing in the arms of one girl after another!

 And he didn't even seem phased by the fact there was nearly

a thousand kids dancing and watching him.

 Our favorite part - hands down-  is the end of OUR night--

when all the students form a monster of a long tunnel

and we all run the gauntlet-- telling them thank you and

giving them high fives.

 It is an incredible experience...

 where we feel nothing but love.

Kean ate it up-- especially since he was being carried

the entire time (her back must be aching today)

by a cute, blonde co-ed.

We went home to bed (Kean was asleep before we left the parking garage)

while the students danced all night.

They unveiled the funds raised this morning.

Drum roll please....

$150,712.62 RAISED FOR THE KIDS!

Can you believe that?

The future of our country is in good hands.

Seriously.

Paging Doctor Freud

If you've been around us much, you'll know Byron and I 

half joke that we don't save for college for our girls.

Instead, we save for their counseling bills!

Today was one of those moments that remind us maybe we shouldn't joke.

Reese's fourth grade class had a "Poet in Residence" work

with them for the past few months.

Today, they presented their book of poems to the parents

and each read the poem they had created.

 Some were great.

Some not so.

Reese's shouldn't have surprised me but it did.

She wrote her poem about Kean and of course, his cancer.

Stupid cancer- as much as we try to not let you rule our lives,

somehow you are always there!

Reese's was very sweet.

It was as if she was taking us through a photo album of Kean.

I'm glad she was the one to read it.

I couldn't have gotten through it.

 While all the other kids seemed to write about

friends, animals, TV shows or video games--

here she is writing about her brother.

 I can't help but wonder how much of an

impact this has had on her little personality,

her outlook on life and her future.

The children were all so little when it started.

Kean was 2, Reese was 5, Greer 8...

 and Holland only 10.

So very much has happened in those years...

 I was thinking about this today.  Cancelling Reese's birthday

party with her friends and having a cake and pizza in the play room

at the hospital.  If anything, I guess it will be memorable.

But I still worry.  These girls have sacrificed, lived like hermits and

been ignored at times.  How much have they  internalized of their

parents' stresses about Kean's health, the never ending bills and

the monster sized fears that accompany cancer?

That still haunt our home..

I comfort myself with the knowledge they've seen first hand

a tremendous amount, no make that, a mind-boggling amount of

love and service shown to our family.

They've made friends in our world of cancer-- with nurses, doctors,

other families, Boise State students who put on dance fundraisers,

and of course, with all those involved with Camp Rainbow Gold.

They've had experiences we never expected (Make A Wish, Share Your Heart Ball, Baldapalooza)

and never could replicate.

They have huge hearts, are all three compassionate little souls

who want to reach out and hug any person they meet who has cancer.

Hopefully, all that will far outweigh the bad.

Hopefully, all that will help them overcome seeing several

family friends lose their children to cancer.

Hopefully, this will make them all better members of the human race.

Hopefully, they will someday be able to remember this time with fondness

(and that their parents were just doing their darn best to survive).

Hopefully, they will remember all the bright spots, the kind hearts, 

the incredible opportunities.

And hopefully, they will block out the darkness that

some days creeped into every corner of our lives.

We did try to protect them from those days.

But dang, these kids are smart and pick up on more than we think.

Maybe I think too much

and they'll be just fine.

Big Boy

So not only is he now a big Kindergartner

but as of tonight, Kean finally opted to sleep in his

"big boy bed" rather than his crib.

(He was almost too excited to go to sleep).

  And don't forget, this Thursday night is Kean's big party at the park.

He's giving the thumbs up to each of you who have supported him, loved on him

and shared this journey.

We hope you will join us as we kick cancer to the curb.

   We have reserved the Sunrise Shelter at Stephen Guerber Park (2200 E Celia Ct, Eagle, ID-- just off Highway 55 and Hill Road) for Thursday, September 24th from 5 to 8. Pot luck. We will provide dessert. And if you'd like, bring some art supplies to donate to Camp Rainbow Gold, Inc.. please do.

Oh, and motorcycles are more than welcome.

Fini, The End, Amen!

See that syringe in my hand?

It is Kean's very last Chemo treatment.

His last.

Oh my gosh, it is over (this hard part, anyway).

I don't know when it will sink in.

You'd think after 1,157 days it would sink in--

but it may take a few.

 The sunrise and sky was glorious this morning.

There were rays shooting down- as if  Heaven was

smiling and sending congratulations.  I wish my camera did

a better job.  It was beautiful.

 And trust me you are gonna want to watch this.

Kean wasn't feeling well this morning so we had him

out on his swing on the porch.  Byron and the girls decided

to put on a little "end of cancer treatment" show--

until near disaster hit.

Reese is fine, a bit sore but fine.

We then changed the song to:  "last day of cancer treatment,

last day of cancer treatment.  First day of broken arm, oh

here we go"!

We dodged the bullet on that one.  

Finally, this evening, my good friend, Fabiana

came over with her camera,  Motorcycle Jeff

came over with his Harley and we had a photo shoot

to commemorate Kean's last day of cancer treatment.

 Other than him taking off his leather jacket and shoes

during the photo shoot and throwing the sign

my friend Cindy Maliwauki made for the photo session,

he did surprisingly well.

Hopefully, we will have pictures to show you TOMORROW!

I can't wait.  They are so fun!

 And guess who got to go on a cycle ride--

Kean was sure in his happy place tonight.

I don't think he quite understands why we were

all making such a big deal out of him taking his medicine.

When Cancer Doesn't Totally Suck!

I have said over and over again the past three plus

years have been the most agonizing and brutal of our life--

but also, the most beautiful and tender.

Because of Kean, because of his cancer and Baldapalooza

I have been emailing back and forth with the manager of

Imagine Dragons;  Mac Reynolds.

As successful as they are, he excels in the kindness category.

He and his band clearly have big hearts.

(They actually have a foundation that helps families

dealing with childhood cancer-- this video gives you an idea

of what caliber of men make up this band):

https://www.youtube.com/watch?v=ISpAgxW1vQw

Mac offered our family tickets in their friends and family 

section for the Dragon's final concert of their American tour.

We were quite spoiled with VIP parking

(I've never parked so close at a concert in my life).

 Obviously, we couldn't bring Kean.

Which is quite sad, in that because of him fighting cancer,

we got this opportunity.

But he got to stay home and get spoiled by his "Aunt" Pam.

The rest of us were wowed with our seats...

 and wowed by the incredible show.

 That is, all of us, except for Reese.

She fell asleep during the second opening band

(first Halsey and then Metric).

Man, she must have been tired to zonk with that loud of music

shaking our chairs.

She did wake up enough to see a good 20 minutes of Dan Reynolds

and the boys dazzle the arena.

 It was such a treat.  

We feel very spoiled.

The Wish Grantors

See these darling ladies?

They are the "Wish Grantors" from Make A Wish.

Tonight was our big meeting.

Now that Kean is rounding the corner to the finish line

with his fight against cancer, it is time to start planning

for his big reward, um, I mean trip.

They asked all kinds of questions about Kean's favorite things.

Likely, we will end up going to Disney World as a family.

We figure it would be the perfect marriage of his two great loves:

Maximus (the horse from Tangled) and his need for speed and 

love for all things "rides"

(motorcycle, four wheeler, tractor etc.).

It is so exciting to see the planning begin.

For one, it means we are getting closer to the end!!!!

And second, it will be downright, absolutely, totally 100 percent F.U.N.

Some Answers

We had another doctor's appointment.

I can't complain about this one.

Kean didn't have to have any tests, get any shots

or give any blood.

In fact, it went about as well as a doctor's appointment can go.

We saw his Endocrinologist-- the doc who is trying to figure

out why Kean keeps having those Hypoglycemic seizures.

Typically we see them when he doesn't eat well, then takes

his nightly Chemo (which he has take fasting at night).

Then he won't wake up in the morning, is sweaty, clammy

and totally non-responsive.

It is incredibly frightening but now that we know it is caused

by low blood sugar when he doesn't eat, it has eased the fear a bit.

(I still am spitting adrenalin trying to revive him each time it happens).

Anyway, he's had several of those episodes, especially just after heavy Chemo

when we can hardly get him to do anything other than cry-- let alone eat.

 Kean threw me for a loop a month ago when he ate a ton of food at dinnertime

and then wouldn't wake up the next morning and had all those 

horrible symptoms/side effects.

Dr. Flynn put me at ease today with his thoughts that there is not something else

wrong-- but that his body is just under so much stress with the cancer that

he can't hang onto any extra energy to keep his levels up during the night.

The doc assured me this problem will likely go away once he's done

with Chemo.

Yippee!!!  Another huge reason to celebrate come September.

We did, by the way get a prescription for- and in - office training

on how to give Kean a shot in the leg to get him to come around

when he is non-responsive and won't drink orange juice etc.

Joy, another prescription to pick up (and add to our impressive collection).

Meanwhile, tonight was Holland's Medical High School's orientation.

I'm still in shock she'll be in high school next year.

Greer went with us-- and was more than willing to pose

in the perfect light after our storm.

 She's a keeper, I tell ya.

NEGU

I have been stressing the past few days--

first about Holland getting into her medical high school (check)

and now about Greer auditioning and trying to get into

a special arts school.

 Today Greer sang her guts out, did scales and read music

for a small panel of judges--

something I'd never have the rocks to do.

I keep telling her just to audition was a good experience.

Unfortunately, the school doesn't have any openings.

They may, just may have some if someone moves, drops

out or changes schools (hence the auditions).

We'll see what happens.

Hoping our streak of good luck continues.

 We did get another surprise package in the mail 

from the folks who make "Joy Jars"-- it is a foundation

honoring a young girl who died of cancer.  The organization

sends out periodic packages to children in the midst of their battle

(and sometimes siblings too).

 It is such a fun pick me up.  

Kean got all kinds of things-- a fuzzy blanket, a pillow case,

toys, a water bottle, and a stuffed dog.

 Most everything has their logo on it--

NEGU

Never Ever Give Up!

And we won't.