This Is Me!

A fellow cancer mom sent me a link to a letter.
This letter had me nodding my head one minute and crying the next.
Whoa, did it drag up the memories.
And bring back all these nightmare moments we somehow survived.

The letter is written by a mom who has a daughter who fought cancer-- a letter written to all the moms out there who have children who are healthy.
IT IS POWERFUL
In fact, it is as if this mom got inside my head, scooped out my thoughts and put them onto paper-
in a very eloquent and heart felt way.
Here's the link.

http://herdingchaos.com/2016/02/04/dear-normal-moms-a-letter-from-a-chemo-mom/

Making Friends With the Enemy

Another surprise.

I thought once Kean had all that icky Chemo out of his body,

we'd see an end to the constant battles to get him to eat.

Um, not so.

It is as bad as ever.

So bad, I talked to his Oncologist about it.

The Doc says it is quite simple:  food has been the enemy

for so many years-- making him nauseous, tasting like metal etc.

It should be of no surprise he still doesn't trust food.

Meaning, we are starting at square one-- trying to "make

friends with food".

Any suggestions on how we are supposed to do that, please

send 'em my way.

Meanwhile, I have found one thing he is "best friends with"

(even though I think it looks and smells like vomit).

The ol' Chef Boyardee's Ravioli.

 He polished off an entire can for lunch today-

would have nothing with my fish tacos for dinner

and asked for another can of Ravioli.

At this rate, I'm wondering if investing in Ravioli stock

wouldn't be a wise move.

While the boy was napping, (came home

exhausted from Kindergarten again),

a dear friend came to visit.

She and her family are moving to Arizona.

They've been through the ringer with her husband's

brain cancer.  He's done with his treatment but 

still struggles with some of the side effects.

So if any of our Arizona friends have any connections

in the Prescott area-- he needs a new career.

One that isn't high stress, too loud or too intense.

Stupid cancer-- that ugly gift that keeps on giving!

Ug.

Whoa....

We had one of those rock and roll weeks.

On Wednesday night, some friends of ours came up from Buhl, Idaho.

The Benson's youngest daughter -- just like Kean has that

double whammy:  Down's and cancer.

We got all the kids pizza while the adults went out

for a much deserved night out.

 The next morning, we joined the Benson's and two other cancer families

for a day up in the mountains for white water rafting.

 We had the absolute best time--- we are friends with

all these families and love being together.

 There is this organization, River Discovery that takes

cancer families out on the water for the entire day.

It is pretty close to heaven-- relaxing at times-- thrilling at others.

With beautiful scenery all along the way.

Reese didn't even make it ten minutes on the bus back to our cars.

I just wish I could have pulled that off.

 As if we didn't have enough excitement, we pulled off

on the way home and spent a half hour at our favorite

river side beach.

I don't know where the kids get their energy

rafting all day, rock diving on the way home.

 We got home in time for my cousins to pull in from out of state

for a quick over night stay.

I'm bummed I didn't get any pictures

because we love, love, love these cousins.

They left Friday morning.

Friday night, Byron and I sneaked out for a quick date night.

 We headed up to The Village complex

where we listened to live music and

checked in on our Baldapalooza booth.

We are just over one month away.

It is going to be epic (to quote Greer).

 Oh, and in between all that, we've picked over thirty gallons of

Blackberries.

Our little Kean wouldn't eat a thing for dinner tonight

(other than 8 grapes)

but I did get him to down a Blackberry milkshake

filled with three tablespoons of cornstarch.

The ones we had -- had to taste much better than his.

But he still downed it.

This boy.  Can't wait for him to be off all these drugs

that sure mess with him.

I Loathe You

That vile word cancer has crept back in to our lives tonight

terrorizing someone I hold very dear.

Didn't know it was possible to hate something more than

I already did.

I Cracked

So I completely lost it today at the hospital.

The runny nose to match the runny eyes kind of lost it.

The totally humiliated myself in front of a stranger kind of lost it.

(disclaimer:  picture taken after fled  left the office). 

 I don't know if you remember but a month or so ago,

we got a letter from the Idaho Disabilities Commission 

saying now that Kean is five we needed to have him

re-tested for Down syndrome and Global Delay to continue to

qualify for therapy

(what, like the Down syndrome was just gonna go away?).

Anyway, the full IQ testing required is usually only offered

as part of an 8 hour psychological workup and neurological testing.

Earlier this week, we met with the doctor for observation to confirm the fact

he'd never be able to make it through 8 hours of testing.

So today's testing was "only" supposed to last 3 hours.

Ummm, we were done in one.

And this picture is probably one of the highlights of the session.

It was awful.

No, make that horrible.

Once a week he takes a drug that supposedly makes

everything in his body hurt.  Well, he took that last night.

Who knows if that is why he was so ornery or if he is just 

going through his "terrible twos" (at age 5)... but he was a total pill.

He threw all the toys the doctor had for the testing.

He'd just look at her when she'd say "put the horse behind your back".

(He finally picked up the horse but had no idea what to do with it-- 

and that was one of maybe three

times he cooperated).

After what seemed like forever of him not cooperating, he burst into tears, sprawled

out on the floor and sobbed.

I then made the mistake of saying that this is my huge fear for

him since he is supposed to start school after he finishes Chemo

in the Fall.

He is so not ready!

That's when I totally started bawling.

Ug.

I just don't know how he will ever make it through school.

The good news is we finally got him (and me) settled down.

Nothing like singing every song from The Sound of Music.

Thankfully, the doctor joined right in.

Yep, she should get awarded an extra few letters after her name 

for that one.

The better news is, she talked to the state (she's had one other child

like this who was unable to be tested) and she is having me fill

out several booklets with a gazillion questions about his abilities

and lack of abilities.

She is also going to collect evaluations from his therapists

and put together a report from all of that and what little

she saw.

I've realized tonight, it really doesn't matter

whether she was able to get much out of him.

The bottom line is-- he still needs a lot of therapy

and intervention (especially with the Chemo slowing him down even more)

and no matter what, she would have figured that out.

I think I had one of those days today where I realized

just how much work we have ahead of us to get him where he should be.

Blasted cancer!!!

Dancing Queens

Talk about feeling like Cinderella at the ball

(especially since I got to come home today and clean house).

Last night Greer, Reese and I went to the Boise State Dance Marathon.

The Moomey's watched Kean and Byron and Holland went to 

Montana for a funeral.

Over 700 students dance for 17 hours straight to raise 

money for St. Luke's Children's Hospital.

 Even though Kean's never been able to go, he's been one of 

their honored kids for the past three years.

 The event gets bigger and bigger every year.

This year Kean was one of twelve honored children.

 And not only does it get bigger, it gets better every year.

To give you an idea, the first year they raised just over 5 grand.

Last year, it was over 35 and this year-- drum roll please--

they raised over 66 thousand dollars!!!

The afternoon started with this adorable band of siblings:

The Runaway Hamsters singing four of their original songs.

(One of them they wrote for a schoolmate battling cancer).

 Our family was asked to kick things off with a speech

about what Dance Marathon has meant to us--

which is tons.

We love everything about this night and wish we

could take you all with us to experience it first hand.

The students are so welcoming and fun to be around.

Greer and Reese get pulled in and always somehow

 end up dancing in the middle of things and making a million new fast friends.

We were also asked to give a second speech telling Kean's story.

This time we went up on stage with some of the BSU football team members.

They were one of our favorite parts about last year-- making us feel

a part of the party, so cute with the girls and dancing up a storm with Reese.

 I've decided if you ever want to feel short and tiny-- just 

stand next to these guys!

 They are the best-- not only did some of them

spend lots of time dancing with Reese, twirling her around,

teaching her how to line dance etc., 

they went up to the Honored Kids room-- the Champions Room,

to take pics, sign autographs (and get the kids autographs-- so sweet)

 and to play games with the children.

They are all pretty impressive young men.

Actually, all of the students we hobnobbed with are beyond sharp.

Nick and Sidney (below) are the two top organizers and trust me, you'll

be hearing about these two some day.

All I can say, is our future is in good hands.

 They made sure the girls had a grand time--

 We stayed as late as we dared--

let the kids dance, play games and party.

And I probably don't need to tell you-- but they passed out in the car

on the way home.

Next year we will be going for sure-- with Kean!

Bittersweet

I had the best surprise today.

As I was leaving a breakfast meeting (Kean was in therapy),

I heard someone call my name.

It was my dear friend Jenny--- who was a huge part of Baldapalooza

the first year.

When I first met her, she had just finished some pretty harsh treatment

in her fight with cancer.  A short time later it came back with a vengeance.

Last I saw her, she was moving up to Washington for her

second bone marrow transplant and things were pretty iffy.

So it was especially sweet to see her this morning-- with hair!!!

 It was also a big day for Holland-- make that a nervous day.

Today was the day she found out if she made it into a specialized high school.

In a nutshell, Holland wants to be a Pediatric Oncologist.  The specialized

school is a Medical Arts school.  If she goes all four years, she will graduate

with 42 college credits, certification in two of the following:  a CNA, a Pharmacy

Tech and/or an EMT.

It is intense, accelerated but very impressive.  The classes

range from 9 to 15 students and the teachers were what

really won me over.

I kept my mouth shut the night we attended the program/open house

and Holland was sold all on her own.

 We were there a few minutes after the lists went up

(they accepted 65 students in the Valley) and drum roll:

Holland was on the list..

 We were super excited until we saw that her best 

friend didn't make it.

So kind of a bittersweet day.

Guilt Erased

I went to bed last night, covered in a blanket of "Mommy Guilt".

An overly tired and not feeling so great Reese tearfully told

me she was the only kid in her class that didn't have a parent

at school for yesterday's holiday party.

Ug.

But you know what?

Something happened today-- to make me feel a heck of a whole

lot better and to realize while my girls may be missing out on

certain things-- they are having many, many more amazing 

experiences because of Kean's cancer.

Case in point:  a fellow member of the "cancer club", my

mom's neighbor Janice (and her mom Crickett) came over 

today.  We have all fallen in love with our dear Janice and

her husband and mother.

Janice, if you will remember, is a walking miracle.

Both St. Luke's and St. Alphonsus hospitals here

told her there was nothing further they could do to treat her cancer

and that was a few years ago.

Just last month, she had what we hope to be the first of many "clean"

(cancer free) scans!

 Janice came over today bearing more gifts than I think

Santa has in his workshop.

 Even "Chemo Kean" perked right up at the site of--

count 'em - not one, not two, but three motorcycles

and a little horse!

 There where so many fun things--- from these play

microphones (that inspired an impromptu Christmas Carol concert)...

 to a red nose that flashes.

 I really question whether Santa even needs to come now--

the kids were so spoiled.

Thank you Janice for all the fun surprises

and for still being here with us!!!!!!

Cancer Perk

Thanks to Kean having cancer doesn't sound quite right.

So I'll say... because Kean has cancer, we've had some

opportunities as a family we'd never have had otherwise.

Case in point, we were invited (with several other cancer families)

for a special afternoon with the Boise State football team.

Byron had to work, so my mom went in his place to help me

wrangle the kids.

 And wow, were we ever spoiled.

We started out with the Assistant Athletic Director in the "film room".

He told us all about the program (did you know BSU has

 won more games than any other team in the country since 2002?

And did you know BSU players are second in the country for academic gpa?).

We even got to watch two short videos about some neat things they do 

as a team.  Kean loved the videos and was clapping wildly at the end of

each one.

 We were then taken on a tour of the entire facility--

and trust me, it is quite impressive.

We started with the cavernous weight training and work out rooms.

 The trainers were there to answer questions and show the kids around.

 We saw where they get massages, physical therapy,

and even the shower room.

Kean was wandering around telling everyone "hi" that he met.

He was a maniac.

But a cute maniac.

 The locker room totally surprised me.

It was really nice and neat.

And get this--- NOT smelly.

They have some fancy ventilation system that sucks air

in and around each locker-- the place smelled great!

Not even a tinge of sweat.

We were so excited to find a locker of a player

named Kevin Keane.

 And guess who we ran into during their scrimmage?

Mr. Keane himself.

He's the "long snapper" and about the nicest guy you'd 

ever want to meet.

 In fact, after the scrimmage, he came over to find his

new little buddy, Kean-- just to give him a fist bump.

 The girls got a trillion autographs.

I was floored at how kind and friendly the boys were.

Kean, my mom and I were just standing off to the side

and we had so many players and coaches come over,

introduce themselves and talk to us.

Some even asked to have their picture taken with Kean

on their phones.

This guy is named Brennyn Dunn.  I had to look him up-- he's a Tight End.
He made out night by coming up to us and remembering our crazy family!
 We had met him last February at the Boise State Dance

Marathon to raise money for St. Luke's.  

The team came out to support the event and Brennan

had swing danced with Reese quite a bit (tossing her up and around).

 He was so cute again with Reese and made her promise

to save him a dance at the next Dance Marathon!

All of these guys were just darling with the kids.

 Finally, we met the head coach, Bryan Harsin and no surprise

here-- he was as gentle and kind as his players.

He totally got into giving Kean fist bumps and high fives.

I think this team earned some life long fans this evening.

We had a great night.