Almost Famous

Does it make us famous if we hang out with someone who is?

Hmmmm.  

We had a great weekend-- Andy Grammer was in town

to perform at the Boise Music Festival.

 Andy was our headliner last year for our Baldapalooza

(children's cancer fundraiser).  He agreed to meet with us

this weekend-- and we got to have breakfast with his Tour

Manager the day before.

That's Angie, our Baldapalooza Executive Director with

Welshie (Andy's Tour Manager) at the festival on Saturday.

 For some reason, he was charmed by we three girls

(Angie, myself and Calene- one of our main volunteers).

We stayed (in the heat) and listened to Andy wow

the crowd.

I, especially enjoyed relaxing and listening to Andy--

last year, I was running around and answering questions

for about a third of his performance.

 So this was quite the treat--  he puts on a fantastic show.

 Oh, and Monday morning brought some big changes to our routine.

Kean started Extended School Year today--

(I think it is a version of Summer School for those who really need it).

 It was kinda strange for the girls and I to push him down

to the ol' bus stop.  He rode his little therapy bike.

 I'm not sure he could figure out what was going on--

new bus, new bus driver, aid, school, teacher

and classmates.

He is such a creature of habit, I'm sure today

was quite discombobulating.

This was one of those times I really, really wish he 

could talk more than he does!

Zip Zip Hooray

And I wonder why I am exhausted.

We have had a whirlwind week.

Here are a few highlights-- Greer turned the big 13.

Yikes another teen.  Heaven help us.

Byron helped the girls make the cutest flip flop cookies

out of Nutter Butters for her pool themed party.

 Greer planned it all-- just handed me a shopping list

put the rest of us to work.

She played a series of "Minute to Win It" games...

from seeing who could eat a donut the fastest

without it falling off a string....

  to moving Oreos from the forehead to the mouth using

only facial expressions, to playing "Junk in the Trunk"

where they had to shake their booties to shake

ping pong balls out of empty Kleenex boxes..

Of course, I was too busy running around to take many pictures.

But I did get cute ones of them swimming in the 84 degree pool

(thank you Gobily's for spoiling these kids).

 And I got pictures of some of Greer's food spread--

her flip flop cookies, her Veggie platter with the sign: 

"take a dip"...

 Her blue Kool-aid:  "Pool Water", peach rings that were labeled

"life preservers", licorice labeled "pool noodles"-- you 

get the idea.

She obviously knows her way around Pinterest.

 They roasted S'mores, played, giggled and jumped

on the trampoline.  Greer must have thanked us ten times

for such a fun party.

Kind of nice to get thanked when she did most of the work!

 The next morning, Holland and I got up before dawn

to help out at the Bubble Run.

My friend Jeanie and I set up and manned the Baldapalooza booth.

We were the charity partner for the race.

 It was pretty cool-- for the first time they've run the race 

here in Boise, they had over 7 thousand participants.

Not bad.

 The race track snaked around the fair grounds

and was filled with lots of families covered in

colored foam and bubbles.

 Case in point-  here's Holland along with two other friends.

And they were just the volunteers.

 I think everyone got drenched and dyed.

 If not running through the "bubble bogs" in the race...

certainly at the end when they had a field of foam

they launched out over everyone and everything.

 It was a blast.

We came home tired and happy.

Oh, one more thing.

This is what Greer unwrapped from her family.

Can you guess what her present is?

It is all she wanted and my husband (aka MacGyver)

built a top notch- much higher quality one than we could get on line...

drum roll please...

Zip Line.

 It goes at least 200 feet across our upper yard.

And hasn't stopped being used since he put it together

Saturday afternoon.

 Even Kean is addicted to the speed.

That's him on  Byron's lap.

Trust me, it's a bit scary the first time- stepping off at the top

but once you go, you want to go again and again.

Decision Day

How can this be?

How can so much time have passed since my last post.

I'm a slacker for sure.

Actually, things have been crazy busy.

I just got back from meeting with our Baldapalooza Executive Director

and some of the key staff at Camp Rainbow Gold.

We are not doing a big Baldapalooza event this year

but we are producing some of a huge Camp event this fall

that is gonna be "epic".  Trust me.

 I snapped this picture of Kean and Reese waiting for the bus this morning.

I think I left a lot of you hanging with our last blood work nearly a month ago.

One of Kean's white blood cell counts is sky high.

We've spent the past few weeks consulting with doctors,

running some tests and finally last week, I threw down the towel

and said we would stop all the testing until February 29th (next Monday)

when Kean goes back in for his regular screens and testing.

I feel like we need to see if it was a fluke (hopefully) or if we are 

heading in a higher or lower direction.  That way we can be more

educated and strategic in our testing.

So tune in next week for decision day.  

Geez, that sounded like a plug for the elections.  Yuk.

Disney Idaho

Lucky boy.

Kean had a play date yesterday with our friend Colleen Riggs

while I had my first board meeting for Baldapalooza.

We are determined to go to the next level.  We've pulled

together an impressive group of men and women to serve

on our board and ratified our legal paperwork to become

a 501c3 non profit.

We also played our new video we will be using to gather support.

It tells the story of Kean and how Balda got its start.

It is on our website at:

http://baldapalooza.org/

As I mentioned, Kean had such fun.

His day started off a bit rough.

He, for the first time, didn't want to go to school

and his aid texted me about 45 minutes into their day

telling me that Kean just wanted to sprawl out on the floor

underneath a table and rest.

I guess he pulled it together because I never heard back

from his aid after she said let's give him a little more time to come around.

You'd  never know he was in a sour mood

by looking at these pictures.

Colleen said he was wonderful.

And who wouldn't be.

An afternoon with her is almost up there with Disneyland.

She took him to McDonald's for lunch (where I'm told

he had a grand time dipping everything in his sauce-- his

McNuggets, his fingers, his straw)!

 Then it was off to the library where he made friends with

the statues out front.

I can't tell you how much I love these pictures.

It is as if he is trying to get the little girl to get that mouth 

in gear and get reading to him!

Then it was back to her house for a four wheeler ride

(I'm sure he's in love) and a visit with the horses.

What a day-

and what a night.

He slept great!!!

Captured

My friend Fabiana is one talented woman.

She shot the family portrait on this blog

and somehow got all of us to look pleasant all at once!

She photographed 21 of the 22 children for our Hall

of Heroes project

and she was by my side or near by for much of Baldapalooza.

I had to share this beautiful shot she took of Andy Grammer on stage.

 Guess you've heard the big news announced today that he was 

supposed to have announced from our stage on Saturday.

Andy will be one of the celebrity participants on this season's

Dancing With the Stars.

Expect to see a lot of video of Andy on the show from his

trip here.

He had a two camera/four person crew from the show following his every move.

But once again, it was my friend Fabiana who captured what was one of the

sweetest moments for our family from the night.

My Dream

Honestly, I don't even have the words

(I know, shocking) to begin to describe how Baldapalooza turned out.

It was dream like-- magical-- everything I have always hoped it would be.

The weather held (we even had two rainbows in our honor),

the people came in droves and other than a few blips-- it

went so well.

No, that's not accurate.

It was beautiful.  I'll never be able to describe it.

Just let me say, if you weren't there- you really missed

out on something incredible.

I was so insanely busy all day that I took only a handful of pictures.

Baldapalooza photos are all over social media though

(my Facebook page has lots I was tagged on).

But here are just a few--

our family with Andy Grammer.

 Holland was hanging with her friends and barely made it in

to meet him.

By the way, Andy is wonderful.  When I first met him

in the afternoon, he told me he was a hugger-- I think I 

got about six hugs from him by the end of the event (and the 

nicest message as he got on a plane this morning to leave Boise).

He was perfect for Baldapalooza-- kind, engaging, oh, so talented

and a phenomenal performer.

I have to say though, my favorite part of the day took place away

from Balda (and at our second home-- St. Luke's Children's Hospital).

We took Andy down to visit the rooms of  7 cancer children

who were too sick to attend Baldapalooza.

In every room Andy sang his heart out, charmed the children

and then signed the most beautiful pillows my friend Cindy Maliwauki

made for each of the kids.

The pillows had a few lyrics from his song "You Gotta Keep

Your Head up".

This little girl stole all of our hearts, especially Andy's.

Andy's mother died of cancer and it sure seemed our

efforts truly resonated with him.

The whole night was such a sweet and tender experience.

We took Kean up on stage to thank everyone for supporting

what he started.

It is kind of cool.  He is a total rock star and yet has no earthly idea.

A first-- a rock star with no ego!

We ended the night with tradition.

Andy was joined on stage by a few of our other artists

and by the 50 member top choir from Eagle High School

to sing Rufus Wainwrights' Hallelujah.

We were one of 15 cancer families to light giant paper lanterns

and release then into the sky.

It was spectacular and emotional.

I could easily go on and on.

But in that I don't have any other pictures to help describe the event, I'll head to bed

and hope I can sleep this night.  Too excited for much of that last night.

We should know this week what the final numbers are

as far as attendance (we think close to 4 thousand) and how 

much we raised for our beloved Camp Rainbow Gold!
p.s.
Here is a link to our local NBC's station's live coverage.
They actually LED with the story!
http://www.ktvb.com/story/news/local/2015/08/30/baldapalooza-camp-rainbow-gold/71408380/

Listen Up!

Okay, we are in crunch time.

Baldapalooza is this Saturday

(get your tickets now they go up at the gate:

 www.baldapalooza.org).

This week has been a whirlwind

trying to keep up with life and do our media blitz.

Last night our local NBC station did

a beautiful story on our Hall of Heroes

(what our first Baldapalooza raised money for).

Trust me, it is worth watching-- you'll totally understand

why we kill ourselves off for this event.

http://www.ktvb.com/story/news/local/outreach/sevens-hero/2015/08/26/wall--heroes-gives-hope--families-fighting-cancer/32365161/

And then this morning, I should say, well before 

the sun came up, I went on our local ABC station

to talk about Balda.

 This time, I got to be on with the Runaway Hamsters.

Triplets and an older sister who had a hit with a song 

they wrote for a classmate fighting cancer.

These cuties will be our very first act after the gates open.

Thankfully, my mom came over to get the girls off to school

and love on Kean.

Somehow, she even got him to eat a little bit.

Good thing, since I failed to get him to eat much the rest of today.

I wish he could understand that this is the last week (we hope)

he will feel this ultra lousy.

18 days left, 18 days.

A Hot Mess

I am so far behind on my posts thanks to how busy Baldapalooza

is keeping me.

I can't not document that we had our last day with our dearest Maureen--

Kean's Occupational Therapist.

She's been a huge part of our family-- been coming to our home

for years (since Kean was a baby).

 In fact, some of you may remember, Kean called Maureen

"Mama" at least twice before he said it to me.

And I was fine with that.  Maureen is very much like a Mom

to all of us.  Byron even christened her "Mama Gump"

after she had Kean put in leg braces.

And it stuck.  We all love our Mama Gump

and will miss her coming to our home each week.

 I told you Baldapalooza was keeping me running.

Friday morning, oh how lucky, I got to get up before the sun

and be at Scentsy, our venue, at 4 a.m. for 24 live shots

with the local NBC weatherman.

That's Elizabeth Lizberg, the head of Camp Rainbow Gold

(the organization we are raising money for).

 In spite of the vampire hours, we got a lot of paper work

preparation done-- and had fun with this group.

 Then it was run, run, run-- had to get Greer and Reese

registered and then... are you sitting down?

I had to go register Kean

for Kindergarten

at a new school. 

Okay, so it was kinda creepy that I was likely the only

parent in the school without a child by my side.

Even though school starts Monday, Kean won't go until

mid-September (after he finishes Chemo).

I think he will adore his Kindergarten teacher:

Mrs. Hymas.

 And this is Mrs. Baker-- she is over special ed and will

be his one on one aid.

I was also quite relieved to recognize a couple of cute

little Kindergartners.  My cousin's daughter is in the class-- 

as is this munchkin-- she goes to our church and has been

over to the house twice to play with Kean as we prepare him

for school.

My dear friend Pam went with me-

first, to help me get through the day.

Second, so I wouldn't be by myself.

And third, to take pictures of everything.

We are going to make Kean a book with pictures of his class,

teacher, aid, cubby etc. to try and prepare him as much as possible.

Too bad, a little picture book cant help prepare this

mom for her baby to go to school on his own.

I can guarantee I will be a hot mess come September 14th!

A Little Media & A Little Methotrexate

The media machine is about to kick in full force.

We are about a week and a half away from Baldapalooza

and we have lots of coverage blitzing the airwaves

from here on out.

Today, darling Maggie O'Mara from channel 7

interviewed us at St. Luke's about the Hall of Heroes

that will soon grace the halls.

 One of our cute cancer families was part of it.

That's 8 year old Shae who had -- no exaggeration-- about 50

lymph nodes removed from her neck after getting diagnosed

with Stage 3 Melanoma.

The story airs next Tuesday night -- all 22 of our Hall of Heroes kids

will be Seven's Heroes.

 Kean didn't get a nap today and took his yucky Methotrexate

(so of course, now he won't eat)!

 Poor kid couldn't stay awake while I made

the dinner he wouldn't even taste.

Sigh...

We'll give food a try again tomorrow.