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.

The Long Awaited Day

Talk about life being totally surreal.

Kean had his FINAL heavy Chemo at the hospital today.

When he was diagnosed three plus years ago, I couldn't even

fathom this day.

I'm not sure I still do.

(For those of you who thought we already had his last big

sedated Chemo-- my fault.-- I counted months instead of weeks.

Kean had two in June and that left us with the big sedation Chemo

where they put it in his brain and spine).

I guess we had to go out with a bang.

He still has until September 13th to take two different types of Chemo

at home.

But today was the last super, duper, ugly one at the hospital.

It was only fitting that Elly Moomey was our Chemo date.

She was with us on the first day (she came to take pages and pages

of notes when he was first diagnosed-- as Byron and I were in total shock).

 We had about as perfect a day as could be.

Kean's port actually cooperated and gave up blood

without any singing, dancing or extra medicine.

 When we headed up to PICU, we scored with the "A Team"--

our favorite Oncologist, Dr. Meeker, our favorite Intensivist, Dr. Derek

and one of our favorite nurses-- Mary.

I made them take this picture before they did the procedure.

Kean had just gone under-- it looks like we are ignoring him--

but trust me, he's fine.

 All went with with the drugs, Kean got a good snooze...

 and he woke up starving and ready for bacon, bacon, bacon

(since he had to fast).

 The boy was feeling pretty good when we left-

even blowing kisses to the nurses in the Pediatric

Intensive Care Unit.

I tell ya, he's a heart breaker.

What is so crazy is that the next time we go back

it will be to check his blood and counts only.

No Chemo.

I'm not sure we will know what to do with ourselves.

They told us they'll have his little ceremony and celebration

of finishing then.

Who would have ever thought we'd survive to this point.

I know I had my moments.

Fake Snores

I know today is National Post Your Kids Back to School Picture Day.

Guess I'll jump on the bandwagon.

 I really don't know where this one gets her energy.

She started high school today-

her first class?  6:15 a.m.

And she's attending that specialized medical high school.

We will see how long she can keep up this care free look, eh?

Reese is in 4th this year (she's such a cutie pie.  Only in the 

3rd percentile for height for her age.  We sure ran out of gas 

with this one).  We constantly tell her "small but mighty".

And Greer is our tall willowy child-- starting 7th grade.

After we got the girls on the bus, we revived our tradition of taking

the newspaper into our neighbors, Grandpa and Grandma Bodily.

Kean was a hoot.

He carried the paper in, dropped in on the table, headed to 

the kitchen, helped himself to some yogurt in the fridge,

asked Grandma for some toast and orange juice

and then settled in to eat.

While I cleaned up his dishes, he and Grandpa Bodily headed

upstairs to check on the stock market.

Only Kean took a slight detour

and headed for their bedroom!!!

 He tucked himself in, started snoring and then grabbed their

bedside phone and pretended to call his grandma.

I tell you he was on one!

 We also had a belated birthday celebration. The Bodily's

kept to tradition and gave him two packages of bacon.

Perfect timing.  He has HEAVY Chemo tomorrow

and starts up again on Steroids.

 His adventures didn't stop there.

Andrea (his Physical Therapist) officially ended last week

but came by today with her toddler to go with us on a little spin.

For the first time, Kean was able to really pedal his little

therapy bike by himself.

Of course, it didn't last too long-- he was more

focused on keeping an eye on Julia.

Finally, ahem, may I have your attention please?

Kean's final hospital Chemotherapy

(the yucky one where they put it in his brain and spine)

is scheduled for tomorrow.  Once we get over that hurdle,

we just have Chemo every night at home until September 13th.

The light at the end of the tunnel is almost in reach!!!

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.

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"!

So Not Dullsville

I don't think we know how to have dull moments around here.

The past few days, we've had the cousins in town from Texas.

So it's been lots of games...

 and giggles crammed into a short amount of time.

 The older girls all got up and went to the temple

early Friday... and did swimming and sliding 

in the afternoon.

Kean has kept us on our toes.

As usual.

He's been on heavy antibiotics for that sore throat

but still won't eat.

And he's got a lovely rash on his face that has kept me worrying.

 Tonight we finally figured out that it looks like he has Thrush in his mouth--

a side effect from the antibiotics.  So now he's on another

new drug to clear up the problem from the old drug.

Can't wait for our home pharmacy to be closed

or at least pared way down!!!

Oh and just to keep things interesting, I got stung by a yellow jacket

on Thursday.  Tonight, Saturday night, the swelling, redness

and heat in my arm is finally settling down.

I guess I can't double for Quasimodo anymore.

As I said, we don't do dull.

So This Happened....

How many of your remember that famous line

(uttered over and over again) from the TV show

Sanford and Son:  "I'm coming Elizabeth"!

That's how I felt today when I took Holland

to register for HIGH SCHOOL!

 Actually, it wasn't too tortuous.

Remember, she is going to that small medical high school

(the nerd school as we call it).

Anyway, it was great-- small, friendly, do-able.

It was when we had to stop at our neighborhood high school

and get her an activity card for sports

that I started hyperventilating.

I kid you not-- there were some boys there who looked

like they were in their 30's or at least running a prison gang.

And don't get me started on what some of the girls were

wearing....

Hello Hollywood!

I tell ya.

This boy.

Kean will be starring on the news again.

We got interviewed

this morning by the local ABC station (Spencer Blake)

about Kean going back to school while very behind on his

immunizations due to his cancer.

We don't have an air date but will let you know when we know.

 Then this afternoon, Kean's "birthday week" continued.

Elly and Ron Moomey brought over a present.

 And boy, oh boy, did Kean have a grand time

unwrapping this one.

 Elly bought him some back to school clothes.

 And of course, we had to have him try the clothes on

and model.

I totally think he's ready for GAP.

 I don't know about you, but I think he's ready.

We just have to get this last month of Chemo behind him

so he can go. to. school!