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.

BarkerBerry Jam

If you have read this post with any regularity, you'll remember

the early mornings the girls spent all summer picking

Blackberries.

 We saved some and the girls dug into their piggy banks 

to buy some Huckleberries from Montana

and guess what we made?

Jars of Barkerberry Jam.

 Trust me, it is luscious.

The girls are selling some of the jars--

$12.50 a jar (12 ounces of pure heaven) plus shipping if you are out of town.

As always, the money they raise goes to take Kean

to Disneyland when he is done with Chemo.

The Motherlode

Oh, we had one very happy boy this evening.

 When I told him Motorcycle Jeff was here to take him on a ride,

he just giggled.

 We picked more blackberries this morning (with my mom

and Pam Brown's help).  So get this, we have now picked

just over 160 gallons of berries and we still have a few weeks

of picking to go!!!!

Crazy, crazy, crazy.

Where are all these berries coming from?

Clearly, this little guy is not eating his share!

Reese was so excited to take his picture as he sat on the screen outside our kitchen.

Snuggle Bunnies

I am so ready to retire.

I spent most of my entire day running the girls Blackberry empire for them.

We picked and sold 35 gallons today.

And let me tell ya, that's a lot of berries!

Here's the sad part of this story-- we still have three rows that need picking.

Ug.

 Holland did me a favor today and put Kean down for a nap.

She never came down and it was awfully quiet up there....

Two cute kids snug in a crib.

Wouldn't have thought I'd find her there

but so glad I did.

The Bandaid

We had a tiny vacation from Kean feeling and acting completely miserable.

He had horse therapy this morning

and the entire time he was on Romeo.. he was happy and content

oh, and don't forget smiling.

 This momma sure got a work out.

I don't know what it is about speed-- whether motorcycles

or horses -- but the boy loves to go.

 Candice, her daughter and I just did our best to run alongside Romeo

and keep up with our little cowboy.

 This afternoon, while Mister Bronco took a nap, my new neighbor, Shelley

came over to learn how to make jam.

We made four batches of blackberry and apricot.

Yum!

A Labor of Love (Yum)!

Our Labor Day was spent laboring over the last of our blackberries.

Holland wanted to learn how to make blackberry jam.

And with three overflowing buckets of berries, we had our work cut out for us.

 Between smashing berries...

 and then boiling, boiling and boiling...

Holland worked up quite the sweat and we both had little purple splatters

all over us (and the kitchen).

 But our Labor Day labors were worth it.

We got -- count 'em -- 39 small jars of the gooey stuff.

Yumolah!

 Sweet Greer offered to keep Keanut entertained while we worked.

She put together an entire pre-school program

that included coloring and music time.

She even made him this snazzy sticker laden folder to put "all" his art work in.

Only problem is... he wanted nothing to do with stickers, folders, dancing or coloring.

Oh, and check out the little name tag Greer put on the back of his shirt.

(To help her keep his name straight with all the other imaginary kiddos she was watching today)!

 

Silver Linings and Purple Stained Hands

Mister Crankypants still doesn't feel great.  But he's a whole lot better than

he was the other night.  So for that, I'm thankful.

Greer took this picture today on her ipod and gushed about it being the cutest ever.

Personally, I think with his blotchy red face, it makes Kean look like he's been

nipping at the liquor!  He goes back on Steroids on Tuesday

so all this teenage acne stuff should once again start clearing up.

I guess here's my proof if one searches hard enough, one can find a silver lining to almost anything.

I hate, hate, hate those blasted Steroids but they do work wonders on his face.

 We got up with the sun this morning to pick blackberries before

it got too hot.  Reese... bless her sweet soul, bundled up in her

winter ski jacket.  Wish I would've gotten a picture of that spectacle.

It did get into the 90's today.

 We picked 10 1/2 gallons this morning.

I'm a bit worried.  This is only our second real picking

with many more to come.

Please let me know if you want some of the girls' Barker Berries.

Otherwise, I'm gonna have to get pretty creative about

what to do with all these berries.

Plowing Forward

Ah.... routine.  Love it.

Day two of school went much better.

The bus wasn't quite as late.

Holland successfully tackled her locker combination

and Reese and Greer came home all smiles.

Tired, but smiling.

I think they are pining away for the glory days of summer.

And man, have they been glorious.

Last Saturday was what we around here call "Mary K Day".

For years, Mary K has taken the girls out for their birthdays and spoiled them rotten.

This year was Reese's first year to get to go-- and Mary K took them all

to the fair.



 They did it all... rides, cotton candy, fried food and games.

 She's not only a good sport-- she's a saint in my eyes

and in the eyes of the girls?  She's beyond a saint... she walks on water.

And has earned coolest adult in the universe status.

As for Keanut... he had another good day.  The gap on his incision has scabbed over

so I'm hoping it won't be a big deal when he is checked over at the hospital tomorrow.

He is scheduled for another Spinal Tap and dose of Chemo in the morning.

It should be the last one in this phase they call "Consolidation".

Since we have procedures and Chemo on Thursdays, I've noticed Kean's best days are Wednesdays.

Momma Gump, his favorite therapist came today and he did great... he's really starting to put weight on

those skinny little legs.  He also took a wild spin on his new bike.

The clicking noise you hear in the video are the blinkers on the bike.

It's a pretty cool ride.

And here's what I did today, while the boy took a nap.

I bottled up and made jam out of the blackberries and the raspberries from our garden.

It's so nice to have a good day.

P.S.  I think Byron has the flu.

He's staying quarantined in our room.  Cross your fingers it is short lived and not contagious.

Changing It Up

Just to keep me on my toes, Kean has gone from Olympic power eating to eating like a bird.

The docs had warned me this would likely happen. But how strange to now worry about whether he

is getting enough to eat after the gorge-fest we've gone through.

His therapist, Maureen (Momma Gump) was here this morning and we agreed the steroid swelling

in his face has gone down a bit.

 We also had a session with his brand new Physical Therapist, Katie (who I clearly failed to get a picture of).

I think we will really like Katie-- she got him to put a lot of weight back on those spindly legs.  But her coming is bittersweet for us-- it means we officially say goodbye to Pat, his PT who has been with him for the past two years.  Pat is part of our family and it will be hard (probably harder for me)

 to not see her or have her calming spirit in my home each week. 

Tomorrow we go back early, early to the hospital for Kean's weekly Spinal Tap.  The protocol he is on this month

calls for a weekly Spinal to put the Chemo drug- Methotrexate directly into his spine and brain.  This is the drug

Down syndrome kids don't assimilate, so Kean has to take another drug at precisely 48 and 60 hours after the Spinal.

So far, he seems to be tolerating it all.

He also gets another dose of Vinchristine-- this time through his brand spanking new port.

I have to put a numbing cream over his chest where the port is (under the skin) about an hour before we leave

for the hospital.  Once there, they will (thank heavens, not me) put a needle into his chest, right into the port to take some blood samples and later give him the Vinchristine.

I'll let you know how it goes.

Oh, one final note... we picked blackberries today.

They are winding down-- but the girls have made nearly $800 dollars this summer on the project.

Remember, half will go towards taking Keanut to Disneyland or somewhere fun when this Cancer business is all over

 and the other half will go

towards children's Cancer research.

This is what I made with the leftover berries....

Yes, Kean may have a problem with eating right now... but the rest of us will be making up for him.