Rejuvenated!

I've been "off grid" for the past few days... because we escaped!  My parents took Keanut

for a long weekend and we took the girls camping!

Our first get-away with the girls since Kean got sick.

We found this great little place near Featherville...

 with lots of hot springs,

huge Yellow Pines...

 and some great hiking trails.

 Reese talked us into going off trail and nearly straight up the mountain to

"Pride Rock" (to get this, you had to have seen Lion King).

 I swear it was way steeper than it looks but we survived and had a great hike.

We were supposed to meet our friends the Allen's up there... but they bailed on us

when some of them got sick.

We ended up making some great new friends at the hot springs...

they came back to our camp for dinner.

This is Byron teaching 2 year old Gemma how to roast the perfect marshmallow for s'mores.

 Mother and Daughter-- Therese and Melissa are both nurses.

Therese used to work in the adult Cancer ward-- small world.

 This morning, Byron took the girls on a hike while I spoiled myself with a book.

They found a whole slew of natural hot springs...

 and clearly had the time of their life.

Kean was a near angel for my folks.

My dad said they'd like to keep him...

but oh, did I ever miss my boy.

Our reunion was sweet.

He about jumped out of his clothes with excitement when he saw us!

Love, love, love that kiddo.

Tinkerbell and Pickles

Lunch... well, make that any meal around here is always a crap shoot.

Today we tried mac and cheese -- no.

Cottage Cheese:  two bites

Greek Yogurt:  two bites

Fish Sticks (the good ones from Costco):  8 bites (before spewing the next few bites on the floor).

Dill Pickle:  Jackpot!!!

Who knew?

Actually, the hospital Dietitian did.

She suggested the dill pickle juice would counter the metallic taste from the Chemo.

And just so nobody gets alarmed and sends me messages wondering if all is okay....

I will not be posting for the next few days.

I'll hope to be back in the saddle on Sunday.

For now though, if you have an itch to throw your support behind Team Kean...

I got an email from a friend of a friend who is running a half Marathon I believe at

Disneyland called the Tinkerbell Challenge.

She's running on behalf of Keanut and another child hit with Cancer.

Here's her f/b page.

https://www.facebook.com/sarahgorringe

Have a great weekend everyone!!!

Mister Miracle Does Not Disappoint!

Everyone who comes over to the house has been pleasantly surprised to see how happy and healthy Kean looks.

He's surprised all of us too with how well he's doing.

I don't know if you remember but when he was first diagnosed and we were in the hospital freaked

out of our minds... our old Bishop from church, Ken Firmage came up to St. Luke's and gave both

Byron and I blessings.

In our religion, we believe the person giving the blessing is serving as an intermediary

and the words of hope and comfort are coming from the Lord.

In the blessing I was given, I was told Kean would "surprise the doctors with how well he handles his treatment".

Ladies and Gentlemen, we are seeing that come true.



 On Monday when we were down at the hospital getting his most recent doses of Chemo, we ran

into one of his four Pediatric Oncologists, Dr. Meeker.

Two of the other doctors had told me to plan on spending all of November and December

in the hospital since Kean will be going through the dreaded Phase 4 (Delayed Intensification).

I was asking Dr. Meeker what we should expect...whether Kean will be really sick and miserable

or if his counts will just be so low he will have to be isolated.

And guess what he told me-- he said the reason why the other doctors said to plan on being

in the hospital for all that time is because the last few Down syndrome kids they've had

have not done well at all on the Chemo (especially Phase 4).

BUT... since Kean was doing so well, we just might not be in all that much!

Now, I'm not getting my hopes up... but let's be real here.

The boy is a rock star.

He's a fighter, a "tropper" and a miracle.

Blessed

You might think I'm crazy to make this statement... but in some ways, Kean getting Cancer

has been a blessing.

We have been flooded with support, prayers on our behalf and an outpouring of love.

I think I once said, if you ever want to know how loved you are

go through something like this.

On second thought, just call me up and I'll tell you how loved you are!

Take a look at what arrived in the mail today.

It is a bracelet sent from my dear friend Elizabeth Cluff in Arizona.

Her husband, Mitch is one of Byron's best friends.

Liz struggled through a horrendous bout of Breast Cancer and all its horrific side effects.

We prayed for her and followed her journey and watched in awe as she emerged from her battle

wise, compassionate and strong beyond her years.

The words on the bracelet aren't easy to read in the picture but they say things like:

sow love, believe, faith, plant peace, give back, lead the way... 

 More love came our way today at our local pharmacy in Eagle;  Customedica.

The owner, Shah came out with Kean's medicine and this basket of scrumptious fruit.

I think Kean must feel all that love instead of feeling icky.

Once again, he has surprised us with how well he is handling his doses of Chemo.

Yes, we are truly blessed.

Off To the Hospital We Go...



We survived another day of Chemo.

This one seemed awfully long.

We had a lot of those waiting around periods...

waiting around to be seen, to see the doc, to get blood results etc.

As always, getting blood is quite the production.

There's the vampire, oops, I mean nurse who takes the blood,

the child life specialists who always blows bubbles and help me sing songs

to keep him entertained, distracted and still... and my good friend Elly came today.

They surprised Keanut with a present. 

Evidently, a Boy Scout did some kind of Eagle Project where he gathered toys for the children in

the Cancer unit.  He had just so happened to see the story on TV about Kean and

asked the nurses to specifically set a toy aside for our boy.

Isn't that sweet?

He got the cutest set of musical instruments:  a tambourine, maracas,

a xylophone etc.

 With all the waiting around, it was quite the blessing.

So his numbers came back surprisingly low.

The Chemo protocol he is on calls for them to up the dosage each time.

Since his numbers looked so bad, after much research and discussion, they decided

to give him the same dose as last time.

We were relieved he at least got to get his dose.

He also lost some weight... not enough that they are worried (unless it turns into a trend)

but I did have to meet with the Dietitian today to discuss ways to fatten him up.

It was sure helpful to have Elly along.

Wrangling Kean for hours-- it's nice to have a partner!

I'm staying on top of his anti nausea medication and so far tonight, he's doing pretty good.

Keep those fingers and toes crossed!

Out and In

Byron and I are paying for it today.

We acted like teenagers and stayed out late last night.

We double dated with our fabulously fun friends, the Borup's

and went to see Les Miserables.

It was wonderful!

Wonderful to be out on a date.

Wonderful not to worry about the kids (my mom watched 'em).

Wonderful to run into so many friends.

Wonderful to be entertained and escape into the world of top rate theatre.

Thank you Borup's!!!!

Since today was Sunday, Byron stayed home with Kean while

I took the girls to church.

The girls thought it was pretty funny to dress Kean up in Greer's dress

while they were getting ready.



 Clearly, he didn't find it as humorous as they did.

After church, we all met at my folks house to eat and hear the high lights of

her trip to Russia and Turkey.

 Kean wasn't the best listener... but did find some of the brochures

she brought home-- absolutely fascinating.

 Grammy brought home fun trinkets for the kiddos.

My mom told the girls the head dress Holland is wearing is what the Russian Tsarina's wore.

Holland took that a bit too seriously and pranced around for a while looking at us all quite haughtily.

 Here's my favorite item she brought home--- a little Russian hat for Kean.

The girls decided he looked like a bell hop.

Big day tomorrow.

Two rounds of Chemo at the hospital.

This time, my friend Elly is going with me to help keep Keanut entertained.

Hopefully, it will be a breeze.

Yearnings...

Saturdays can be a bit rough on the boy.

That's because usually Saturday is the day Byron is out working on the yard:  mowing, weed eating, leaf blowing etc.

The minute Kean hears the ol' lawn mower fire up... he heads over to the window and starts knocking and pointing.

 Poor guy.  He loves to be outside.

He loves to sit on the lawn mower and ride around with his pops.

But with all the forest fires so close in the mountains, our little valley's air is gross-ola.

Can you tell how soupy it is?

Try explaining that to the boy.

Lucky for me, he's easily distracted.

Food For Thought

Let's talk turkey and lasagna and pizza and everything else under the sun.

If you've followed this blog, you know that getting Kean to eat has been

quite the drama. 

We narrowly avoided the feeding tube (the doctor said "for now")...

and now he will eat if-- and that's a big if ... I can just figure out what

in the world he wants.

Some days he gobbles up eggs and cheese.

Other days he will spit them out after only one bite -- usually at Reese because she sits next to him.

And poor Reese has become so used to it, she hardly whines at all.

So back to Kean. 

The docs have him on a high calorie, high fat diet.

I assume it is because the forecasted sores coming to his mouth will cut down on his eating

or the next phase will be tough to keep weight on him.

Who knows... but they've had me meet a few times with Dietitians and have given me instructions

and recipes that you swear come from some greasy spoon in the South.

I'll cook him eggs in butter and smother them in cheddar cheese

or I'll make him a milk shake with ice cream, fresh fruit and added whole cream--

none of that half and half stuff.

And here's the problem.

And it's a big one.

Much of the time, he'll take a few bites

and of course, since I've gone to all this work to make such a wicked creation...

I can't stand to let it got to waste

(plus darn it, it's just so good)...

So guess who's gaining weight?

Arghhh!

I thought you'd enjoy today's pictures.

Quite often Byron and his brother, Craig will

stop in to eat lunch.

Kean has become quite obsessed with Uncle Craig's lunch cooler.



 Who can blame him.

Aren't most kids wired to like every body's lunch but their own?



A Blast From the Past

Kean and I had quite the morning.

My best friend from college, Camille Harris Taylor spent the morning with us.

She and her husband are on what they call their "save the marriage tour"-- it is their wedding

anniversary and each year they go somewhere fun.

This year-- the Oregon Coast with a drive through the Boise area and a visit to meet Keanut.

It was wonderful.



My dear friend Danielle Bingham came over and sat while Keanut napped so I could run some

much needed errands.

Danielle, in case you didn't know is the same friend who spent several months coming to my house

every Sunday so I could sneak in an hour of church clear back in the days when Kean was a baby, just

home from NICU and on house arrest.

Ah, those were the days.

I now look back at them as practice!

 I'm planning an upcoming and very illuminating post about Kean's crazy eating habits.

But for now, let's just say he usually will have nothing to do with cookies, ice cream, brownies or fruit.

Anything sweet is still on his hit list... or perhaps I should say his who can I hit as I throw it list.

I even tried an Oreo cookie yesterday.

He just spit it out.

But tonight, for some crazy reason, he decided he liked Oreos.

And oh, did he like them!

Baths are done.

It's almost bed time and I'd thought you'd like a glimpse into

what "free time" at our house looks and sounds like!

Oh and super good news:  my mom, all of her sisters and my 94 year old Grandmother

made it home safe and sound from their trip to Russia and Turkey.

I guess they had an incredible trip and my amazing grandmother was such a novelty (or charmer),

she came home laden with gifts!

So glad they are back.

Phew!

Tuckered Out

Boy Wonder may look wonderful.

He may be full of smiles...

but boy, oh boy, I can tell he does not have any stamina.

Momma Gump came today for therapy and we were both

amazed at how he seems to be getting back physically to where he was

before he got sick.



 But then after naps, his new Physical Therapist (Katie) came and he did

okay for a little while... but then he just started losing gas fast

and his legs started shaking again.

We'll keep at it.

Our goal is to get him as far along as possible before he goes back into the

hospital for Phase 4 (November).

Meanwhile the girls are eeking out every last drop of summer.

Holland has mastered back flips on the trampoline

and not to be outdone, Reese is practicing and practicing this little trick.

If you visit, I promise you will be suckered into a show.

Ladies Who Lunch

Today was a great day.

Why you ask?

I had a group of my girlfriends come over to keep me company...

oh who are we kidding?  They came over to keep me from going insane.



They brought the yummiest salad, crusty bread, homemade chocolate chip/zucchini bread and

homemade cookies for lunch.

It was just like old times... good food, good friends and good conversation.

Even Mister Kean loved the company.

Alas, the hour or so was way too short.

But they've promised to try and do this twice a month.

Lucky me.

Lucky Kean.



Sunny With A Few Clouds...

I don't know who enjoys Kean's naps more--- Momma or Keanut.

He fought and fought the nap thing yesterday and by about 7 p.m. he was Cranky with a capital Crank!

But, ah, today, we were back on schedule.



 The little guy woke up all smiles.

 He is truly surprising me with how well he is doing - health-wise.

His hair is looking nappier (pun intended) every day.

And we did have two bouts of the runs today and one vomiting episode yesterday...

but really, it is all quite manageable.

Team Kean is hanging tough!

Jam Packed

I'm over at my dad's house-- using his Internet, since Qwest said ours could be down 2 to 4 days.  Argh!

Kean makes himself right at home here. 

 Don't know if I've told you he has mastered the "Mowgli" walk.

 His favorite thing to do, is crawl up the stairs (yes, he's plenty strong enough to do it now)

and play Tarzan--- yelling to all of us below.

 The big headline around these parts is that Reesey finally lost her first tooth.

Her tooth decided to make its grand exit just as Byron and I were leaving to go out on our first date in months.

By the way, she lost it and then she really lost it.

She had to write a letter to the Tooth Fairy when we got home last night.

 We joined up with our good friends, Mark and Caleen Borup and Duane and Colleen Riggs.

We all went biking along the Boise River Greenbelt...

 where Mark, clearly having to out-do everyone, rode through this fountain and wiped out in spectacular fashion.

He was soaked... but unhurt.

 I think dinner might have been a bit chilly for him...

but we laughed and laughed.

I swear, more than we've done in months.

It was such fun.

 After dinner, we rode our bikes to our favorite ice cream shop for milkshakes.

 I'm sure we were quite the sight... all of us riding our bikes, ringing our bells and laughing hysterically.

We have dubbed our tough little biker gang... the Sliderz.

Whaddya think?



Be Patient

Qwest is digging some new fiber optic lines up near our house and for now our Internet is spotty at best.
Rather than lose five years off my life trying to load pictures and post-- I want you to know all is well
at home.  I'll try to post tomorrow or the next day.  Got some great pictures.....

So Far So Good

Clearly, the doctor gave me the worst case scenario yesterday.  Because, as of tonight,

we haven't seen any vomiting.  Keanut is hanging tough.  He's a bit edgy but doing much

better than I had expected.  I do know, they'll ramp up the doses of Chemo with each IV, so

we could have up-chucking in our future.  But as of now, I think we've dodged it this time around.

 Kean's sisters are quite the entertainers.  They love to dress up and

put on shows.  That's our neighbor in the rock star get up.

 Reese told me this morning that she didn't like school.

She said it's much too hard, compared to Kindergarten

and the bigger issue is she doesn't like being away from Mommy and Kean all day!

Keep in mind, this is the same girl who tells us weekly that

she is never going to get married because she

wants to live with Mommy, Daddy and Kean

forever.