False Alarm

Well we sure had another doozy of a morning.

Kean woke up at dark-thirty again.... and wouldn't stop crying.

When he gets worked up, he starts gasping for air.

It wasn't pretty.

His mom is already hyper paranoid about every little twitch he makes.

So when she/I saw a dried bloody sore on his lip, I really started worrying...

in that it wasn't there when he went to bed the night before.

Between the constant crying and the lip sore, I figured we were off for another

staycation at St. Luke's.

I set the girls up for a self serve breakfast and got Kean calmed

down with a bottle... all the while mentally re-scheduling my day to head to the hospital.

Here's the thing, he drinks this chocolate flavored Pedia-sure and it usually

leaves a mess on his face.

So when I wiped off the milk on his mouth, guess what else wiped off-- the sore on his lip!!!

Now for the embarrassing part;  it was just a dried bloody booger.

Can you even begin to imagine the utter shame if I had dragged him all the way

down to the hospital over that!?!?!?!

Yikes.

I don't think I've ever been so happy to see a booger in my life.

Geez, what has happened to me?

I can't believe I just wrote that.

Anyway, Kean is still hanging tough.

He looks sick, he has little energy, but oh, I'd rather be home with him

not feeling well, than in a hospital with him not feeling well.

We've had a nice evening.

A friend of ours from church, Jonathan Riggs, spoiled us with pizza for dinner,

the two new little steers were delivered (silly Sadie isn't acting overjoyed to have company),

and the three girls went to see a movie with Dustin and Stephanie Simpson and their kids.

So Byron, Kean and I are just kickin' it.



 It is shocking at how quiet our house is with the girls taken out of the equation.

I have to admit, it is sooo nice.

Mad Cows and Crazy Boys

Kean was up with the sun this morning.  Make that well before the sun.

I tried getting him back to bed, finally gave up and headed downstairs to

make a big breakfast.

Crazy kid.  At 5:15 this morning, he kept pointing and grunting-- telling

me he wanted to go outside.

 Something must be in the air at our house.  Our one remaining cow, Sadie

(the other two boys have gone to that big freezer in the sky), went on a bender,

broke through our fence, headed down the road and broke into another

neighbor's corral to join his cows.

By the time Byron and four others got a rope around her and dragged her

home behind our truck-- she had pulled over about a thousand pounds

of the neighbor's fence!  Poor Byron came home covered in mud and manure.

 Mr. B sent Kean and I out to buy a harness for Miss Jailbreak.

Since Kean can't be around germy people and places, the lady in the store brought out

her harness choices to the parking lot and let me pay for one right there.

I swear, only in Idaho!

I felt like a virtuous drug dealer... trading money for a big baggie while sitting in my car.

By the way, tomorrow two new little boy cows are due to be dropped off at our house.

Hopefully, Sadie won't feel so horribly lonely and we won't have a repeat of this great escape.

As expected, Byron was too tuckered out to get the Christmas decorations down

from the attic... much to Reese's dismay.

To make up for it, the girls (including our neighbor Jaymie) each

decorated giant gingerbread men...

and as you can see... themselves.

As for Keanut, he's hanging in there.  He had a slight fever today

but it was gone by the time he woke up from his nap.

We are ten days into Phase four.  Fifty more to go.

Our Uninvited Guest

Byron dropped by for lunch today... and found this little guy trapped in our garage.

 The youngster hawk was too exhausted to fly out so had to get a bit of help from Mr. B.

Too bad the girls weren't home to see this.

I tell ya, there's never a dull moment at "Barker Park".

Kean had a pretty good morning but unfortunately went down hill as the day progressed.

He is sounding a bit hoarse... so I'm trying to not stress and hope he continues on his

rock star path.  Today is day 9 since we started the evil Phase 4 of Chemo.

The doctors told me it would take about 7 to 10 days to knock him down....

and since yesterday he had his best day in weeks... I'm hoping he'll keep

bucking the trends and continue to be Mr. Miracle.

We'll see.

No matter what, he's my hero, even when he looks this miserable.

I got a phone call today from an old friend who I have always admired.

Ross Farnsworth Jr. told me something that made me stop in my tracks.

I love it--- he said when you hear someone question why bad things happen to good people.

You tell them because good is not enough.

And he's right.

The main way we grow, progress and become better people

is when we are stretched and put through the refiners fire.

I have already experienced so many beautiful moments on this

painful journey.  I hope someday I can look back and be grateful

our family was given this trial. 

Go Figure

I tell ya, there is no rhyme or reason to this Chemo stuff.

After yesterday's double decker dose of Chemo, I thought for sure Kean would be

mis-er-a-ble today.

But he seemed to feel better today than he has felt in a week.



Kean and Byron play this little game every evening.

Mr. Barker asks Kean where he wants to go and

Kean points.  Byron walks in that direction, stops and asks again.

Kean then points.

This goes on and on... all the way through the house, up the stairs,

out the front door, down the steps, across the driveway to.......

yep, you guessed it.

To the motorcycle.

Feeling yucky has not dampened his desire to ride like the wind.

Chemo Schmemo

Well we survived another day of Chemo.

Kean was what I would describe as partly stormy.

His lungs made sure everyone knew we were there.

But he also had plenty of time where he was content.

Partly thanks to my friend Angie who came armed with a bag full of toys including

three little motorcycles-- whoopee.

 Why we didn't get pictures of Kean with the motorcycles... I don't know.

But here's a cute one of Angie.

 I remember the first day we went to the Cancer clinic and the other parents were

greeting all the nurses and secretaries by their first names.

I remember having this overwhelming realization that we'd be coming so often, we too, would

get to the point where we knew everyones' names.

We are there.

And we are even to the point, Kean gladly went to Anna and let her take him for a walk around

the clinic.

His favorite tour spot:  the eye wash station.

Smart boy... Anna ended up more wet than he did.

 When we were about done with his two rounds of Chemo (Vin Cristine and Doxorubicin)... guess

who popped in to say hello?  Our dearest buddy, Kendra.

We almost didn't recognize her with hair.

In case you need a refresher on the cast of characters in this blog:  Kendra

was our neighbor in the hospital.  She has the same kind of Cancer as Kean (A.L.L.) and during

 her last Spinal Tap with Methotrexate, she had a horrific reaction - a stroke-

and lost her ability to talk or move for about ten days.

Well, when we ran into her, she was about to go for that same Spinal Tap again-- the

first one since the "incident".  She seemed so brave.  If she was nervous, she didn't show it.

She and Kean have quite the connection and she has been the subject of many prayers in our home.

I can promise, she and Kean will be the subject of many more.

We are surrounded by such warriors.

Another Sunday

As you can see... no hard feeling between Reese and our little Hannibal Lecter.

Reese was right at it again... showing me how she is almost big enough to pick Kean up...

 And surprisingly, Kean didn't seem to mind.

Byron stayed home with the boy, while I took Reese to church.

Remember, Holland and Greer stayed overnight with their cousins.

When we got home, Byron told me in amazement that Kean had polished off

an entire can of Ravioli (save three bites).

Gotta love those Steroids.  Tonight was his last dose for now.

He gets a week off.

We went to my parents house for dinner.

I know this video is dark... but it is of my dad tickling Kean.

Kean's laugh gets me...

there is no better sound.

We are off to Chemo tomorrow.

One day closer to getting this over with, right?



Roid Rage

Phew.  Today we seemed to turn a corner.

Kean was not so absolutely miserable as he's been the past few days.

His Steroid rage has kicked in full force.  He gets frustrated and angry...

a side we only see of our sweet boy when he is on these darn drugs.

But we had plenty of moments of playtime today.

Thank heavens.

The all day rain kept poor Keanut from escaping the great indoors.



 No motorcycle rides today.

So our little angel boy either lashed out for the past three years of being smothered by Reese

or we can blame it on the Steroids... but today he full on bit Reese on the cheek when she was trying to hug him.

She will have a bruise!

 And I swear he had a look of satisfaction on his face after he did it.

Oh dear.

Our good friend Rachel Alderman is over right now... home from college for the holiday.

Holland and Greer are spending the night at their cousins... so they missed Rach.

Their loss.

This is the same Rachel who saved me while I was in the hospital with Kean over the summer.

She was the one who went shopping for me to buy birthday gifts for Reese.

She was the one who helped clean my house before we brought Kean home.

She was the one who played with the girls and made them feel so loved while their mom

was so distracted.

You can see why we love this girl.

Back in the Saddle

I think we'll go with "no rest for the weary" over "no rest for the wicked".

'Cause there's no way Keanut is wicked.  But oh, is he weary.

I know he just had a major dose of Chemo on Monday (one kind in his spine, two kinds in his port).

And today, they hit him again.

This time, with a new drug... Pegaspargase.

Here's Penny (I like to call her the Queen of the Chemo suite) getting Kean set up for his dose.

Don't you love how the nurses have to gown and glove up to administer this "poison" that is

supposed to make him better?

 Instead of getting another duck (each time they stick a needle in his chest), Penny gave him this cute bear today.

We've decided to name him Pokey.

Today's Chemo was quite the marathon.

The drug itself took an hour to administer.

Then Kean had to be watched for another two hours and have his vitals taken.

So let's just say we kept pretty busy trying to keep Mister Miserable entertained.

Today's Chemo date was my friend Kim Dumas.

 She certainly earned her stripes.

We sang songs, played with toys, watched a movie, splashed in the sink,

danced, spent almost an hour with Stephanie, the Music Therapist

listening to the guitar, singing and playing instruments and finally, we

fed him everything we could think of.

Remember, Keanut is back on Steroids.

We ordered pizza, mashed potatoes, fed Kean two bags of chips,

crackers, cookies, jello, juice, milk and phew, I think that was it.

And guess, what?

We get to go back on Monday for more Chemo and do it all over again!

As expected, Boy Wonder was Boy Pooped Out by the time we

got home and evening rolled around. 

 We knew this Phase 4 would be rough.  And it is.

But I am trying to keep focusing on the positive... and one of those

big positives is the fact we are home and not in the hospital.

And that we got to spend Thanksgiving with my folks, my grandmother and my brother Doug, his wife, Dana

and kids, Dana's parents and Melissa (Dana's best friend).

 As always, (and I think as required for the date), we ate way too much.

We thoroughly enjoyed each other...

and other than Kean being on and off miserable... it was a wonderful day.

My favorite part was what I hope becomes a new tradition.

Greer had each of us write on a card one thing we are grateful for this year.

She put them in a hat, drew them out one by one and had us guess the author.

I love how the Thanksgiving holiday makes us pause and ponder

what we are truly thankful for-- and then that full heart that comes

from being thankful, always makes us want to give and share our blessings with others.

I don't think Thanksgiving could have a more appropriate name.

Gratitude

If I could only open up my soul and show each of you the piece you have personally bandaged, patched or sewn up with your words of encouragement, your virtual hugs and the love you've sent.  On this Thanksgiving, I have a very full heart.
Today Kean was still uncomfortable and fussy all day.  I'm either getting comfortably numb (my nod to Pink Floyd) or as is truly the case, it didn't bother me as much today because I've been so buoyed up by my friends.
People constantly tell me they don't know how I am surviving... but I know.  I have a secret weapon-- my ever growing and awe inspiring group of friends.  You are all like oxygen when I feel I am suffocating.  Thank you, on this Thanksgiving for giving me and my family the gift of yourself.  Happy Thanksgiving everyone.

Counting My Blessings

Well today was a rough one.

If Phase 3 was the vomit/mouth sores phase...

perhaps Phase 4 will be known as the constantly hungry and constantly crying phase.

Or perhaps, it will be known as the phase where momma finally cracked.

This is really hard.  And yet, I should be so thankful that we are home and not

in the hospital for Thanksgiving.

Gotta keep focused.

Kean had two therapy sessions today.  It was a nice diversion from what I mentioned above.

 Neither Andrea (Kean's Physical Therapist), nor Momma Gump, his O.T. could get

Keanut to do much walking or working.  We were just happy to get him to

stand on his feet for some time-- and stare at himself.

 The poor boy was unhappy most of the day... his brightest spot

came when daddy got home and took him for a very short motorcycle ride.

If he could talk, he'd say it was way too short.

 We had a surprise visitor tonight... Mark Moomey is home from college.

Mark is like an older brother to the girls... he practically got mauled.

 Mark didn't take it personally that Kean wasn't so impressed.

Kean only seemed to be content watching his favorite little video.

Finally.  Finally he is asleep.

Today has been a particularly long day in an already overly long week.

Tomorrow has to be better, right?

We'll be surrounded by family and yes, we will all be together.

Happy Thanksgiving everyone.

We have so very much to be thankful for.

I have a long list I'm formulating... and it will start with

the fact we still have one very special little boy in our lives.

Food, Glorious Food...

We survived another day.

At least, that's about how I'm feeling.

Kean seemed to feel better as the day progressed.

And unlike the other days immediately following Chemo, this time,

Kean has actually had a bit of an appetite.

He only ate a few bites at breakfast...

and a few more at lunch... but here at dinnertime, he ate and ate.

Could be  most likely it is the fact he is now back on the ol' Steroids.

Twice a day for a week... he'll be taking the juice from the blue bottle with a

shot of chocolate syrup to try and disguise the bitter taste.

The doc said he will be on Steroids, then off, then on for much of this new phase.

But since it is not so constant, we shouldn't expect to see the return of Buddha Baby.

Remember this guy?

Hard to believe they are the same child!!!!!

Reese had a dentist appointment today to deal with her first cavities ever.

She was really quite brave.  Perhaps it had something to do with the

fact Dr. Meadors gave her laughing gas.

On the way home, she asked me why he didn't give her any shots!

Too bad Kean can't have laughing gas every time I have to give him his belly shots.

 At the end of her dental session, Reese got to pick from a big tray of toys.

She picked out this little guy... a plastic lizard to take home to her brave baby brother.

I don't know how I got such sweet girls... but boy am I thankful for them.

Move Over Matterhorn...

I tell ya, Disney's best roller coasters have nothin' on our last 24 hours.

Remember last night's post... about Kean being happy and ready for today?

Forget that!

Two hours after I put him to bed, he woke up wheezing.

I gave him a breathing treatment and he seemed a bit better.

He went to sleep.

I stayed awake.

Listening and tensing over every cough and wheeze.

He woke up again a little after two.

and let's just say it wasn't pretty.

Neither was I, as I ran out the door sans hair combed or teeth brushed.

This is what he looked like in the Emergency Room.

 Several hours later and after a breathing treatment and a steroid shot to the thigh (which he hated),

the E.R. docs told us it was the 4th case of Croup they'd seen that night.

We got home at 5 a.m., slept for a few hours before heading downtown to the hospital (yes, they still wanted to see him).

 I have to say, I was amazed at how well the treatment in the ER worked on his breathing.

He sounded and even acted like a different child, albeit, a grouchy one.

 My dear friend, Calene Borup was today's date.

And somehow, in my lack of sleep stupor, I forgot to get a picture of her with Kean--
I even missed what would have been an award winner, I'm sure...

when Calene and Kim (one of the Child Life Specialists at the Cancer Center)

sang and danced the Chicken Dance to keep Kean entertained during blood draws.

So are you sitting down?

Remember how his counts last week were at 650 (and needed to be at 750)?

Today's counts blew us out the door. They came in over 5000.

No, that's not a typo.  Over 5 Thousand!

The doc said he got a boost from the steroid shot in the E.R.... but geez, that was quite a boost.

They sent us over to the PICU (Pediatric Intensive Care Unit) and had a couple of the

doctors evaluate him.  They determined even with the Croup, it was worth taking the

chance for complications and getting the Chemo into his body.

The doctor on the left, I only know as Derek.  I like to think of him as Dr. Surfer.

Anyway, he's the Intensivist who oversees Kean going under and out.

On the right, is Dr. Hansen, one of Kean's Pediatric Oncologists.

Love these guys.

 They said Kean handled the Propofol (Michael Jackson drug) without any problems.

But geez, did he struggle once he finally woke up.

His Oxygen levels were consistently on the low side, so they finally admitted us to

the hospital,

Cringe.

I didn't freak out too much (mostly because I was just to darn bone tired).

But also because, my gut told me he'd be fine in a few hours.

And sure enough, shortly after Calene left with my car and headed home, Kean's

Oxygen levels climbed and stayed at normal levels.

Thankfully, Calene (who also has earned her sainthood position at the Vatican)

came back and got us.

I won't bore you with the hours and hours of crying Keanut logged today and most of the night in the E.R.

I'll just say we are both going to bed early tonight.

But I will be going to bed with a smile on my face.

Greer decided to surprise her dad and make him a special lunch for tomorrow.

Check out what she wrote on his lunch bag.

Love sure soothes even the tiredest of souls.

Another Eve

Well, here it is the night before we head back to the hospital and start the "count" rigmarole

all over again.

I think I'll take a Melatonin to help me sleep.  I am always restless on these nights before.

Meanwhile, Kean seems ready.

He has more energy and seemed happier today than he has in weeks.
Elly came over and watched Kean and Greer (and Kean was actually happy for her)
while Byron and I took the older girls to church for the Boise Temple dedication.
What a wonderful experience.

 And, oh, does Kean love his new Harley.

If he's not sitting atop it... he's pushing it down the hall and scooting after it.

I even considered taking it over to my parents' house tonight for our family dinner.

Kean ate well and just before we left, we topped him off with one of my

dad's famous Cherry Nut Milkshakes.  I grew up on these and if

you haven't had one, you haven't lived!  Seriously.

Anyway, hopefully his full tummy tonight will tide him over until tomorrow afternoon

if all goes well.

Keep those fingers crossed that try number 4 will be our lucky one.

Angels Bearing Gifts for Our Hell's Angel

For much of the day, I was at quite a loss as to what in the world I could blog about.

I considered writing about Byron biting it as he chased down one of our cows...

but alas, since I didn't have any video, that one was vetoed.

Then our neighbors, the Marzak's dropped in bearing a humongous present for Keanut.

 We had to wait until much later when he woke up from his nap before opening the present.

 As always, he was pretty enamoured with the wrapping paper.

 But once his Poppa got the Harley Davidson Motorcycle Big Wheel put together

(and his ultra cool leather jacket on)...

 Boy Wonder wanted on and did not want off!

 He can actually touch -not the pedals- but the ground.  So he thinks he's

pretty cool sitting atop his Hog!

I swear, he's even beginning to look the part.

Hello Tough Stuff!