Fini, The End, Amen!

See that syringe in my hand?

It is Kean's very last Chemo treatment.

His last.

Oh my gosh, it is over (this hard part, anyway).

I don't know when it will sink in.

You'd think after 1,157 days it would sink in--

but it may take a few.

 The sunrise and sky was glorious this morning.

There were rays shooting down- as if  Heaven was

smiling and sending congratulations.  I wish my camera did

a better job.  It was beautiful.

 And trust me you are gonna want to watch this.

Kean wasn't feeling well this morning so we had him

out on his swing on the porch.  Byron and the girls decided

to put on a little "end of cancer treatment" show--

until near disaster hit.

Reese is fine, a bit sore but fine.

We then changed the song to:  "last day of cancer treatment,

last day of cancer treatment.  First day of broken arm, oh

here we go"!

We dodged the bullet on that one.  

Finally, this evening, my good friend, Fabiana

came over with her camera,  Motorcycle Jeff

came over with his Harley and we had a photo shoot

to commemorate Kean's last day of cancer treatment.

 Other than him taking off his leather jacket and shoes

during the photo shoot and throwing the sign

my friend Cindy Maliwauki made for the photo session,

he did surprisingly well.

Hopefully, we will have pictures to show you TOMORROW!

I can't wait.  They are so fun!

 And guess who got to go on a cycle ride--

Kean was sure in his happy place tonight.

I don't think he quite understands why we were

all making such a big deal out of him taking his medicine.

Anatomy of Misery

I don't need a picture to paint a thousand words.

One word will do just fine-- misery.

 This round of Chemo has hit Kean hard and fast.

 It has been a long, long day filled with lots of grinding of the teeth,

whimpering, whining and flat out crying.

On the bright side, there's been lots of snuggling.

We did get out of the house for a doctor's appointment made

three months ago.  Kean's ENT wanted to take a look

at his ears.  He has one tube that is still in his ear but not functional.

We decided with as ornery as he was today, we'll continue to wait

(instead of surgically removing it).  He got a six month reprieve.

And that little puppy better be out of there by then - on its own!

I'm off to bed.  

Patient Zero

Interesting day.

Kean had his little therapy school today and when we showed

up, his Speech therapist informed us it had been a year and

today was the day for his evaluation.

Could they have picked a worse day?

He's hopped up on Steroids-- Steroids that make

him angry, emotional and mostly non-cooperative.

This face kinda captures his state for most of the week he's on 'roids.

 I told her to use the fact that he will eat the entire contents of

a refrigerator to her benefit for snack time.

And she did!  In between tanking down two containers of applesauce,

a bag of grapes, a banana and goldfish crackers, he cooperated and made

it through his eval.

So, he's on the level of a two year old-- which isn't great

when you consider that he's five.  But as we decided, after

all he's been through, that is pretty darn good.

We've seen him blossom lately-- with his walking and his talking.

He'll catch up, he'll catch up!

 The other interesting thing today is Kean's nightly Chemotherapy 

medicine was changed.

Well, the recipe anyway.

We've been waiting for months for the FDA to approve a

new mix of Mercaptupurine or 6MP for short.

Up until today, I had to trek to the hospital every other Monday

to pick up his 6MP.

This new recipe is more stable and doesn't have to be

compounded (made into a liquid).

Kean is the very first patient in the state of Idaho

to be on the new recipe.

Plus, and here's the good part-- it will last a whopping

six weeks!

The bad part is the price.

 Kinda scary when you think about how many different drugs he takes

in the span of a month.

Thankfully, it is covered by insurance-- but I find the 

prices all so crazy.

Really now, do the pharmaceutical companies have to make

that much???

Bacon, Bacon...

Slowly, slowly, our Kean is starting to make a comeback.

Darn chemo.

Makes him hurt all over.

Especially his jaw this time.  

You should hear him grind those ol' teeth.

He'll give Dracula a run for his money with those sharp points

by the time we get through this.

He did just okay at therapy this morning.

But honestly, just okay is great with me with how he has been.

And he is back on Steroids-- which means a short fuse

and a long period of eating.

The favorite du jour?

Salt and Vinegar chips.

 He couldn't get enough of them.

Oh yeah, that and bacon.

If I let him, he'd eat an entire pound.

I'm so mean.  He cried when I told him it was all gone.

Cue the Fireworks, Applause and Music!!!

If I had my way, I'd have today declared a national holiday.

Today is as significant in our house as any birthday or big holiday.

That's because today means we have only one year of Chemotherapy left!!!!!!!!

That light at the end of this cancer tunnel is actually there-- faint but there!

Just think, after today, I can say we have less than  one year left of treatment.

Our neighbor (neighbor of the year) Grandpa Bodily called up

first thing this morning to ask if Kean could come play (and work out).

He drove his lawn mower over to our place and even picked up the boy.

 Kean got in four good "walks" on his own to the mower.

 So between that... and the need to celebrate this momentous day,

the three of us loaded up and hit the drive though at McDonald's

for a treat.

Dumb McDonald's was cleaning their ice cream machine 

so we all had to settle for Yogurt Parfaits.

Byron took the three girls camping for the weekend.

We'll have to have a less than a year party when they get home.

Funeral Number Two

Honestly, I thought today would be an overly emotional one for the girls

after burying Zoe last night.

But they were in a pretty even zone.

Byron had found several old pictures of our sweet dog,

so they started out the morning remembering and oohing

and ahhing.

I had to share this one-- it cracked us all up.

Back in the day, Byron was involved in scouts and

Zoe regularly went out hikes and camping excursions as his assistant.

She had her own pack and carried her own bed roll.

She was totally in to it and all serious about her duties.

 We had our second funeral in two days-- the funeral for

our dear friend, Anthony Moretti.

He was only 12 and died of brain cancer last week.

As we loaded into the car this morning, Greer told me

she didn't think she had any tears left to cry.

We were glad we went though, Anthony was a spiritual kid--

one wise beyond his years.

His dad told the story of how that how after months of Chemo

and thinking he had beat it-- pain in his hip and a subsequent MRI

showed the cancer was now in his spine.

Anthony was understandably angry.

Yet, as his father said how he wished he could change places

and how he wished he was the one with the cancer--

Anthony said no, I'm glad it's me.  I wouldn't want anyone

I love to have to go through this.

Kind of gives you an idea of his character and strength.

In his short life, he definitely touched more lives than most of us do

in a long lifetime.

The church was packed with his friends, classmates, teammates etc.

Meanwhile, my mother and our friend, Melanie Clark took Kean

for his Chemo procedure (the one where they put the meds in his brain and spine).

I was so nervous and torn to not be with him-- but my prayers were answered

and things could not have gone any better.

And I swear, you'd think the doctors shot him up with "happy juice"

instead of Chemo--

he was in the best mood this afternoon.

All giggly, cute and yummy.

It started hitting him a bit tonight, but whew, so glad

things went so well.

What a blessing.

Pulling For You

We survived another day of therapy/school without any major issues.

I guess there was a little incident with some hair pulling-- but get this,

the therapist told me the little girl pretty much tossed her hair in his face

and likes to get that "input".  Go figure.

We're still working on that-- but he did play alongside this little girl

for quite some time.  Progress, right?



 They said he is just one exhausted little boy about half an hour before it is time to go.

Hopefully, he'll build up his strength-- but kind hard when he just starts feeling better and then he just gets

knocked down again.

Heavy Chemo at the hospital tomorrow.

Yuck.

Super Chemo Man

Big exhale.

Kean did great today.

(He's vomited twice tonight and had the runs... but he did great today).

Stephanie Simpson (on the right) was our Chemo date today... as was

my cousin's daughter, Christina.  She is the Valley's Junior Miss

and wants to go serenade the little Cancer kiddos with her beautiful voice.



 Today we made her sing for Kean while he got his blood drawn

(and thankfully after last week's stresser, it worked perfectly), while

they took his vitals and when they de-accessed his port.

 He's gone down a bit in his counts (to the 600's) but the doc said no matter what,

in this phase, they move forward with the Lumbar Puncture (Spinal Tap to put

Chemo in his brain and spine).

I'm sure you can't tell, but Kean is in this picture, that's him on the bed, 

under the hands of the RespiratoryTherapist.

 I guess they had some kind of emergency coming in, so the doctors were

in a hurry to get Kean's procedure done before they were pulled.

I swear, they had him out and done in record time.

Our boy just took his own sweet time (as usual) coming back to consciousness.

Guess who came home from Texas tonight-- our sweet Greer.

I didn't capture it, but Kean was thrilled.

 And oh, was he ever happy to see his Grammy.

Me too!

The Last Hurrah

It is a good thing Kean is totally unaware of his schedule.

He's got a big day of Chemo set for tomorow at the hospital.

So tonight... we feasted.

My mom and Greer are still out of town, so we had my dad over

and some of our dearest friends, Ron and Elly Moomey.

 I think Kean was totally salivating at the desserts Elly brought...

 Actually, we all were.  He just showed it more than the rest of us.

And yes, I did say desserts- plural.

Elly is a total over achiever when it comes to the kitchen.

We were quite spoiled tonight.

Pray for good counts, a boy who doesn't complain that he's being starved for the morning,

a mom who is calm, doctors to be brilliant and all to go well as

they put Chemo in his spine and brain.

I keep reminding myself for every one of these we have, we are that

much closer to being done- done- done!

Sigh.

Puberty?

You'd think Kean was in the throes of his teenage years.

His face is as broken out as any pimply pre-pubescent.

(How's that for alliteration?)



Gotta love all these fun side effects.
Thankfully, this one's not so bad in the big scheme of things.
We don't know which of the Chemo drugs he is on that

is causing the break-out.

But we are pretty used to it by now.

 He breaks out for a few weeks and by the time it is peaking and getting

to be at it's worst, he goes on Steroids and it all clears up again for a few.

Alas, he goes on Steroids next week.

I guess the face clearing side effect is the silver lining on

that hated drug.  And we will take it.

Miffed, Mad and Not Going To Take It...

Chemo today was, well, let's say, interesting.

Boy Wonder's counts were actually too high-- get this, they were in the normal range.

Which isn't great.

They want him between 1000 and 1500 and he was just over 2000.

So they'll watch him for a bit and if the counts stay that way, they'll up the doses

of Chemo he's on at home.



 He did get Chemo through his port today

and followed tradition with the ritual watching of the movie Cars.

He was a bit clingy... since I think he was traumatized during his appointment with the doctor.

If you remember, the type of Cancer Kean has (A.L.L.) likes to hide

in the testicles... so Dr. Camilo gave a thorough examination of Kean's privates...

and let me put it this way-- Kean was M.A.D. 

He threw a fit and continued to cry long after his junk was safely put away.

Dr. Camilo smartly decided to wait until Kean is under the magic of anesthesia

before pulling that stunt again.

 We had one of our favorites as today's Chemo date:  Melanie Clark.

And here's the good news I saved for last-- we do not  have

to go back to the hospital for a whole month!!!!!

We'll just keep him on home Chemo and Steroids (yuck)

until then.

After visiting nearly weekly since last July, I'm not sure

I will know what to do with myself.

Ahhh, life is good.

Those Lousy Side Effects

All is right with the world again (well almost).

Byron and the girls got home this evening

and it sure sounds like they had a wild and wonderful camporama.

Kean has missed his sisters.

He had a really rough night--- just moaned and whined throughout.

His fever was back this morning but stayed

below the "dreaded trip to the hospital"'101 degrees.

 Grammy finally got him to eat a bit and give her this half smile.

 I just think he feels first class lousy from the Chemo.  His fever did

break this evening and I took him for a bike ride.  He actually giggled.

Boy, does that boy love the great outdoors.

The girls too... from the looks of it.

 Byron and the girls hooked up with some friends of ours and had fun hiking around

the City of Rocks. (Don't you think Greer looks a bit like John Lennon?).

 Anyway, you know it was a good time when they all come home

exhausted, dirty and sporting a mountain of laundry.

 Byron said the weather was beautiful-- but still a bit cold at night.

 Love this picture of the girls cooling off after a hot, sweaty hike.

Off to bed now.  The rule in our house is the Easter Bunny won't make a visit

until everyone is asleep.



A Milestone

Kean and I celebrated tonight with a walk and a yummy dinner Elly Moomey brought over.

Byron and the girls are still on their camp-o-rama.

We had Chemo today...

a Chemo treatment that's quite significant in our world.

Kim Leach was our fun date at the hospital.



Today marks the final day of all the hard core Chemo phases.

We get two whole weeks off before starting the Maintenance phase..

the phase we've been pacing ourselves and praying that Kean would be

strong enough to make it to.

He will continue to get Chemo until September 13, 2015... but some of

the more wicked Chemotherapy drugs (the ones that make his hair fall out

and send him to the hospital etc.), are behind us. 

Dr. Camilo told us that a lot of parents fall into a depression

when they finally get to where we are.

My dear cousin who went through this same trial with her daughter

put it like this.. she said so many months are spent in survival mode,

just trying to operate under such extreme stress that when you finally

get to this goal of Maintenance-- you collapse from the sheer exhaustion

of the intense pressure of trying to keep your child alive, minimize his pain and

hold the rest of your family together.

I have so much support and I've had that support all along this journey,

that I think I'm in a pretty good place to handle this transition.

We still have a long, icky haul but I firmly believe the worst

is behind us.

By the way, Dr. Camilo told us today that Kean has done "much better

than he ever expected".  Dr. Camilo is a man of few words...

so coming from him, that was huge.

We have so much to be thankful for, don't we!