The Vampire's Bite

Yikes.

I knew it would happen

and of course it did.

Kean had an appointment to have his teeth checked

with the Pediatric Dentist.

 This is shortly after he clamped down hard- and I mean hard

on the poor Dentist's finger.

Just look at that smirk!

Sigh....

 Somehow, we got through the rest of the extremely short exam

with him just macking down on the instrument the Dentist stuck in Kean's mouth.

Holland came too...

Bet you didn't know the lobby of a Dentist's office is the perfect place

to practice walking.

And wow, is Kean a-walking!

This is even after we put in a few laps of "lawn mower therapy"

with Grandpa Bodily this morning.

 I tell ya, the boy is really taking off.

He even was able to stand up from a crawling position

all on his own for my mom a few times a few days ago.

It is finally clicking.

Oh, and hopefully, the great bacon fest is coming to an end--

until next month's Steroid run.

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.

Zoo-pendous!

The good news is... Kean seems to be feeling a bit better.
He is also about done with this round of Steroids.
That should help.

The even better news is Holland - thanks to Kean

having cancer - got to go spend the night at our fabulous zoo.

(Really, it is thanks to Camp Rainbow Gold - and thanks for these pictures).

She joined teens with cancer and teen siblings of kids with cancer

for a fun overnighter and behind the scenes of the zoo.

 She seems to have had a wonderful time

and even got "some" sleep.

I think the highlights for her

included getting to spend time with her dear friend Elizabeth

(Elizabeth is Anthony's big sister.  Anthony passed away a few 

months ago)...

 and getting to help feed and learn all about the animals--

things most zoo visitors never see.

She was, however, quite alarmed to learn that some

of the animals are fed "cute little bunnies", pink mice etc.

Ah, the circle of life.

One Day At A Time...

I honestly don't know if we have it in us to get through 

another year of this.

Poor Kean.

That dang Chemo hit him hard last night and all day today.

I didn't even walk the girls down to the bus for school 

this morning. Kean just wanted to be held and to whine.

 The internal debate was on as to whether he should 

go to horse therapy.  Thank heavens I opted to gamble.

He did just fine for the most part--

30 minutes of moderate happiness on ol' Romeo.

Great vs. Grouchy

Got a break from the crazy life today... and headed up

to Bogus Basin Ski Resort with some of my best girlfriends

to decorate for Pam Brown's daughter's wedding. 

We worked our tails off...

covering the ceiling with tiny white lights and lots of tulle

and hanging lights over the bar, on the stairs, balcony and pillars.

My mom took care of the Keanut man-- even doing therapy with

Andrea and Maureen.

I hear he was a rock star for Andrea and my mom

(not so much for Maureen).

When I left the house he kept saying "no Grandpa Bodiily's.

Grandpa's house".  Yes, he's putting words together,

no, it's not quite as clear as I wrote it.  And yes, he

is one opinionated little tiger.  He didn't want to go 

do lawn mower therapy (walking)... he wanted to 

go to my parents house!

But once he got down there-- even though he had heavy 

chemo on Tuesday... he dazzled.

Of course, he's as grouchy as a troll tonight--

but he was great this morning.

Christmas in September

I was totally and utterly dreading today.

Turns out, it wasn't bad at all.

First off, the really good news is that we didn't have any problems

with his port.  Kean's blood came out nice, red and easy.

The second item to be very thankful for?

While his counts are back low, low (no immune system)

the docs determined he did not need a 4 hour antibody transfusion.

That was a big phew!

And finally, we had a dear friend as our "Chemo date" today--

Christl Holzl from Camp Rainbow Gold's Sun Valley office.

She is one of the most delightful people-- ever

and kept telling us Kean is the best date she's had in a while.

Loved that.

She also brought him a little fire truck that zooms all over the house.

While he wasn't too thrilled with his gift after coming out of sedation,

it has turned into quite the hit around the house tonight.

 We had to laugh---

today could be labeled "gift day" at the hospital.

On top of the fire truck, Kean got another rubber duck

(Officer Quack) to add to his collection.

He gets one for every time he gets his blood drawn in clinic.

I think we are in the 80's now.

(That doesn't count all the blood draws in the hospital and E.R.).

 Also, it being Pediatric Cancer Awareness month, Kean got

to pick out a homemade quilt.  This one has airplanes, cars

and trucks.  Darling- even without motorcycles.

 Finally, we were given this little parting gift-- a stool sample kit.

Fun stuff.

All those hard core antibiotics Kean is on have done a number

on his diapers.  They are a bit worried about C-Diff -- so

lucky me, gets to take a sample down to the lab for testing.

(Yes, I'm living the life)!

But wait, there's more.

When we dropped Christl off, the entire Camp Rainbow Gold office

came out to say hello.

And they brought this sweet little pup for our sweet little boy.

And if that wasn't enough, we came home to Teresa Peery, my

good friend from church bringing over a delicious dinner

and fabulous chocolate chip cookies for us.

Being surrounded by this much love and support, I feel

a bit guilty for dreading today so much.

Kean, so far, is doing great tonight.

We are one blessed family.

Beauty

So you know how we went to the hospital last Thursday?

Guess what Friday was?

School pictures.

Just my luck.

My growing up girls got up, got themselves breakfast,

made their lunches and got themselves ready.

My mom arrived to them being ready for school.

That night, when I talked to the girls on the phone,

I asked Greer how school pictures went.

Here's her answer:

"Oh great!  I looked beautiful!"

Seriously, don't you love that?

And how many of us would have our picture

taken and say that we looked beautiful!

p.s.  big Chemo day tomorrow for the little man.

Extra prayers would be appreciated.

The Mend

At least part of this family is living charmed lives.

Yesterday at my parents house, a hot air balloon landed in

the neighbor's yard.

And then this morning, just as we were heading to church

another hot air balloon landed in our neighbor's pasture.

Pretty exciting stuff for the girls.

 And they are sweet girls.

Make that sugary sweet.

Look what they made for the Keanut man

to welcome him home from the hospital last night.

 Our boy, by the way, was thrilled to be home today.

Pops took him for a looonnng motorcycle ride

(that was their version of church).

At my parents house this evening

he giggled and had us all smiling

as he played ball with us.

It is quite amazing to go from being so sick

to being so happy.

May I just say thank you to the folks who invented antibiotics!

Houston... We Have Lift Off!

Doing a happy dance over here.

We got our escape papers this afternoon from the hospital.

His counts are back looking how they usually look (not normal but cancer normal).

And I'll tell you... both of us were more than ready to break out of here by then.

We are still waiting to hear the testing results and if he needs

an antibody transfusion.  The doc made it sound like if so, we can just get that next week

when we go in for Chemo on Tuesday.

Yep... get him feeling better to get him sick again.

 I'm home so I can finally load some pictures.

Here is right while I was fixing dinner Thursday when he

started crashing.

 You can tell this is his go to position for when he is not feeling well.

Here we are at some point during our six hour E.R. visit.

 Yep.  Miserable. 

My mom brought the girls up last night before what I wistfully

like to refer to as bedtime.

But we all know in the hospital, there is no such thing.

The Barkettes' made him get well cards and pin wheels

to decorate his room.

Then they proceeded to eat every granola bar or snack

they could find.  I seriously think they think the hospital is 

a fun place.  Silly children.

Our final night wasn't much better than the first torturous one.

Alarms went off for air in his tubing.

He's on IV fluids so woke up at 3 a.m. with

a soaked diaper, soaked pajamas, blankets and bedding.

And the piece' de resistance?

His port stopped working!!!

The nurse finally got it to take antibiotics and fluids

but once again, he had some clotting issues and

the nurse could not get any blood.

Sooooooo, at 5 a.m. she started him on

TPA (anti clotting med) and actually did two rounds of this.

By 7, it still wasn't working so the doc on call ordered

a "dye test" downstairs to see if they could see the cause.

At 8, just as we were getting ready to go, his port started swelling

and oozing blood.

Which actually was a good thing.  It saved him from more

radiation (the kid has had a ton in his life) in the form of the dye test.

The nurses de-accessed his port, we cleaned him up, numbed him up

and then accessed him again.

And this time, Voila!!!!  The red stuff.

By this point, if we are being honest with each other, I was

a mess.  Can someone please explain to me 

1.  Why life has to be so continuously stressful and unfair for this beloved boy?

2.  Why we can NEVER go into the hospital and just deal with

the infection or whatever it is that landed us there in the first place?

Why there is ALWAYS all this other drama?????

Really, I should just be thankful we got blood, his port is still working

and WE ARE NOW HOME!

p.s.  Thank you for all of the prayers and sweet notes of support.

You have no idea what that means and how that keeps us going.

The Torture Chamber

We are back "in".
Rushed Kean to the E.R. during what was supposed to have been dinner last night.
He went from off to scary in about twenty minutes.
The grossest part of this tale is he started projectile vomiting about three minutes into our thirty minute drive to the hospital.
It was one of those laugh hysterically or cry hysterically moments. 
The E.R. was trying as usual. 
Kean's port took fluids and eventually antibiotics perfectly but wouldn't let the blood out.  They finally ended up taking blood from his arm... Which just stinks when he has a port.
Then the lab dropped or screwed up that golden blood sample and we had to start over.
Finally, close to midnight they started him on antibiotics and then moved us upstairs to the children's cancer ward.
My friend Pam showed up about then and was able to stay with him for a while ... While lucky me got to go downstairs, get my car from security and clean up the puddled and dry vomit.
Oh.... don't think hell night was over.  
Kean still had to take tpa to get his port to stop clotting, do another blood draw and start more antibiotics and take chemo.
He finally fell asleep but between the nurses checking his vitals and his oxygen alarms going off constantly it was a regular all night circus in here.
The doc was just in.
He looks and sounds better but..... His white blood cell counts are crazy high which suggests he is fighting something that is bacterial.  The X-ray shows what looks like pneumonia.  And they are talking about doing an antibodies transfusion tomorrow.  So buckle up.  
The fun stuff continues.

The Long Walk

Lawn Mower Therapy is what we call our

daily work outs with our neighbor, Grandpa Bodily.

Kean has graduated to walking up the long, long (inclined) driveway.

 And trust me, it is quite the work out (for both of us).

I let him "fall" regularly and he's getting pretty good

at putting his hands out and catching himself.

 We do this almost every morning.

Bless that sweet Grandpa Bodily.

He sits on his mower and slowly, slowly backs it up

to encourage Kean to slowly, slowly keep moving forward.

 Here's a little snippet of those daily work outs.

Even though Kean is still fighting a cold, we are still

forcing him to walk each day.

Here's the beautiful thing- at the end of each session

Grandpa Bodily drives all around his property, up the street

to ours...

 and drops the boy off right at our back door.

I tell ya, we are surrounded by the best friends, neighbors

and helpers in the world.

Into the Ambulance

Kean had his little therapy school this morning.

They had warned me when I came to pick him up that

there would be an ambulance in the parking lot

for the kids to explore (guess they didn't want me to have heart failure).

It was so cute-- the paramedics let the kids sit on the stretchers

and lifted them up into the ambulance to get a close up look.

As you can see, Kean wasn't all that impressed.

Probably stirred up all kinds of bad memories

of when he was really sick and had to ride in an ambulance for real.

Actually, he had an awful day at therapy.

I guess he cried (sobbed for him mama) the first

part of things until they could distract him with snacks

and get him to settle down.

I think he's still struggling with getting over this cold.

He was supposed to have sedated Chemo/Spinal Tap

tomorrow.  What a blessing it was postponed until next week.

I'd hate to see him even more miserable.

We did have a bright spot today though...

one I completely failed to take any pictures of!

We stopped by Motorcycle Bill and Motorcycle Jeff's 

office after therapy to say hello and take them each a small gift.

Kean was quite confused as to why the boys were there

but did not have their motorcycles with them.

The "this just doesn't make any sense" look on

his face was priceless!

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.

The Flower Boy

My friend Pam Brown has been taking Kean to

his horse therapy on most Fridays--

(this adorable pic is from last week).

 But today she called in sick (has the same gunk

that we've all had- poor soul).

So I got to go.

Kean is getting more and more confident with his horse

riding skills.

We spend half of the session trotting (which

translated means mama is trying her best to keep up).

His new trick today was to take the plastic flowers

that decorate the jumps-- hold them for a second,

then toss them and watch Candice or I play fetch.

 And if I do say so myself, we are both pretty good at playing fetch.

Miss Hemingway

Lucky me.

I now have the gunk Kean and Reese had.

And I think Byron is heading down the same road.

Kean is still feeling on the icky side.

We did force him to do some therapy today though.

 I don't want him to back track on his walking progress.

So today, we upped it a bit and made him walk on the grass.

Andrea says that's trickier--- bumpy and uneven.

 I've been pushing him, even though he's sick because

he was scheduled for heavy chemo next Tuesday-- the chemo

that makes his feet feel like he has pins and needles.

But we got a break today.  Kean's Oncologist has to go out 

of town-- so his heavy chemo has been pushed back for another week.

That means more time to get this walking milestone a little more cemented.

 Meanwhile, back inside... Greer has been working on writing

a book.  I'm not sure what exactly to think of it-- she has

taken Kean's story of how his arm swelled up, how we went to the E.R.,

how a certain doctor noticed his bone marrow looked strange,

how that certain doctor decided to let us have one final night of peace

before telling us Kean had cancer, how we spent over a month in the hospital

at the beginning-- and made it a story about her.

Perhaps, a psychologist could tell us what this all means---

to have her take his story and make it all about her having cancer.

But then again, maybe it is best I don't know.

Good News All Around...

We dodged another bullet around here.

Kean's fever finally broke and he's slowly getting his energy back.

I carried him down to see the girls off on the bus this morning and 

then made him do a few laps.

He fought me on it... that is, until Grandpa Bodily came out to

get the ol' tractor out of the shed.

Then guess who motored on over on his own.

 It wasn't his best work out session but we got a few

"walks" in and as a bonus, got a happy boy who was

more than happy to get a lawn mower ride.

 It amazes me how much it takes out of him to fight off any

gunk he happens to catch.

Motorcycle Jeff came this evening to give him a ride

and it was all we could do to get him

to show M.J. his new tricks.

 It took coaxing from all of us to get a few steps.

But at least it was a few steps.

 And at least he got a big reward-- a ride in near perfect weather.

We got some good news today from the Pediatrician--

Reese's bone age test came back normal.

That means she'll grow when she grows.

And thankfully, there are no red flags

or further testing we have to worry about.