Moving Toward the Light

Another Chemo day up.

And another Chemo day down.

This boy, Kean, I tell you is a trooper.

We had an extra amount of waiting (they were having computer problems)

Lucky for us, we had the perfect "Chemo Date" today, Kris Pattee

who helped wrangle the boy.

We also had the music therapist singing Sound of Music tunes.

 Kean's port is frequently "persnickety" and today was no

exception.  We had a rough time getting blood out of him

but thankfully the nurse finally got the red stuff to flow- enough.

 Surprisingly, his counts are good -for him

and right where they want them to be.

We met with his doc, Dr. Camilo and talked 

once again about the end and what that will look like.

Get this, once he finishes his Chemo, that's it.

Dr. Camilo told me they won't do a big bone marrow draw

to see if there's any cancer lurking in his body.

That shocked me.

But Dr. Camilo said research has found that it is not worth it

to put the kids through that pain and trauma.  Oftentimes, really 

small amounts of cancer hiding out won't show up in those tests.

And if a child still has cancer, it will manifest itself in other ways

(wacky blood counts, rash, fever etc).

Kinda crazy-- we'll just finish and hope it's the end.

Meanwhile, back to today.

When they went to give him his Chemo today, the nurse

noticed a problem.

 His port was no longer accessed.  His port is what we use

to get blood and to give Chemo.

 If you look carefully in this picture, you can see

how big the catheter needle is.  It was completely

out of his chest and bent down.  Even though

his chest was bloody, thank goodness it was bent down

so it wasn't poking him!!

 Poor little guy had to be accessed again.

He may look patient here...

 but truth be told, he wasn't happy about it -- at all.

Thankfully, we got it in and got back to business.

 He's been doing great overall tonight. 

It really hasn't hit yet.

It probably doesn't hurt things that Byron took

him for a long motorcycle ride.

I took these cute girls to a Mother/Daughter church

dinner and party.

Loooonnnnnggg day.

But we are getting there.

The light is growing very bright at the end of this tunnel.

Snow Cones Trump Chemo Anyday

Ah, are we ever worshiping the sun over here.

A perfect 71 degrees today-- can't order up one much better.

When Kean walked with us down to the school bus, he stopped

dead at the shed at our neighbor's- Grandpa Bodily's house 

and wouldn't budge.

Of course, this is the same shed that houses the ol' lawn mower

he is so very fond of.

Lucky for us, Grandpa Bodily offered to take Kean for a spin

on the chariot (so I could go vote on the school bond).

 Let's just say we had two very happy boys who tooled around

the neighborhood (put putted might be a better description).

 I do believe Kean would live outdoors if allowed.

Reese too.

 And I do believe, she'd live on snow cones

(if allowed).

Tomorrow's another big day for the warrior boy.

Sedated Chemotherapy at the hospital.

Dreading it big time-- but also looking at it

another one down and another month closer to being

DONE!!!

The Weigh In

Good news to report from plague central.

Byron got out of bed for about half of the day!

He even went down to his office for paperwork for a few hours

(before coming home to crash).

But he is most definitely on the mend.

And please don't let me jinx it, but all the other Barkettes

are so far just fine.

If I had money, I think I'd invest in Tamiflu.

Had to share this cute pic of Greer.

She is auditioning for a special arts school on Saturday.

We've heard her sing "Popular" from Wicked-- oh,

about 2463, nope make that 2464 times.

 And as for the Keanut-man, he's in great form.

Mostly happy today and still eating above and beyond.

I think I failed to tell you he gained nearly a pound

in the week between doctor's appointments.

Which is all the more shocking when you realize

he would hardly eat anything for the first four days

following Chemo.

He's more than made up for the fasting-- and is now

only a few pounds shy of Reese's weight.  

The Bug

I'll spare you a running tally on the food intake today.

This picture from breakfast will give you a "taste" of

what life is like at the Barker ranch.

And I'll really spare you about his "roid rage"-- man

was he on one this evening.

 We spent half of of the day at the hospital.

Look at who saw himself on display in the lobby of

MSTI (Pediatric Oncology clinic).

 So, other than eating his way through the appointment-- here

are the cliff notes.

We had some problems getting blood out of his port for a sample.

But luckily, it worked without going through the rigmarole of

having to administer meds.

 And after his counts were so scary low last week-- they

were unbelievably high today.

From 540 to 2314.  

We all about fell out of our chairs.

The doc said we can thank the Steroids--

and that his counts should plummet again after tomorrow 

when he takes his next dose of Methotrexate.

 Kean and I also started on Tamiflu today in the hopes

of not catching Byron's plague.

We notified the girls' pediatrician and if they so much as

cross their eyes funny, they'll go on it too.

As for Sickie, we thought he was turning a corner-- he even

walked the girls (kept at a safe distance) down to their bus

this morning... but was so exhausted he went straight to bed when he got back.

He does seem a bit better but then it comes back with a vengeance.

This is one flu bug we all want to avoid.

Nas---teey.

The Trollop and the Trooper

Hands down, I have the greatest neighbor in the world.  

I love him with all my heart.

We called Grandpa Bodily this morning and told him we'd be driving down

to get a picture with him and Reese before school

and this is how he greeted us---

like a trollop hitching for a ride.

So adore him.

 He spent several hours last week helping Reese design

and build her Valentine's box.

My kids go to a math and science magnet and her box

had to be a simple machine.

Grandpa Bodily is a retired HP engineer-- and her box,

when finished, had a pulley, a lever, a wedge- you name it.

 Way out of my league. 

I can just barely handle the decorating.

But what, oh what, would we do without Grandpa Bodily!

 Kean after refusing to eat much of anything since Chemo

on Tuesday is in full Steroid mode as of tonight.

Three dinners.

He did go to therapy this morning

(yesterday he was so not cooperative)

and had a decent morning

but man, you can sure tell he feels lousy.

Here's his sweet little Valentine's he made 

during therapy today.

He's not only an angel but a trooper.

The Good, the Bad and the Inconvenienced!

Another hospital Chemo day up

and another hospital Chemo day down.

Kean did great today-- his port worked,

we got blood with no drama (thank goodness)

and we hardly had any waiting time.

 In fact, I think it was our fastest Chemo day ever.

We had the lovely Cassie Angelos (our dear friend from

Camp Rainbow Gold) as our Chemo date today.

Notice, Kean couldn't be bothered to look at the camera

and smile.  Too busy watching Tangled.

 Cassie was invaluable at corralling the boy, keeping him

entertained and feeding him a steady stream of Goldfish.

She also saved our bacon when we left the Chemo clinic,

headed over to the hospital pharmacy only to find they didn't

have a record of any of the three drugs we were supposed to

pick up.

It just went down hill from there.

An hour later, we still didn't have Kean's needed drugs.

Cassie was a trooper, helping me keep Kean from melting down.

Finally, after we left and were just outside the main doors of

the hospital, they called to say they had one of them ready and approved.

Sigh.

It's a crazy, long ol' story.

So much for breezing through Chemo and getting home early!!!

Illumination

I didn't take any selfies of Kean and I today-- the ones that

would have shown him whimpering, grimacing and boring his head into my chest

in pain.

Can I vent and say again how much I hate, hate, hate cancer.

I swear this has to be as bad as water boarding-- having to watch

your baby suffering.

He had stretches where he put on a happy face--

thank goodness.

Otherwise, I think I would have checked myself into you know where.

Tonight, just after 8, he told me he wanted to go night night.

But at least now, I have some insight into how he is feeling.

I met a girl up at Camp Rainbow Gold's Family Winter Retreat--

an eleven year old who has Kean's same kind of cancer and is

in the same phase of treatment he's in.

I had her go through each drug he's on and tell me what it feels like.

So in case you are wondering, the two Chemo drugs he took Wednesday

and the third one he takes nightly:

1. makes every bone in his body hurt.

2.  makes all food taste like metal.

3.  makes lights and sun hurt his eyes.

4.  makes sounds hurt his ears and head.

That last one is particularly problematic, with three very loud sisters.

Gotta work on that.

Here all this time, I thought his reacting to noise was a Down's thing.

I'm still learning and I'm still praying we get through this.

One day at a time... right?

But I do owe a thank you to one brave girl (thanks K.T. for

sharing with me) and to my friend Teresa Peery who

brought over a huge tub of Vanilla ice cream tonight for Kean.

He's caught on to me serving him yogurt mixed with frozen berries

when he asks for ice cream!

The Third Boob

How's that for a headline?

But for once, you can really, really see Kean's port

(what we call his 3rd boob).

We were at the hospital for half the day for heavy chemo

(in his brain and spine--yuk).

But it went surprisingly smooth. 

Grandma Kay (Byron's mom) and my good friend Jeanie

Stidham were our Chemo dates for the day.

 And we had the easiest time ever getting Kean's port

accessed and getting the blood to flow.

(Tender mercies).

 Kean surprised us all with his vitals.

He's grown taller and gained just slightly over a pound.

His counts were even high-- a little too high-- so two of his

main drugs were upped (he's taking a higher amount).

That hasn't happened very often over the past 2 1/2 years.

 We had quite the "reunion" day.

First, we ran into two of the families we had just spent several

days with last week at Camp Rainbow Gold's Winter Retreat.

Then, Jason, one of the heads of Camp and the guy we lovingly

refer to as the Pied Piper (my kids adore him as do all children)

stopped in.

And finally, we had our favorite Respiratory Therapist,

Sabrina assigned to us today.

Her brother Joe (who we got to see today too) was

one of Kean's most beloved nurses when he was so sick

for all those months.

 The drug they use to put Kean under for his procedures

is supposed to wear off after fifteen minutes.

It took Kean a good hour to come out of it today.

I look at it as he got a much needed nap.  Too bad I couldn't join him!

He's doing pretty good tonight considering all the gunk he got

poured into his body.

We had a quiet evening at home.  Bryon, Grandma Kay and Holland 

all went out to dinner and Christmas shopping.

And Reese and Greer?  They

went with the Bodily's to a nursing home where the girls

played the elves to the Bodily's Mr. and Mrs. Claus.

The girls sang Christmas Carols and passed out--

get this, 180 candy canes.

Kicking a Little Cancer Butt

Phew!

Kean has officially turned a corner.

The worst for this month's dose of heavy Chemo

looks like it is behind us.

And for that I am very thankful.

We are also officially into the power eating stage.

Gotta love those Steroids.

Let's see...

he ate a full plate of bacon, eggs and a bagel.

Two cups of orange juice.

Two pieces of pizza, a bowl of peaches, a handful

of peanut M & M's, two rolled tacos smothered in cheese

and sour cream and a side of beans-- and that was all 

before lunch.

And yet, he's still tiny.

Crazy stuff.

Oh, we received the best news today-

and I mean the best.

Here's the background:

one of our very dear friends, was diagnosed with terminal cancer 

probably a year and a half ago.

After undergoing brutal chemo and radiation at one of our local

hospitals, they told her there was nothing more they could do to help her.

She went to Kean's hospital next and had nearly an identical experience.

They tried and told her they were sorry.

Out of desperation, she went back to a University hospital in Columbus, Ohio

and was thrilled when they agreed to try things no other hospital

felt comfortable trying.

Well, today, she let us know that she just had a clean scan--

meaning no cancer showed up.

Don't ever doubt -- miracles are all around us!

Plus,you know it's a good day when someone kicks cancer's butt!!!

Janice- you are a warrior!

The Yoga Master

Surprisingly, Kean has handled this round of heavy

Chemo pretty good.  Of course, we're only one day

into it and as Holland pointed out, "yeah mom, but

the Steroids haven't really hit yet".

But I'll take a good day whenever I can get it.

I still get such a kick out of how he sleeps--

all folded over in half.

 I used to "un fold" him but have given up

since he just goes right back into the sandwich position.

And check out this watching Tangled  position.

Wonder if they teach that in mainstream Yoga classes.

 Perhaps he's not getting enough to eat

and those toes are filling in.

Actually, we are back on the Steroid diet--

bacon and eggs for breakfast.

Spinach, cheese and bacon quiche for dinner.

You get the idea.

(Should have invested in Pork Bellies)!

Chemo? Check!

Get this.

While I was up this morning getting Kean ready for his big day

at the hospital, his sisters were downstairs making him eggs, bacon

and a bagel.  Doesn't get much sweeter.

(Plus, I think they are trying to earn extra points for Christmas)!

I am happy/relieved to announce that after today, we only

have ten more months of Chemo left!!!

Of course, we'll still be making regular trips to the hospital for tests

for like, the rest of his life... but the hard stuff we hope will be

in the rear view mirror ten months from now.

My mom, "Grammy" was our Chemo date for the day.

She's never, ever gone with us-- after all this time.

So it was a real treat.

We also got to see Jen-- Kean's favorite Child Life Specialist

(her job is to play with the kids)!

And Kean loves her.  He gave her a big kiss (a lick)

on her cheek when we said goodbye.

He won't do that for just anyone.

The good news today?  His counts are a bit better--- not so scary low.

And he didn't kick Dr.Camilo during his thorough examination.

But he did fight and try...

Kean also got to watch his beloved horsey movie:  Tangled.

He is currently obsessed with Maximus.

In fact, I think he was almost oblivious to the nurse hooking

him up for Chemo.  He couldn't be bothered

to tear his eyes away from the screen.

In the background of the picture above, there is a teenage boy

receiving his very last dose of Chemo.  I told him congratulations

but had to stop myself from racing over and hugging him.

All the nurses were so cute with him- they even had made a sign.

Someday, someday....it will be Kean's turn.

Hot and Cold

As a mom, it sure is painful to watch your child in misery.

That ol' wicked Chemo is so dang cruel.

He was lukewarm for Physical Therapy this morning.

We tried to get him to walk around some inside

since it was raining outside.

For Maureen and Occupational Therapy, he had moments

of cooperation (and joy).

 She brought this little game where he had to flip a lever

and it made a little disc fly into a box.

Boy, oh boy, did he like that one.

Just take a look.

Too bad that was the high point of the day for him.

It has been one of those whine and hug, whine and hug 

kind of days.

But I'm looking on the bright side.

At least we got through the day without any vomiting.

Trust me, that's a plus.

And you know what?

His hugs are the best.

The best!

Hercules

I'm so proud of my little guy.

In spite of having heavy Chemo on Tuesday

and in spite of his feet bothering him from the drugs,

he gave us a Herculean effort today for physical therapy.

 He walked up and down Grandpa Bodily's 

drive way... not once but twice.

This follows yesterday when I could hardly

get him to even use his feet!

I guess that just shows us how badly he wanted

to ride with Grandpa Bodily!

 Our sweet girls (and neighbor Jaymie) surprised

us by making dinner tonight and then serving us outside

on the lawn.

 We are pretty spoiled, if I do say so.

Speaking of spoiled, I have to record this (for my shoddy memory).

We've been having some problems with the Chemo Kean takes

nightly.  It has been clumping up.  We spent nearly an hour

yesterday waiting at the hospital to pick up this latest bottle.

Finally, the pharmacist came out and said she wasn't happy

with how it was turning out (it is a complicated process

of breaking the Chemo down from pill form to liquid).

So she was going to have to re-order and start all over again.

Get this, the pharmacist didn't want me to have to drive clear

across town again, so she offered to meet me near my home

on her way home from work.

I have decided there are a lot more good people

in this world than there are bad.

We sure have met some of the kindest.

Cancer Still Sucks

Today was hospital Chemo day...

and somehow, once again, we got through it.

Lucky for us, we had Elly Moomey along as our date

and a bonus-- Reese came too.

 It's always a long day.

Between vitals, blood draws for counts, a thorough meeting with his

Oncologist...

 and then the waiting for and the getting of the Chemo

and the picking up of his meds.

But Reese helped out with feeding Kean lots of crushed ice

(the hospital has the best), snacks, making crafts and of course,

watching Frozen.

Kean looks good (except for his counts being really low)...

a huge difference from last week when he was so sick

and lethargic.

 The saddest thing was when I was waiting at the hospital pharmacy

to pick up this week's meds and ran into one of his cancer nurses--

dressed in shorts and a t-shirt.

She was off-- there to pick up her own medications.

As we waited (forever) she told me she has just been diagnosed

with lung cancer - (and may I point out, never smoked a day in her life).

So scary, so sad and yes, let's all repeat together how much we hate cancer!!!

We hope to see her back sometime in 2015.

On a much brighter note, Motorcycle Jeff came by

to help Kean forget about all the junk they put in his body today.

He was much happier this evening after that wonderful ride!