Another Freaky Thing

Exhale.

It's not that I hold my breath for every one of these

cancer screenings/follow-ups.

But I kinda  do.

We went back to the hospital yesterday.

I have to put a long sleeve shirt on Kean for

these days after I numb up his arms for blood draws.

Otherwise, he'll just pull the wrapping right off

and not have "sleepy" arms.

He was so funny, when it came time for his

"vampire draws" (as we so lovingly call them),

he pulled his shirt up to expose his chest for the nurse.

Now that his port is gone, he finally gets it.

Go figure!

 We had a lot of waiting time...

 Evidently, Kean's doc, Dr. Camilo had a very

complicated patient right before us.

We know what that's like-- so we gladly waited our turn.

 And we had the hospital's secret weapon-- Miss Jen.

 Her job is to play with the kids- and play -- or dance --

she does.  Kean loves her.  Heck, we all do!

 Kean's counts look good.

I wasn't sure they would, he's been sick an

awful lot over the past two months.

But he is plugging along.

There is a couple of discolored bumps on his spine 

we are watching.

One has been there for over a month.

The other, popped up the week.

 I told Dr. Camilo, we cancer moms are

ruined human beings.  Anything strange

pops up, and we fear the worst, that cancer

has invaded our lives again.

He doesn't think it is a tumor.  It is too

squishy and fleshy (and Kean doesn't wince).

So chalk it up to another freaky thing

to add to our long list of freaky things.

You'd think by now I'd be used to this stuff.

Doctor Feelgood

We had Kean's dreaded monthly cancer screening today.

Well, actually, it wasn't so dreaded.

I think I'm getting control of my fears a bit

or perhaps, I'm just too spent to get worked up.

Either way, all went well today-- other than

taking forever.

Kean couldn't wait to get out of there.

 Notice anything funny?

Yep, he's missing his pants.

I changed his diaper just after Dr. Camilo

did a thorough examination of his testicles

(Leukemia likes to hide in testicles)--

and Kean peed all over the good Doctor's hand.

 I don't think five minutes had passed since I'd gotten him

dressed when he let loose with a gallon-- and peed through 

his diaper, his pants and MY pants.  (He was  on my lap).

I know I've said it before, but sometimes I'm just in awe 

of the glamorous life I lead.

Driving home in urine soaked clothes is always a bonus.

Here's the good news though- Kean's counts

are looking so good (right where they are supposed to be)

we don't have to go in for two months.

Here's to the month of May being stress free!

Only Our Family!!!

Clearly we can't do anything nice and easy. 

Right after Kindergarten, I took Kean for a check up

with his ENT.  He's had three sets of tubes in those ol' ears

and one of them is no longer in place but doesn't want to come out.

I'm trying to avoid more surgery, so we go in regularly to make sure

that little tube isn't causing problems. And so far, so good.

 Kean had a grand time playing trucks in the waiting room.

But geez, you should have been there for the scene we caused

in the main waiting area.

First, let me set the stage.  I never sit with Kean in the children's

waiting area.  Too many germs and germy kids.

So we always wait in the old folks area- and today we

were the only ones without grey hair.

This lady gave him one of those little Dum Dum suckers

and before I knew it, Kean had bitten off the entire sucker

and swallowed it.  Well, kinda.  He actually choked on it.

Kean is not a choker.  Until today.  He started gagging and gasping.

I jumped up, pulled him into a standing position and started smacking him on the back

and prepared to do the Heimlich.  Meanwhile, a couple of the old ladies start hollering at the top

of their lungs for help.

It was crazier than it needed to be.

Within seconds, he started screaming (to add to their screaming) and crying.

I knew he was gonna be okay since he was crying.  But he was still gagging

and mucus was coming out of his mouth.  What's up with that?  I know nothing

about choking.

Anyway, a nurse came running, a doctor and of course, everyone had to 

lookey look.

Lucky for us, they took us right back to the examining room after

the big spectacle.

 Obviously, he's no worse for the experience.

Fun, fun times.

Ouch

So it has been pointed out to me by several dear friends that I am

not keeping up on my blog.  I know.  Sigh.

It's been a rough week.  I've been sick-

then Kean started throwing up for a few days (to go with

his cough and goopy nose).

And now, for the past six days we've been dealing with

an ugly, itchy rash on his face, neck, scalp and behind his ears.

 We are used to rashes with this boy.

One of his old Chemo meds used to cause him

to break out every month.

 But this one is different-- and he's not on those drugs anymore.

 I talked to his Oncologist this past weekend when he was

throwing up but he didn't have us go to the E.R. (phew).

We had an appointment with his Endocrinologist

on Monday but get this, Kean's bus was fifteen minutes late

bringing him home from school and we were therefore

ten minutes late to the doctors office.

They told us we were too late and had to reschedule.

So there went my opportunity to have another doctor

look at his rash.

 Since it isn't getting any better, I took him 

into the Pediatrician's office this afternoon.

Sigh.  They don't know what it is--

either a virus or a reaction to an antibiotic he

was on weeks ago (rare, but happens)

or one one of the remaining drugs he's still

on but has been taking for the past three plus years.

Go figure.  Your guess is as good as mine.

Let's just hope whatever it is, he gets over it fast.

I'm so ready for this kiddo to get a break.

A Hot Mess

So do you want the good news first or the bad?

We went back for Kean's check up with his ENT specialist.

The Granuloma has finally cleared up after two months of antibiotic drops

in his ear.

That's good.

However, it was covering up what we were checking on in the first place--

the fact that the tube in his ear is dislodged and still in there.

That's bad.

But.... his doc said we can wait another six months, hope it works out on it's own

and avoid surgery.

That's good.

By the way, this snap is before the check up-- before it took FOUR of us

to hold him down.

Trust me, he's stronger than he looks.

Speaking of strong.

I'm so-- not.

Tonight was back to school night at what will be Kean's new school.

His Kindergarten teacher is darling and had each of us go around

and introduce ourselves as so and so's parent.

I stood up, introduced myself and said I was Kean's mom

and sat down.

Mrs. Hymas asked if I would take a minute and tell the parents about

Kean, since they talk about him in class every day.

Oh dear.

I got two sentences in... to the part where he is finishing Chemo

this weekend and starting school on Monday and totally lost it.

That ugly, voice gets tiny and squeaky kind of lost it.

Sometimes I don't recognize myself.

I know come Sunday and Monday - I will be an absolute mess.

So steer clear.

Kean's last dose of chemo-- day number 1,157 is Sunday.

His doctors tell me it will take a good year for his immune system

to get back to normal levels but they don't want to wait to get him

going in school.  So we are starting him the very next day.

We've had numerous meetings (another big one tomorrow) with the school

team and the hospital to prepare for this big transition.

His therapists even helped us make this little book to

get him familiar and ready with his new surroundings.

I tell him this is the bus that will bring him home to me each day.

He'll have an aid on his special bus and he will be belted in.

They suggest I let him take the bus rather than having to transition

down the road from me taking him to him taking the bus.

So we will start Monday morning with many, many big changes.

Part of me is so very excited and part of me is scared to death for him

(and me).

His Birthday Suit

Can it really be six years ago since this little angel in

the snorkel mask changed our lives forever?

He'll never understand how desperately he was wanted

and how many, many, many people prayed for his safe arrival.

 I think he must like to keep us all praying on his behalf.

He didn't feel so great yesterday and wouldn't allow me to brush

his teeth the past few days-- so this morning, when we had a follow

up with his ENT Doc for his ear, I had him check Kean's throat.

Ug.

It was so red, it was bloody.

So guess who is on antibiotics again!

Byron too.

The two boys in our family both have raging sore throats.

Thankfully, the antibiotics seem to have helped both of them.

I guess it is no surprise then, that we had a pretty low key

birthday for the little guy.

His teacher from church (he hasn't been in three plus years

so has never met Nancy) came by with the cutest book...

and floor puzzle.

The girls each gave him little gifts...

and he got the coolest ever little potty, that has a flush that 

sounds like a car revving it's engine.

Now if we can just get him to sit on it

(and be aware of the need to sit on it)!!

By the way, he did keep taking his diaper off-- but I can't

tell whether he was getting the concept or if he wanted to 

celebrate his birthday in his birthday suit!

Our good friends Pam and Rod Brown brought Rocky Road 

ice cream-- so it was a good excuse to practice blowing out a candle

(and not snuffing it out with his fingers like yesterday).

And yes, he did get what he really wanted

(sore throats or not)... a motorcycle ride

with Pops.

Happy Birthday to our little Miracle Boy.

5 Years Gone

This is one of those days I'm so glad is over.

Kean wouldn't wake up this morning

and had another one of those Hypoglycemic episodes

where he is cold, clammy, and near comatose.

My girls have it down to a routine.

Reese grabs Kleenex to hold on his finger

after I take a little blood sample,

Greer grabs the camera to document it for the doctor

and Holland gets a cup of Orange Juice ready.

The girls are truly superstars.  They got their own

breakfasts, made their school lunches and got ready and out

the door while I held Kean, tried to get him to drink and eat

and talked with the doctor.

I can't wait for his Chemo to be over and done with.

His Endocrinologist thinks these episodes will go away too.

They better.

I loose five years of my life each time we go through this.

We are lucky though, after an hour or so, he's totally back

to normal.

He had horse therapy and speech therapy and did quite well.

You'd never even know there had been so much drama in the house!

It seems we must have a magnet for drama.

Kean's horse therapist, Candice (the one who lost

her horse and the baby during birth) started having

some pretty serious pre-term labor signs today.

So guess who got to take her to the hospital this afternoon?  Me!

I was going already for a meeting and so it worked out great.

She saw her doctor two floors up from where I met with Kean's.

So quick update-- all is well with Candice and her baby.

And my meeting?  It was with the Neurophsychologist

that was trying to give Kean an IQ test when he lost 

it and then I lost it a few weeks back in her office.

She gave me the report she is giving to the state

to make sure Kean continues to qualify for therapy.

Anyway, her report was BRILLIANT!

She totally took the state of Idaho to task

for wasting time, money and resources by requiring

a child with Down syndrome who is currently undergoing

treatment for cancer to go through this ridiculous testing!!!

She's my new hero.

It was sure nice to have my exact feelings validated!

Some Answers

We had another doctor's appointment.

I can't complain about this one.

Kean didn't have to have any tests, get any shots

or give any blood.

In fact, it went about as well as a doctor's appointment can go.

We saw his Endocrinologist-- the doc who is trying to figure

out why Kean keeps having those Hypoglycemic seizures.

Typically we see them when he doesn't eat well, then takes

his nightly Chemo (which he has take fasting at night).

Then he won't wake up in the morning, is sweaty, clammy

and totally non-responsive.

It is incredibly frightening but now that we know it is caused

by low blood sugar when he doesn't eat, it has eased the fear a bit.

(I still am spitting adrenalin trying to revive him each time it happens).

Anyway, he's had several of those episodes, especially just after heavy Chemo

when we can hardly get him to do anything other than cry-- let alone eat.

 Kean threw me for a loop a month ago when he ate a ton of food at dinnertime

and then wouldn't wake up the next morning and had all those 

horrible symptoms/side effects.

Dr. Flynn put me at ease today with his thoughts that there is not something else

wrong-- but that his body is just under so much stress with the cancer that

he can't hang onto any extra energy to keep his levels up during the night.

The doc assured me this problem will likely go away once he's done

with Chemo.

Yippee!!!  Another huge reason to celebrate come September.

We did, by the way get a prescription for- and in - office training

on how to give Kean a shot in the leg to get him to come around

when he is non-responsive and won't drink orange juice etc.

Joy, another prescription to pick up (and add to our impressive collection).

Meanwhile, tonight was Holland's Medical High School's orientation.

I'm still in shock she'll be in high school next year.

Greer went with us-- and was more than willing to pose

in the perfect light after our storm.

 She's a keeper, I tell ya.

Oh the Shenanigans

I have seriously been dreading today-- April Fools Day.

Holland has been researching, plotting and conniving.

So of course defensive maneuvers had to be employed.

Reese helped me make sandwiches for Greer and Holland's lunchbox today--

hot dog buns with a big carrot in the middle, smothered in ketchup and mustard.

Yum, yum.  Tasty.

Plus a few other lunchbox surprises.

 Reese got caught up in the spirit of things and came up

with this one all on her own.

She wrapped her ankle, donned crutches, 

 smeared black marker on her toes and told 

everyone at school she had broken her foot

and was to get a cast later today.

She got away with it royally!

 When I dropped the girls off at school, I was greeted

by the friendliest drivers-- lots of waves and honks.

It continued clear to the dentist's office

where Kean got a check up today.

By the way, this time he didn't bite the dentist

(only nibbled his hand).

Progress, I guess.

 It wasn't until I got home that I discovered why

today of all days everyone was so doggone friendly:

look at what Holland plastered on the back of my car!

That girl.

She also put a cardboard cut out inside the toilet

with a hole about the size of a nickel.

cut into it.

On it, she wrote "Expert Level"

and poor Byron had to try and aim into it.

Lucky us, he made it.

Lucky you, I didn't take a picture of it.

Check Ups

What a mean mom I am-- scheduling doctor's and dentist

appointments for the girls during Spring Break so they

don't have to miss any school.

 The good news is all three girls made it in to the

"Cavity Free Club".

 Kean stayed with Grammy and Grandpa-- kicked

back and watched his Tangled.

Love these good days for all.

A Pap Smear and a Prayer

Today has been all about trying to keep Kean from 

being too miserable and getting him to eat something!!!

Stupid Chemo.

It stresses me out.

He did seem happier to be outside and sitting in the garage

on Byron's old tractor.

 I have purposely never taken Kean for a ride on a tractor,

motorcycle or four wheeler.

Otherwise, I'd be hounded all day every day by you know who.

 When Byron got home from work he took Kean on a real

four wheeler ride-- and look who he let drive part of the time!

Yikes!

 I, by the way, this afternoon had a doctor's appointment

with a new doctor for a physical and annual exam--

yes that female one.

I really, really liked the new doctor and had quite the unusual

experience.

After I got dressed, she came back in and asked if she could

say a prayer for my family.

She then held my hands and said the most beautiful prayer--

petitioning the Lord to bless my marriage, my husband, myself,

the three girls and especially Kean.

It was really sweet and the most unique doctor's visit I think I've 

ever had.

We are feeling the love.

Tonight we came home to a box full of Valentine's treats

from Grandma Kay.

 As I said, feeling the love.

The Axe

Today was one of the days I dread most.

Kean had his big hearing test-- the one

where they put him in a sound booth, hook contraptions

onto his shirt, stick probes in his ears and expect him to 

sit still for oh, like forever, listen and react to sounds

while I hold his hands in a vice grip (to keep him from pulling

the probes out)!

 He was totally in to walking and crawling up the ramp

to the sound booth-- but totally out when it came to the test.

Let's just say the doc only got a bit out of him before

he got totally fed up with me holding his hands down

and refused to cooperate.

 The doc gave me the option of a sedated hearing test

(no thanks, he gets sedated enough as it is) or we can

"practice" an interactive hearing game at home and try 

a new approach to the test in three months.

Ummm, we'll be practicing this little game to see if that works.

In case you were wondering, we both came home exhausted.

Alex Hill (from our church) came over again this evening

to play with Kean.

 Thankfully, it was beautiful outside-- so four wheeler riding

it was... that and swinging and eating and just becoming fast friends.

It's the cutest thing ever-- oh, that and the fact that

Kean calls Alex "Axe".