18 Jam Packed Years

Happy Anniversary to this guy--

my guy.

18 years- wow.

What we've been through is enough to fill

several books.  But hopefully, we are better people for it.

 Greer and Reese went all out and decorated our room

to mark the occasion.

 Here's the sad part though,

Kean and I are both sick--

we stayed home today.

He with two infected ears and two infected eyes.

Me, a raging case of Bronchitis.

He's back on antibiotics (again).

I'm on codeine cough syrup and steroids to try and clear 

up my cough.

Greer says I says I sound like a dying squirrel.

You can see our batch of drugs behind the pizza boxes.

Byron brought home Pizza Hut after I ordered Dominoes!

(This is even the shortened stack.  We pawned off a pizza on the Bodily's)!

Kean and I did venture out of the house for his big cancer screens at MSTI.

I'd already cancelled a few times because of the flu so felt we should

try and make this one since by afternoon we were both feeling somewhat better.

 Typical Kean-- he ripped off every mask-- so they kept us

quarantined into a room to do vitals, blood draws and the full exam.

All went well-- his counts are good-- even though they had

to take blood twice (they messed up his first submissions).

And the even better news-- we don't have to go back for another three months!

The Best Possible Results!

I'm hoping Kean won't remember how traumatic

it was for him to go through all this hospital testing.

I tell ya, I never want to go through it again. Holding him 

down was traumatic for me!

As a refresher, Kean had a couple of seizures a month or so ago.

Lucky us, we got to spend the night in the hospital

to test his brain activity and his sleep patterns.

That miserable, miserable test showed he has moderate

sleep apnea and surprise-- his heart was stopping several times in the night

for two seconds or more.

That new, little trick earned us another trip to the hospital

to take home a heart harness monitor.

More fun times, especially in the middle of the night

as Kean woke me up time and time again to say "off"!

We finally got in to see our new Pediatric Cardiologist

(super cool Dr. Womack).  We still have to wait

to see the Pediatric Neurologist and the Pulmonary Specialist.

We got the best possible news!

And I think Kean even sensed what the doc was going to find. 

 He ran more tests and talked our ears off...

 But here are the cliff notes.

He said, and I quote:  "Bottom line, your son has a good ticker".

In other words, this mama doesn't need to worry!

Now to get through the next two appointments.

And certainly hoping for the same good results.

The "Sorta" Test Results

I've had so many of you ask if we got the results from Kean's

testing on his seizures.

Well, kinda.

We don't meet with the Neurologist for a few more weeks

but Kean's pediatrician called on Friday to say while he hasn't

gotten the official report, he did not see anything scary.

However,  (and geez, doesn't there always have to be a however with 

this kid), the sleep study showed his heart stopped several times

during the night for short durations (over 2 seconds is all I know).

So guess what?!?!

We now get to add another new doctor to our stable.

Lucky us.

We are hoping it is no big deal.  But for a kid

with his health history, we don't get to skate.

Kean's new Cardiologist ordered a heart monitor harness

for 24 hours- Monday onto Tuesday.

That's Nicholle, Kean's therapist helping

me hold him down so the technician can
put the sensors in the right spots.

 Surprisingly, it wasn't too much of a battle.

And he didn't fight it quite as much as I expected

at home.

The night was a bit rough (he woke up several times

to tell me "off").

But we completed the test without having to re-attach

any of the sensors.  So that's definitely a win-win

in my book.

We turned it all back into the hospital yesterday.

And now we all wait.

We see his new Cardiologist on January 12th.

Stay tuned.

The fun sure never ends, does it!

Our Hospital Reward

Today was one of those days where if I let myself, I'd mow my fingernails

down to nothing.

We had Kean's cancer screenings.

And even though we are now just over a year out, it still scares

the spit out of me to have to wait for his results.

Kean, of course, wasn't nervous one bit.

In fact, he fell asleep in the car and snoozed through

much of our wait to start the tests.

 It was kind of rude of us to wake him up just in time to 

stick a needle in his arm for blood samples.

But he was a trooper.

If anything, he had a harder time holding still for vitals.

That is, until we gave him a little dog to put the blood pressure

cuff onto.  He liked that.

 The clinic was getting used to a new computer system

so we had an extra amount of waiting.

Kean just decided to look cute while we waited.

 He kind of gets me with that toothless smile.

And all the waiting sure paid off. 

 Kean's counts are getting better and better

with each month.

In fact, drum roll please... we now only

have to go into the hospital for testing

every THREE months.

Christmas came a little early for this mama.

Whoosh

Big sigh of relief tonight.

We got through another day of screenings at the hospital

(checks to make sure the big C hasn't come back to torture us).

One of the best things about going to the clinic is Miss Jenn.

As a Child Life Specialist, her job is to play with the kiddos.

Kean loves her--

 and pleasantly shocked both of us by telling her some of his

favorite foods he likes to eat (without prompting).
That's a big deal, folks!

Here's the rundown.

Kean's counts are all looking fabulous.

His neutraphils (ability to fight germs) are still quite low

but slowly, slowly inching up.

The doc said once in a while it takes a kid much longer

to recover.  Guess we have that "once in a while kid".

I like to tell myself, slow and steady wins the race, right?!?!

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!

Insert Sigh Here.

Phew.

I'm so glad I was wrong.

After being up all night with Kean coughing like a horse

and a steady fever, I thought for sure we'd get admitted

to the hospital today.

Luckily, by his afternoon appointment, his fever was gone and

his tight cough had lightened up a bit.

I didn't even mind unpacking the bag I had packed.

(Try saying that 10 times fast).

 Kean cracked everyone up by motoring back all on his own

to the Vampire Chamber (the blood draw room).

 My mom, broken foot, bruises and all went with us.

She did not want me going alone.  Love her!

Anyway, the verdict?  Kean has one of those nasty viruses

circulating around.  His counts all looked great except for his

Neutraphils (his ability to fight germs)-- they were crazy low.

Dr. Camilo figures it is because of the virus.  We'll

check them again in a few weeks.

And that was it-- we GOT TO GO HOME!

Sweet.

 Finally, remember the woman in Kentucky who has been paired

with Kean and runs for him since he can't run for himself?

Look at this super cool picture of her nails.

She has a big "Blue Grass" race this weekend.

Love it and love her.

Thanks Clair.

The Results Are In...

Today was our big follow up testing at the cancer clinic.

I'm such a chicken.  I really didn't want to go by myself

in case the results were discouraging.

So at the last minute, my friend Colleen Riggs went with me.

She has always been especially cute with Kean.

 In fact, I think he has a little bit of a crush on her.

Anyway, here's the news-- my mama's intuition was right on!

Kean's white blood cell counts were back within normal range.

Of course, I've shaved off a few years of my life worrying

and the doctor isn't sure why- but we will gladly take it.

(And run.  No more testing!).

Every time Kean gets his blood drawn at clinic, he gets

a duck.  We got a good laugh over this one today.

Colleen christened him "Fabio".

Fabio Duck is just one of 80 some ducks in Kean's collection.

 Sunday night we had a grand time with this gang.

We met Brennyn (plaid shirt) four years ago

at the BSU Dance Marathon.

The football team usually shows up to build morale and give the students

dancing all night for St. Luke's Children's Hospital a shot in the arm to keep going.

Brennyn and Reese tore up the dance floor-- he mostly flipping her around.

It was so cute.

So he automatically became her favorite dance partner for the next few years.

Rob (in the black shirt) became our other dance buddy a few years ago.

And Kendra is the one Kean latched onto the other night

and didn't want to leave.

They all came over for dinner, dessert and a little cut-throat competition-

playing our new favorite game:  Cover Your Assets.

Rob smoked everyone!

Ah, life is good to us.

Pins and Needles

Kean's following continues to grow.
This kid is a super star.
Today, we recorded a half hour interview with one of our local DJ's
for our St. Luke's Children's Hospital and the Children's Miracle Network Radio-a-thon.
While I answered questions, Kean powered through
a banana, Goldfish crackers, Triscuits and Veggie Sticks.
(I guess the Chicken McNuggets I'd bought him on the way
were just an appetizer).

Kean had his big monthly testing at the hospital today.

Not only did we have a lot of waiting ...

 but our visit fell smack dab in his nap time.

 My friend and neighbor, Cathy McCarthy came along

to help herd the boy.

 And even though he has been "off" for the past week and not feeling good-

he still gave us a run for our money.

 Did I mention it was nap time?

 Did I mention we had to wait a lot today?

 When we finally went back-- his blood draws went perfectly.

Why, oh why was I worried about him losing his port?

Of course, it helped to have his favorite Cars book they

keep at the hospital.

 His vitals are all good.

He now weighs just over 41 pounds (Reese is a whopping 47 and

she's 9 years old)!

We had a lot more waiting in the doctor's office.

And perhaps that was a good thing.... it gave us time to prepare

for the crazy news.

One of Kean's white blood cell counts is "very high"--

the doctor said something weird is going on so we are 

starting some testing.

He said he is not worried about the cancer coming back yet--

but we will try and figure out what in the world this means.

I'll keep you posted (if I'm not in an insane asylum)!

Remember, as I tell everyone, there's no reason to worry

until we have a reason to worry, right?

Right?