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.

The Results

Well did we ever start today off with some excitement.

About five minutes before Kean's bus came, his very first tooth

decided to exit his mouth.

I think Kean was a bit perplexed as to why Reese and I were 

so very excited.

 This afternoon we had his monthly testing at the hospital

to make sure that ol' enemy-- cancer is staying away.

Since this will be his last time using his port (he has surgery

on Thursday), I thought I'd walk you through how it all works.

After we numb it up at home and the nurse takes off

the "sleepy cream", she has to clean it with a very stinky

astringent.  My dear friend Pam Brown went with us today

and as you can see has to hold his hands and head up and away.

(We actually had to sanitize his chest twice because Kean licked it.

Ewww.  Gross-- if it tastes anything like it smells!).

 The worst part is usually inserting the thick catheter needle--

I don't think it really hurts him-- it is probably just some pressure.

But basically, inside his chest (we call it his third boob) is the port--

which I like to think of it as a rubber filled thimble.  The port

is connected to the main artery leaving the heart-- so all the Chemo

he used to get would go right into that main artery.

In today's case, we used his port just to get blood for all the 

tests they ran.

 However, once again, his port decided to live

up to it's nickname:  Persnickety Port.

He probably had some clotting or film grow over the port--

so the poor nurse could not get any blood- no matter

how hard she tried or how many different positions we put Kean in.

 Even though we earned an extra hour to our visit

(they had to order and administer an anti-clotting drug- TPA

and then wait for it to work- which it did), Kean was soon

all smiles.

 Love this picture-- gappy smile and all.

 Miss Jen- his favorite Child Life Specialist (it is her job to play with

the kids) gave him a darling red sweater as part of the Red Dress Project.

A little girl died of cancer a few years back.  This little girl

LOVED everything about red dresses.  When she died and her friends

asked her parents what they could do to help-- they answered donate red

dresses.  They now give out hundreds of red dresses each holiday season

to little girls fighting cancer and red sweaters to little boys.

By the way, that hard to get blood carried good news.

Kean's counts are looking good.  No worries and his immune

system is slowly starting to build.

Here, here!

Cancer: the Gift That Keeps Giving

Oh do I ever have a lot to catch up on.

There just hasn't been time.

Last Thursday, we had another one of Kean's big post-Chemo

check-ups.  It is hard to believe it has already been a month.

Even though we don't really have "Chemo" dates anymore, Kean

still had two babes on his arms.

Holland and her friend from school, Lauren came along

(to interview one of the Clinical Dietitians for a school project).

 It was so nice to have "Hottie"  (Kean's version of Holland)

along with us.

She must have been a good luck charm.

We finally had no problems drawing blood from the boy.

 We saw Kean's primary Oncologist- Dr. Camilo

and he has no idea what it causing the awful, itchy rash

on the boy's head.  Everyone seems to think it is either a

virus or a reaction to a sulfa drug Kean has been on for three plus

years (and is supposed to keep taking until the end of the year).

We also set up a bunch of sedated testing on Kean's heart.

Get this, one of the Chemo drugs he was on causes heart damage.

And the possibility of the damage doesn't lessen with time-- he

will have to have his heart tested regularly for the rest of his life.

That #$%@ cancer-- the gift that keeps giving!

 On to better news-- Holland's school put on a big

Haunted House.  Holland was recruited to be a scary doll 

come to life.

And let's see on the school front, we've been pulling Kean

our of Kindergarten each Friday to keep his intense therapy

(OT, PT, and Speech) all in a row.

We had our big yearly review.  Kean for the past month

has 1.  been exhausted for all of his therapies

and 2.  has made it clear he does not want to be there.

So we have decided to take a break and call off these

therapies to hopefully get his energy level up and to find a better day 

in a few months where he can be around more children at his level

(the kids who are there on Fridays are very delayed and that has 

only added to his frustration).

Let's face it, after three plus years of house arrest-

this boy is ready to be social.

And he was all smiles as he said goodbye to his

therapists.

 And finally, I will be trying to get ANOTHER doctor's

appointment tomorrow with a Dermatologist

to look at Kean's rash.

 I don't know that it looks worse tonight but it is certainly

more itchy.

We were up at the cabin for the weekend and

poor kid woke up every two hours to protest

and let us know he wasn't happy.

I'm done with this waiting game and trying 

to keep him calm while it clears up.

Three weeks is too long!!!

We're Baaaaccckkkk!

Clearly, either we missed our friends at the hospital or they missed us.

Because back we went today 

for an unexpected visit.

 Kean's rash isn't getting any better and early this morning

the fever that started last night surpassed that magical

101 number and off we had to go to the hospital.

 This was our view for several hours after seeing the

doctor.  We had to wait until they got control of his fever,

his elevated heart rate settled to an acceptable number

and for him to get a heavy dose of antibiotics and

fluids.

 Poor boy was shivering so much, we bundled him up

in three warm blankets.

Can we say sauna?

The good news is he was very, very snugly.

The even better news is-- Tylenol works wonders,

he is somewhat better tonight (and we will gladly take that)!

No Shots

We headed down to "our" hospital again --

this time not for any shots, appointments or anything icky.

Kean was invited down for a little luncheon.

Problem is, he wouldn't eat much.   

Okay, just fruit.

My mom is quite patient with him.

We were invited down to help showcase the school in the

children's cancer unit.

 While Kean never went to school here, Colin, one of the teachers

was huge for us in getting everything set up for Kean to go

to Kindergarten.  He even attended meetings with Kean's principal and team.

He is a great, great guy.

 I don't think Kean could quite figure out why we were there

and not getting poked, prodded or meeting with his doctors.

He was pretty into the super cool shark backpack they had for him

(filled with fun school supplies).

And get this, as we left, just out in the children's lobby,

the owner of the local Ben and Jerry's ice cream shop

set up and was handing out free cones or cups. 

Quite atypical of our visits to the

hospital in the past.

But we will totally take it.

The First Hurdle

I don't know that today could get much bigger.

Shortly after Kindergarten, we whisked Kean off to the hospital

for his first check-up and testing now that he is done with Chemo.

He was tired but happy to see his nurses, doctors and friends.

 Of course, we Barker's don't know how to do anything small or boring.

Kean's port once again decided not to cooperate.

Initially, we got some brown blood (not a good sign) and then

his port just up and refused to share any of the red stuff.

 So he earned a dose of TPA, which earns all of us a good

extra hour of ordering the stuff and then waiting for it to "un-clot"

his port.

And thankfully, it worked!

 We met with Kean's Oncologist and had a very interesting conversation

about what the chances are that his cancer will come back (about 15 percent)

but, and this is a big but, new and huge developments in the cancer world

have come up with a process of re-engineering T-cells to attack the cancer cells

and they now have a 95% cure rate (instead of 60 something).

So that was quite a comforting conversation.

Kean's counts look good, they'll continue monitoring and testing him

every month and I will work on relaxing and not living in fear 

of the big C coming back to my boy.

As we finished up the exam, Kean was led down the hall...

 to the Chemo suite where many of the nurses and staff members 

were waiting.

And I think you will understand why this is my new favorite song!

So, so cute!

Kean was hilarious-- eating it all up. 

 My two favorite moments?

When he took the tissue paper out of his present and took off

like a champion waving his flags to the crowd.

 (They gave him a bear, a train and a hand made blanket).

 And then here's my second favorite moment.

He walked over to his regular Chemo chair, clapped his

hands (as if saying let's get this show on the road)

and hunkered down for Chemo.

Oh what a silly boy.  It will sink in one of these days.

 After all the excitement, we headed up to the 4th floor

to see for the first time the Hall of Heroes portraits all hanging

on the walls.

 It was powerful

And the perfect way to finish off the day.