Thriving

You will never guess where I am...

sitting in the waiting room of St. Luke's

while Byron has surgery.  He's having the

plate and ten screws taken out of his leg

(they drive him insane and constantly zing him).

At least I brought my computer and can get some stuff done.

This morning, I got to go to Kean's school

for the Kindergarten Costume Parade.

I know it will come as a shock to many of

you-- but he dressed up as a motorcycle man.

 All the little kids went room to room to show off their cute costumes.

Kean (and his aid) were always at the end

and get this, the most popular.

The kid is a rock star at school.

EVERYONE knew him and wanted to give him "high fives".

 He did great giving the kids "fives" until the last few classrooms

when he started petering out.

It was so funny to see the kids he didn't pound their hands--

and how disappointed they were.

This video is from early on when he had lots of energy.

Then it was back to the classroom for a little party.

I just love the look on his face as he gets directions 

from his teacher.

 I couldn't stay for all of it but Kean started out

at the cookie decorating station

(he loved it-- took three bites and then wanted Goldfish).

 Then it was on to the game station--

for matching and a rousing match of balloon toss.

 The final station (while I was there) was crafts.

We made little skeleton and pumpkin bracelets

(which he wouldn't wear, of course).

 Just before I left, he came over and gave his teacher "Hymas"

(nobody gets a Mrs. in front of their name)

the biggest hug.

So, so sweet.

He had a great day

(Bhyron?  Probably not so much).

Maybe, Just Maybe

Good news.

The itchy scalp and skin is settling down a bit

and we've all agreed his face is looking a bit better.

Ladies and gentlemen... I think we are turning a corner.

Finally.

Phew.

On Fire

So I failed miserably in finding a Dermatologist that would

get Kean in asap.  Trust me, it wasn't for a lack of trying.

I found plenty willing to see him in a few weeks

or even a few months.  What's up with that-- with all these rashes

do Dermatologists not keep any emergency appointments available?!?!?

Instead, I took him to see his Pediatrician.

Here's a bit of good news-  he's eating better and has

gotten back up to his "fighting" weight.

 As for his rash?  It is looking a lot better today but is

incredibly dry and itchy.  His doctor today said it looks

like a cross between the Measles and someone who has

had their skin scalded with boiling water.

Notice, the runny nose that is back.  He's had a faucet for a nose

for about three months.  It went away for about six days 

when he was on antibiotics a week and a half ago but unfortunately,

now it is back-- and as prevalent as the rash on his face and body.

 He doesn't seem to have a sinus infection but he does have

fluid in his ears.  So he is back on antibiotics (geez, four times

just this month-- can't be good).

She is putting him on a steroid ointment for his rash

and I'm hoping this will give him some relief.  I just couldn't find a pharmacy

that had it this evening (tried four-- but was promised the prescription

will be in in the morning).

His doc also spent quite a bit of the time we were there

consulting with an Infectious Disease doc.  They are

cautiously watching him (and having me watch for signs) in case

he is allergic to the Sulfa drug he is on.  He's been on it

the entire time he had cancer and is supposed to stay on it

until about the end of the year.

If he's not looking markedly better by Monday, we will go

have the Infectious Disease doc examine him.

Oh joy.  More appointments.  Here's hoping he

rounds the corner soon, soon, soon.

 Tonight we got to forget all about itchy rashes

and long, long doctors appointments

and party with about a hundred teenagers.

 All the youth from our church congregation

had hay rides this evening and ended up at

our place for a massive bonfire (yes we had to get

a permit and warn the neighbors)

and then have hot chocolate and donuts.

 Kean was totally into it.

Well, not so much the fire but the two donuts 

and cup of hot chocolate he snarfed down.

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!!!

In the Thick of It (and Cow Pies)

Thought you'd like a little update on "Plague Central".

Let's see, I'm finally better.

Reese, who was sick over the weekend is better.

Holland is getting over the gunk

and Greer is down hard tonight with a fever.

I've decided Kean, with his lousy immune system,

is catching just about everything at Kindergarten, bringing it home

and sharing the love with the rest of us.

The boy, himself, is doing much better but still

has that awful, itchy rash on his face (and is therefore a bit edgy)!

We had good news though, we had our rescheduled doctor's

appointment early this morning with the specialist he sees

for those scary Hypoglycemic seizures.

And now that he's off the Chemo (we hope he won't

have any more) we don't have to go back

for another YEAR!!  Whoo hoo!

 We had some other good news this evening.

For the past several weeks Byron has been trying

to get one of our cows rounded up to bring back home

(she's been at "summer camp" at my cousins).

She was in a pasture with two other cows who turned out

to be quite the bullies.  Every time Byron tried to round

her up, they cut her off etc.

 My studly cowboy husband has spent countless hours

trying to catch this cow!!

And tonight he got her and got her home.

We celebrated with "cow pie" cookies.

And yes, they tasted better than they look.

King Kong

Good news to pass along.

Kean has been fever free all day 

and I think that rash is looking a bit better.

Kean sure acted better too.

Greer took this picture to prove to me that

her room really was clean

before little King Kong got in there!

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)!

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.

Making Friends With the Enemy

Another surprise.

I thought once Kean had all that icky Chemo out of his body,

we'd see an end to the constant battles to get him to eat.

Um, not so.

It is as bad as ever.

So bad, I talked to his Oncologist about it.

The Doc says it is quite simple:  food has been the enemy

for so many years-- making him nauseous, tasting like metal etc.

It should be of no surprise he still doesn't trust food.

Meaning, we are starting at square one-- trying to "make

friends with food".

Any suggestions on how we are supposed to do that, please

send 'em my way.

Meanwhile, I have found one thing he is "best friends with"

(even though I think it looks and smells like vomit).

The ol' Chef Boyardee's Ravioli.

 He polished off an entire can for lunch today-

would have nothing with my fish tacos for dinner

and asked for another can of Ravioli.

At this rate, I'm wondering if investing in Ravioli stock

wouldn't be a wise move.

While the boy was napping, (came home

exhausted from Kindergarten again),

a dear friend came to visit.

She and her family are moving to Arizona.

They've been through the ringer with her husband's

brain cancer.  He's done with his treatment but 

still struggles with some of the side effects.

So if any of our Arizona friends have any connections

in the Prescott area-- he needs a new career.

One that isn't high stress, too loud or too intense.

Stupid cancer-- that ugly gift that keeps on giving!

Ug.

What I Did Not Expect

Chalk this up to those things they do "not"

warn you about when your child gets cancer!

Now that he's done with his treatment, we are 

getting out more and more.

The other night I took Kean with me on an 

errand for Byron.

He threw the biggest ever-mother-loving fit

when I tried to put him into the shopping cart.

 Yes, he looks perfectly content in these pictures--

I couldn't very well take any of him while he was

clawing at me, screaming bloody murder

and climbing up over my shoulders to get away

from the "thing".

Not quite what I expected.  Guess he has 

no memory of grocery carts.  After all,

it has been over three years since he's seen one.

On to the next adventure, eh?

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.