What a Reunion

Nothing like starting the ol' family vacation off with an overnight trip

on unknown roads to the E.R.

 Yep, our little frequent flyer decided to have us try out a new

hospital-- St. Luke's Magic Valley in Twin Falls.

We had just arrived Friday night at our Leavitt Family Reunion

when Kean woke us up sounding like a seal barking--

darn croup.

 All I can say is thank heavens for modern medicine and steroids.

Kean was breathing fine and wired with energy (mom and dad were not)

by the time we got back to our camping spot-- just in time for breakfast.

We gathered at 1000 Springs for my dad's family reunion.

We had our entire crew there-- except my niece who is serving

a mission in Oregon.  

Even my younger brother, Marc and his family made it from Texas.

And it was if these cousins hadn't been separated at all.

The reunion wasn't just for our family but for my dad's side--

all of my aunts and uncles and cousins.

These are my cousin's kids-- mixed in with our kids.

And I'll tell you, it didn't take long for them to bond and

become besties.

We camped at the coolest place-- right along the snake river

and across from several gorgeous waterfalls.

We packed in the fun.

That first full day (after our all night hospital visit), we toured

an old dairy museum .. where Kean was quite lethargic.

 Uh... but not the girls.

 Byron, our girls and a bunch of cousins, trekked up to a waterfall.

 These three had to show off the dirt they worked so hard to get.

 Kean perked up for the other days.

He ran us ragged and LOVED swimming in the hot springs pool.

 I was really worried about camping next to the river

 but once he felt how cold it was (and it was)--

he was fine staying out.

The girls were a different story.

 We just partied all day and all night.

My sister-in-law led us in a rousing evening of Bingo...

with a prize table that kept us oohing, ahhing, giggling and teasing.

In our opinion, Kean came away with the prize of the night--

a new Curious George DVD.

 The highlight for me was a 3-hour trip I took on paddle boards

with two of my cousins.  

Sorry, after Kean threw my cell phone in the lake last summer,

I left it in the camp trailer!  No pictures.

I did get pictures of Byron and Reese coming back from their trip.

 We all took this trek across the river and around an island.

 We saw monster sized trout, and massive waterfalls.

Some parts were so lush, we felt almost like we were  in Hawaii.

It was that gorgeous.

The kids played non-stop-- every game you can think of.

One of the best was "flour dodge ball".

 They pelted each other with nylons full of flour

and came out looking like extras from an I Love Lucy episode

shot in a bakery.

 These kids would get dirty or hot or sweaty-- then cool

and clean off in the river.

Rinse and repeat.

 I think these kids maybe, just maybe had some fun.

 I know I did.

I love, love, love my aunts and uncles and cousins.

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?

I Got To Be A Normal Mom Tonight!

This is a horrible picture because it makes it look like 

Kean is in pain.

He's not, he's just not excited about going to bed.

But he does have a good ol' fever tonight, a horrific

runny nose (yep, it never really went away)

and his face is starting to look slightly rashy again.

Ug.

But here's the bright side.

Even though his fever was over  101-- 

I didn't have to rush him to the hospital for once

AND... I got to give him Tylenol.

Now that his port is out, I get to treat him 

like a regular toddler with a fever.

It has been years since I've gotten to do that.

And even though I'm a bit nervous about this fever

(I will be for every fever for the rest of his life),

we will just see what happens.

Plus, we are already going to the hospital tomorrow.

Can you believe another month has passed

and it is "Scanxidety" time again?

(Tests to make sure the cancer is staying away).

The Third Boob Is History

Ah, Kean is one brave boy.  Either that, or he is completely numb 

and checks out each time we are in the hospital.

 He breezed through today's surgery.

Probably, because we had Grammy along for moral support.

 He had to wait (fasting) for hours before they came for him.

They let me dress up in what looked like a garbage man suit,

go back in to the operating room and hold him until he got

enough gas and was out.

 His surgeon said all went well and he came out of the anesthesia

with no problems (just an extra dose of grouchiness).

Oh and did I mention he was hungry and thirsty--

4 pieces of bacon were the appetizer.

 I thought you'd like to see what his ol' port looks like.

The purple part with the rubber insert is what caused the bump in his chest.

Then, the tube (it is cut short) threaded up his chest and connected

up near the right side of his collar bone to the main artery

that leaves the heart.

Much of his Chemo was administered through

this little device.

It will make a great show and tell some day.

Finally, a memory I'll want to hold on to forever is this:

as we were leaving this morning Reese got up early to smother Kean

with goodbye kisses.

She told him when he comes home tonight, he won't have his port anymore,

he won't have cancer anymore but...

he will still have Down syndrome.

It was hilarious.

That girl.

Downs and Ups

No dull moments

should be our mantra.

Lucky us.  Kean and I got to spend

much of Thanksgiving Day in the E.R.

After poking, prodding, X-rays (I refused to let

them catheter him for a urine sample)-- they determined

he has Strep and a virus.

Poor little guy.

 By the time we got to my parents, dinner was done

but leftovers still tasted heavenly.

 My Aunt and Uncle joined us-- along with lots of cousins.

And Kean perked right up once he got away from the hospital

torture chamber.

 The day after Thanksgiving, we have a tradition with all of

my cousins- we head up to the mountains, sled, snow mobile, play

in the snow and cut down Christmas trees.

My parents kept Kean so the rest of the family could go.

And Reese scored on finding the best tree.

No Charlie Brown Christmas tree for the Barker's this year.

Plus, we are thrilled to have a live one again.

We weren't able to have a live tree for the past three

years because of Kean's health.

Things are slowly getting back to normal.

A Stay of Execution

Boy am I ever tired.

My day started before the sun.

We had one of our celebrities from Baldapalooza in town and

appearing as a guest on our local NBC station.

Stuart Edge is known for his pranks, magic tricks and video stunts.

He has - get this, over two hundred million hits on his videos!!!

Crazy.

 He did a great job and we had a lovely breakfast afterwards

where he completely stumped us with his magic tricks. 
I'm still scratching my head.
See if you can figure it out.
https://www.youtube.com/watch?v=mBp0MOSdEL4
After breakfast and after Stuart looked at my ring and then it 
somehow ended up on his key chain in his pocket (what????)
I rushed home to get Kean
and head to his first doctor's appointment.
We went to see his ENT-- Kean is on his 3rd or 4th set of ear tubes.
This latest set has fallen out but one of them is stuck in his left ear somewhere.
We've been hoping it would work its way out and avoid surgery.
Today was the big decision day.
However, he now has a "granuloma" blocking his ear so the doc
couldn't see if the tube is still there.
So he is again on anti-biotics and we go back in a month.
Here Kean is with his favorite nurse from that office, Carlene.

Then we headed over to "our" hospital for blood work, 

a doctor's appointment and a check on his counts.

He sure gets spoiled when they take (in today's case, try and take -- we had problems)

his blood.

Let's just say there's lots of singing, dancing and bubbles

in the Vampire blood room.

Kean's counts are good-- where they should be for a kiddo

on Chemo.  We were a bit worried-- his docs had upped his

Chemo levels and his counts were too high last time.

My dear friend, Julie Kingsbury came with us today and sure

helped us get through this crazy, long day.

I had to share this cute, cute picture of our little guy

that Julie took.

While we waited for the hospital pharmacy to get his meds

ready, we took Kean up to his old 4th floor stomping grounds

to see some of his favorite nurses-- Joe and Kate!

Long day but a good day-- we are getting closer to being done!