Tuesday, June 30, 2015
I don't know what it is about us but we never have a dull day
when it comes to Chemo at the hospital.
Just after vitals and before the vampire blood draw
we all smelled something burning and sure enough, the alarms went off
and out we had to go.
The entire adult and children's cancer (MSTI) departments
were evacuated along with the rest of the building.
Lucky for us, in the courtyard, they had these visiting little miniature ponies.
Kean thought they were "all that" until they wouldn't let him ride one.
Then he was done.
Other than that, there wasn't too much drama.
We finally got blood after a little dancing around.
His counts were crazy high-- maybe because he has a very runny
nose and his body is trying to fight off some bug. But this time
around, his counts were high enough, the Docs upped his dosage
of Chemo at home.
We'll have to go back in two weeks to check his counts and
see if he can handle it.
We also met with the hospital Dietitian to talk through why
Kean is not eating well. She figures with all the corn starch and
chocolate milk I'm getting down him and the small amount of food,
he is getting enough calories. In fact, at weigh in he actually gained
a few ounces instead of going down. Shocked me with as much of a battle
it has been to get Kean to eat.
Our Chemo date today was my dear friend Andrea Blodgett.
I met her about a dozen years ago and her children are
almost the exact same age as mine. In fact, she was pregnant
with her youngest son while I was pregnant with Kean.
We even had the same due date.
Of course, Kean didn't "follow directions" and stick to that date.
We sure have been blessed with good friends and great Chemo dates!
Saturday, June 27, 2015
We all (except for Kean) went out to an "off, off, off Broadway" play
Our friends daughter (she'll be a senior in high school) writes and
directs a play each summer.
This year it was a musical with a new spin on your favorite
Greer had a solo-- playing the Itsy Bitsy Spider
who was so sad and lonely because she scared everyone away.
Reese played Mary (who had a little lamb).
It was darling-- and we all can't wait to see what the director
makes of herself. That's her on the right passing out awards to the cast.
We all hope we can talk her into doing "just one last year".
The other "drama" of the night came from this little kitten
the girls have named Butterscotch.
They've petitioned, begged, cajoled and pleaded to let us let them
keep this little girl.
It is so not going to happen for several reasons.
So they've resorted to calling Byron Dream Crusher.
And I swear they've called him that at least 40 times over the past two days.
It's so bad, I've had to stop myself from calling him that.
Ay yai yai.
Thursday, June 25, 2015
Oh to be a kid again.
The girls set up the massive Slip n' Slide in our yard
this afternoon-- and the kids came flocking.
Kean was in heaven.
Holland (and his other sisters) sure are good with him.
They all vie to see who gets to slide with the boy.
He loves it and I chalk it up as time spent building up those
skinny ankles and working out.
You'd think he'd build up a huge appetite.
Stupid Chemo he takes on Wednesdays makes
everything taste metallic.
He won't eat much of anything.
Case in point, tonight and last night for dinner,
the only thing I could get him to eat was
bacon beef jerky.
Really. Oh, that and chocolate milk with tons
of raw cornstarch to keep his body from
crashing over his lack of food.
I don't know what I will do with myself when
all this stress over Chemo and its side effects
We are getting there.
Wednesday, June 24, 2015
Bet you didn't know today was
"Happy Sister Day".
Yep, me neither.
Greer decided to make it up.
I swear, Hallmark should hire that girl.
Actually, I shouldn't ridicule.
The girls have been doing each other's chores,
giving little gifts and decorating their rooms.
Maybe, Happy Sisters Day should be everyday!
And remember how I told you about how we had that
Habilitative Therapist come to the house last week
to help us get Kean over his hitting and pulling hair issues
and ready for Kindergarten.
Well, today he had his first official play date with a friend's son
while Dee observed and corrected.
When I asked my friend to bring over her son, I warned her
he'd be putting himself at risk.
I can't really say they played together.
Kean played alongside him a bit, wanted the toys Levi had
and eventually took turns doing tricks on the trampoline.
I was surprised at how well he did with Levi "in his space".
Here's Kean doing his trick.
Dee, the therapist said he was probably in the "honeymoon"
phase where they are both being really nice since they don't
know each other.
Of course, it probably helped that there were three adults
hovering over them, watching every little move.
We'll try again.
But for tonight, Levi should get a blue ribbon for
having a very one sided play date at our house.
Sunday, June 21, 2015
Big weekend for the Barker's... especially for Byron.
We escaped to the cabin up at Lake Cascade to
celebrate his birthday.
My brother and his family joined us-- we had fun exploring,
going to the hot springs and watching Byron open his presents.
Greer got him a bunch of mustache tattoos--
Lucky for all of us, it washed off rather easily.
As you know, this weekend was also Father's Day--
so Byron was quite spoiled in the "cake" department.
It also happened to be the weekend of the Payette River Games.
Super, super cool!!
Athletes came in to this tiny town from all over the world
to compete in stand up paddle boarding.
Our favorite was the guy who had lost both of
his arms in an electrical accident-- and he was
still one of the top contenders.
If that wasn't cool enough to watch, Greer and Holland
were invited to try their luck at log rolling.
Ask Greer how it was-- she skunked Holland
and was so, so excited to finally beat her older
sister in something.
We got home this afternoon-- and this was about how we all felt.
Kean slept in the car and continued to sleep on the couch
until I woke him up.
You know it's a successful weekend when you
get home rested, relaxed and yet ready for bed!
Wednesday, June 17, 2015
To add to our collection, we got a new therapist today.
She is (don't worry, I can hardly pronounce it myself) a
In short, she works with kids who have some... ahem,
Since Kean has been isolated for so long, he has virtually
no social skills when it comes to being around other children.
He's hit a few of the poor kids at his little therapy school on Friday
(all special needs kids) and he doesn't like anyone in his space.
So to get him ready for Kindergarten, we thought we'd better
get something going.
Today, Dee spent two hours with our family.
We even drove around all packed into our car so she could
get a front seat view of Kean:
a. getting bored.
b. pulling (incredibly hard) on Reese's hair because she sits right next to him.
Let's just say we failed our first go at her advice.
She is pretty sure he is seeking attention-- good, bad or mad.
He likes to see mom, dad and his sisters get all animated (whether praising
or yelling no at him).
Of course, when he yanked on Reese's hair, she reacted quite loudly.
We have a lot of practice ahead: ignoring him and then redirecting him.
Wish us luck!!
On the very, very bright side, we got our plane ticket itinerary
for Kean's Make A Wish trip to Orlando.
Ironically, Kean is the only one in this house not beside himself with excitement.
We spent way too much time today on the Give Kids the World website.
GKTW is where we get to stay for his Wish week.
Years and years ago, a girl's dying wish was to go to Disney World.
While the hotel and resort made the arrangements to accommodate her
medical needs, she passed away.
Evidently, a number of the resort owners in Florida got together
and said never again. They pooled resources to create GKTW--
a magical place for children with life threatening diseases to
go for their wishes.
There is so much to tell-- but here's a very few highlights:
we'll get to stay in a bungalow like this one.
GKTW provides all kinds of meal options for the families...
including this ice cream shop that is basically open 24/7.
Can you say Rocky Road for breakfast?
They have rides, shows, parties every night for the kids.
Reese is particularly excited about the Mermaid Academy.
They give you VIP passes to Disney World, Universal Studios,
Sea World, Lego Land, Gator Land, etc. etc. etc.
The characters from the theme parks come over to GKTW
in the mornings so the children don't have to deal with the crowds in the parks.
And they even have someone tuck you in at night (if you want).
In fact, every video we watched or page we read only
made us more excited.
For example, we learned they give you a parting package of gifts--
including an "amusement park passport" that lets each of us go
free for one year to several parks around the country:
from the San Diego Zoo to Lego Land, Six Flags
It's gonna be crazy fun-- and we think Kean will
totally love riding the rides over and over and over again.
Thursday, June 11, 2015
That vile word cancer has crept back in to our lives tonight
terrorizing someone I hold very dear.
Didn't know it was possible to hate something more than
I already did.
Wednesday, June 10, 2015
Oh did Kean ever have fun this evening.
The girls got out our massive slip 'n slide; placed it on the hill,
slathered it with dish soap and wet it down.
Kean didn't quite know what to think on his maiden voyage
but by his second go around- he was addicted!
This is what we call ten seconds of glee.
Holland brought him to me shivering about 45 minutes later.
Nothing like a good, warm bath to make things better.
But alas, when kids showed up from five different families,
Kean (being the social animal that he is) had to go out and say hello.
I have mentioned how stubborn he is, right?
Anyway, nothing was gonna hold him back from
going down that slide again.
Who cares he was clean and in his pajamas.
A two bath night is a small price to pay for a good night's
He must've walked up that hill five times on his own.
His therapist, Andrea, will be so proud.
Tuesday, June 9, 2015
It was toasty warm today in Idaho.
Lucky for us it was about two degrees cooler in the riding arena
versus the outdoor arena for horse therapy today.
We were a little worried in that lately, Kean just wants to
"trot, trot, trot".
With the temps near 100, we weren't 'chomping at the bit'
to run our tails off.
(apologies for all the horse references)
We completely scored in that there were about 8 tall poles
that Kean had the best time reaching out and
He'd slam them to the ground and then break out in giggles.
Good for him and good for us.
Monday, June 8, 2015
See these darling ladies?
They are the "Wish Grantors" from Make A Wish.
Tonight was our big meeting.
Now that Kean is rounding the corner to the finish line
with his fight against cancer, it is time to start planning
for his big reward, um, I mean trip.
They asked all kinds of questions about Kean's favorite things.
Likely, we will end up going to Disney World as a family.
We figure it would be the perfect marriage of his two great loves:
Maximus (the horse from Tangled) and his need for speed and
love for all things "rides"
(motorcycle, four wheeler, tractor etc.).
It is so exciting to see the planning begin.
For one, it means we are getting closer to the end!!!!
And second, it will be downright, absolutely, totally 100 percent F.U.N.
Sunday, June 7, 2015
We escaped for the weekend.
Actually, we figured Reese and Kean could be just as miserable
up at the cabin on the lake as they could be at home.
And guess what?!?!?
A little change of scenery and change of pace did wonders.
Reese amazed us with how quickly she healed and felt better
and Kean did quite well.
So -- phew!
Our neighbor Joe and his daughter Jaymie met us up in the mountains
with his sail boat.
Kean and Reese were both banned from getting in the lake
(but we did let them dip their toes in).
The boat had a little cabin (I thought we'd get Kean to
take a nap-- fail).
It was just too exciting and too noisy for nap time.
We had a grand time-- and sailed the high seas,
well, Lake Cascade for much of the day.
We figured we logged about 25 miles on the sailboat.
And yes, we were all tuckered out (and a few sun burned too).
This was our view from the cabin this morning (the day
after the big boating trip).
That's Joe down there just to the left of the big tree.
He went out for an early morning sail.
I think this weekend was just what the doctor
Thursday, June 4, 2015
I'm not quite sure whether I should laugh or cry.
It is really ridiculous how insane our lives happen to be.
Today, I have Kean crying, whining and wanting to be held
on and off all day.
Yep, the Chemo has hit.
And obviously, since that is not enough,
Reese was out on the trampoline this morning,
doing her gymnastics routine and walking along the metal rim.
She tripped and fell HARD right on her crotch.
Next thing I know, she comes in and blood is everywhere.
We finally got the bleeding to stop and saw that she had a good
She stayed on the couch for the next three hours napping.
It was when she got up to go to the bathroom that the bleeding
started again and wouldn't stop.
So we headed back to our "2nd home", the hospital.
I won't go into the gory details.
Let's just say after she was given a topical gel
and then the doctor started giving her shots in the area
"where the sun don't shine" to numb her up for stitches--
she screamed loud and long enough for the folks two towns
over to hear her!
We ended up throwing away some of her clothes
they were so bloody-- so she came home in a hospital gown.
She felt pretty darn good while everything was numb.
Her sweet sisters (who stayed home to take care
of grouchy Kean) made a candy card for her.
They are the best.
But boy howdy, when the numbness wore off
I thought we were going to die watching her think
she was going to die.
Actually, it just reinforced the fact that the Lord
sure knew what he was doing when he gave Kean
cancer and not one of his sisters.
I could not have handled them not handling it!
She is resting tonight, on Tylenol and watching a movie.
She is going to be incredibly bruised and sore.
What a way to kick off summer vacation, eh?
Clearly, we don't do anything without a bang around here!