Tuesday, December 31, 2013
Don't know about you... but I'm thrilled 2013 is over as of tonight.
I look at it as another year closer to Kean's final Chemo date of September 13, 2015.
And today was a doozey.
One of my closest girlfriend's Mary K was our Chemo date for the day.
I needed someone to keep me calm and talking through today's roller coaster.
We started off the morning with a zinger.
Kean's port refused to give up a drop of blood.
vampire nurse tried just about everything-- doing the Hokey Pokey dance and even
having Kean flop down on his back.
They finally ordered TPA (I think it breaks up blood clots) from the hospital
pharmacy. We waited. And then we waited another half hour to let the drug
do it's trick.
And trick it did. We finally got some blood.
But dang, that blood showed an abnormally high level of phosphate or phosphorus
(silly mom, I didn't retain which one it was).
Anyway, that meant for more blood work while he was under.
Yep, he went under again today-- for the ol' Spinal Tap to put
Chemo into his brain and spine.
Ah, but that wasn't the end of the fun and games for the day.
He finally got that Ultrasound on his testicles (notice I didn't take a picture
showing his privates-- wouldn't want to humiliate him any more than he already was today).
His doctors have been concerned for many, many months that one of his testicles
had ascended. Come to find out both have.
If they aren't brought back down into place, get this, he is at a high risk
for testicular cancer. Just what we need.
So now he will have to have surgery to have them moved into place.
We don't know when-- we have to see a Pediatric Urologist
and then she will decide (along with his Primary Oncologist) if
they should do the surgery now or if they dare wait until he is through with all of his Chemo in 2015.
I asked Dr. Camilo (Kean's Oncologist) if this surgery will be a big deal.
He looked at me and said "Lonni, after all he's already been through
this won't be a big deal."
Which when you think about it-- if we hadn't already been down the
cancer road and I was facing surgery for my son to prevent Testicular cancer-- I'd
be one freaked out mum.
But because of where we've been, my attitude is dang, he has to have another surgery.
So I guess that's progress.
p.s. Dr. Camilo called me on the way home from the hospital
to let me know the second blood test showed everything was fine.
Just must've been a fluke-- or an evil trick by some lab tech to stress
out an already stressed out mom.
Again, glad 2013 is in the rear view mirror.
Monday, December 30, 2013
We decided to play it a bit fast and loose tonight and went
out to dinner as an entire family.
That means, we took Keanut out on the town.
Call it a birthday present to his mom.
We went to Joe's Crab Shack and ended up sitting in the cavernous
bar-- away from the crowded (kid filled) restaurant.
And yes, we over-sanitized the table and the high chair.
I'm quite certain I came across as one of those neurotic mothers.
At least our girls thought we were cool-- well, actually naughty-- letting them not only sit
At least our girls thought we were cool-- well, actually naughty-- letting them not only sit
but eat dinner in a bar!
The best part was when a couple of the waitresses came over
to sing Happy Birthday and got the girls to join in.
They decided to sing the "short version"-- so all squatted down on the floor
while they belted out the tune.
It was pretty entertaining.
Thanks everyone for the avalanche of emails, messages, phone calls and cards.
Shucks, y'all sure know how to make a girl feel loved!
Sunday, December 29, 2013
It is official.
We have an addict on our hands.
At our family dinner tonight at my parent's house... all
Kean wanted to do was watch (yes, you are right) Cars.
Grammy set him up in their bedroom in front of Grandpa's mondo television set
and in Grandpa's big chair.
For half of the show, he was in there all by himself-- totally engrossed.
Geez, you'd think it was his first time ever seeing the movie
(not his one thousand and first)!
My sweet niece, Katy surprised me with cupcakes.
An entire herd of baby sea turtles.
They were almost as fun to look at-- as they were to eat.
Saturday, December 28, 2013
Fun day for Byron and Holland.
They've been working to get an old snowmobile up and running--
and last night: Eureka!
So as a reward for all their hard work, they ran
up the mountain this afternoon for a few hours
of sledding in the snow.
Here is the old snow machine-- that still has a few kinks to work out--
but it runs!
Kean's been in a needy mood since he woke up
from his nap-- won't eat, just whines.
Personally, I think he's rather miffed that he didn't
get to go "motorcycling" in the snow with his dad.
Someday, Kean. Someday.
Friday, December 27, 2013
So I'm a little late but I didn't want to let Christmas go undocumented.
It was wonderful.
Greer and Reese woke up at some obscene hour-- so we made them go back to sleep.
But it actually worked and they didn't even get up until 7 a.m.-- which is a record
for our family.
Someone was pretty sneaky and pretty great-- we found this on our front porch--
a basket full of treats, goodies and a gargantuan Cars night light that has it's own
remote control to get it to say such phrases as Kazaam.
Kean loves it!
So thank you to someone out there who was so kind to our family!
Thought you'd like to see Greer's face as she saw that Santa had really come.
The man in red brought Reese a bike-- almost as big as her..
and bean bag chairs for each of the girls...
We were especially blessed to have my parents and our
dear, dear friend, Shannon Angus join us for the Christmas frenzy
and then breakfast.
It was a lazy, crazy day all about family.
Here's hoping your Christmas was just as wonderful.
Thursday, December 26, 2013
Okay, back to the blog.
We've had a few extremely busy-- but fun packed days.
Let me try to get caught up by starting with Christmas Eve.
One of my favorite traditions, is we all get together for a feast
of nothing but appetizers and desserts.
Since we always do a huge dinner on Christmas Day... we gotta do
something different and I love this!
We also, always have the kids act out the Christmas Pageant.
It always leans a little more toward the entertainment side than the spiritual side.
But what do you expect with Byron always, always acting as the donkey.
Notice I used the word donkey instead of that other word that probably
came to your mind-- naw, never!
Reese somehow beat out the competition to play Mary
and now that Kean has outgrown the Baby Jesus role, we used a doll.
Which was the smartest thing we could do-- since the boy
is not the most cooperative. He and Elly were supposed to be
Instead Kean muscled his way into the center of the Wisemen.
I think he liked their shiny baubles...
The children also always get new pajamas from Grammy and Grandpa.
We all decided Kean's made him look like he was wearing a
penal institution issued jumpsuit.
Of course, when he grabbed the lid to the Christmas Pageant costumes--
we thought the outfit was complete!
The best part of the night came when Grammy and Grandpa gave Kean
his gift from them.
The kids all went on a scavenger hunt that led them to the master bath--
where this was waiting!!!
I'm not sure who was more thrilled-- Keanut or all the cousins and his sisters!
I'd love to know what was going on in his mind.
He seemed in awe but also a little awe-struck.
He spent most of the night admiring the stickers, the hood and the wheels--
but wanted nothing to do with getting behind the wheel and going.Give him some time.
By summer, I'm guessing he'll be running down Reese on the lawn.
Monday, December 23, 2013
One of the other moms at the Nutcracker yesterday
slyly took some pictures of the girls onstage.
It is really hard to see... but the girls are on the right side
of the picture sitting on a couch.
It was quite the experience for all of us!
Giddy would be the word to best describe the emotions in our house.
Reese is about beside herself with excitement for Christmas.
Tonight, they made Rice Krispy holiday houses.
Kean had a grand time supervising and making sure the candy
they were using to put on their houses was good enough.
We can now add gum drops to his list of favorites.
One final note, a lovely article came out in the Boise Weekly
on our refugee efforts and Christmas party.
If you're starving for something else to read and you
have no presents to wrap...
here's the link:http://www.boiseweekly.com/boise/peace-on-earth/Content?oid=3025563
Sunday, December 22, 2013
Today was the big stage debut of the Barkette's.
We had to have them to the theater about an hour early
for hair and makeup. Here they are just before they were taken backstage.
The girl in the pink jacket is one of our friends from another cancer family.
We weren't allowed to take pictures of the Nutcracker once it started...
so all you get is the curtain...
and a pretty poorly lit "selfie" of Byron and I.
But let me tell you the girls had a blast.
With their hair in ringlets and their beautiful costumes on-- they
were on stage for a good 15 minutes.
They walked in with their stage "mom and dad", greeted the other guests,
gathered for an old fashioned photo while on stage and then were escorted
over to a sofa where they watched the professional dancers at the party.
Their handlers brought them to us at intermission where they joined us
to watch the rest of the production-- which was wonderful.
We loved the sets, the costumes and of course the dancers.
Each of the girls were given a Ballet Idaho gift bag which contained
a Nutcracker cast member t-shirt, a beautiful book and their very own nutcracker.
And I guess this should not come as a surprise to anyone--
but the re-enactments have already started at home.
Saturday, December 21, 2013
I have to say one of my very favorite things about the holidays are the traditions
that have emerged and stuck year after year.
Tonight was one of them.
Each year, a few days before Christmas, Byron takes the
girls out shopping to buy presents (for each other and for me!!).
They always have dinner out- so the girls love it
and love having daddy time.
Kean and I have had a not so quiet night at home.
He is feeling good and in great spirits.
We've spent the last hour playing copy cat.
Let's see, he's made frog, cat, bird, duck, lion, snake,
monkey, pig, cow and horse sounds... and kept me
laughing all the way.
Mister Miracle is quickly turning into Mister Personality.
Tomorrow's the girls big performance in Idaho Ballet's
Friday, December 20, 2013
We got the sweetest surprise in the mail today.
But before I tell you what it was.. I have to tell you who it is from.
Twenty years ago I was working as a reporter in North Carolina.
I worked with a pretty spectacular group of people-- many of them
are dear, dear friends to this day.
Just after midnight on December 7th, 1991, our news helicopter
crashed coming back from the state championship high school football game.
Our sports director, Tony, miraculously survived the chopper plummeting from
the sky the equivalent of a 150 story building.
Three of the greatest guys you'd ever want to know were killed
on impact. All four of the men on board were engaged to be married.
It was a gut wrenching, heart ripping and life changing experience
for so many of us.
My roommate, Diane was one week away from marrying our pilot who was lost.
So I had a very front row seat to the sorrow of the families and the fiancees.
One of the fiancees left behind was Lisa-- who thankfully, later
met and married an exceptional man-- Danny.
Today, our little family received a package from Lisa and Danny.
The girls squealed with delight when they opened up this-- our
new favorite Christmas ornament!
In their letter, they wrote that since they don't have any children, they
often find themselves living vicariously through their friend's families.
Since they read this ol' blog, and have followed our ups and downs and our good
and bad days-- they were wondering if they could be part of the Barker clan.
We welcome you with open arms!!!
Thursday, December 19, 2013
I suppose by now I should not stress over the fact Kean pretty
much refuses to eat after he gets his Methotrexate on Wednesdays.
I'm told the medicine makes everything taste metallic.
And even though the boy looks so happy and cute in these pics--
I tell ya, it's all smoke and mirrors.
He fought me by throwing everything I gave him today-- except.....
dill pickles and ice cream.
Um, not together (like the well known pregnancy craving).
Just one after the other.
Oh, that and a few bites of pears.
Speaking of food-- here I thought I was all done and ready for Christmas--
until Holland reminded me yesterday she and her sisters need
presents for their teachers, bus driver etc.
So today and tonight we made Salted Caramel Sauce.
If their teachers don't like this liquid gold... they have no taste buds.
It is killer.
Wednesday, December 18, 2013
Guess what I missed today?
Kean taking six steps all by himself!
I had to go get an MRI for my blasted back (thanks to that lovely car accident-- I
have a herniated disc).
Robin Clark came over- got the girls ready for school and stayed
for Kean's first therapy session.
I got a text just before I met with the doc (who told me I need
to stop lifting and carrying anything heavy-- hah!)... saying
Kean took six steps before he realized his P.T. Andrea wasn't holding onto him.
And get this, no matter how hard Robin and Andrea tried to get Kean to
walk a step or two again-- no luck.
Maybe there's hope for my back-- and we will get him walking soon.
I did make it home in time for therapy session number two.
He just loves playing with Maureen--
and popping bubble with his mouth.
The girls had their technical rehearsal tonight at the Morrison Center
for their big debut in Idaho Ballet's production of The Nutcracker.
Here they are mugging with the Mouse King.
His costume was quite cool up close-- his crown is a cheese grater- by the way.
Eight girls from cancer families will be special
guests in Sunday's two shows.
Two of the other girls are their friends from the Camp
Rainbow Gold's weekend retreat we just went to-- so that made it really fun.
The girls will be guests at the Christmas party
that is at the opening of the play.
They are giddy.
Byron and I have been given tickets and the girls will join us after
intermission to sit in the audience.
I have a feeling this is going to be one of those super memorable
experiences for the girls.
Tuesday, December 17, 2013
We are back in town and trying to survive the last week of school-- projects
parties and concerts galore.
Kean had therapy school yesterday-- and according to his therapists
he had his best day ever (even though he ran our of energy again).
Greer had her big orchestra holiday concert - she is standing smack
dab in the middle-- looking all serious.
When we took off for our long weekend to to go Camp Rainbow Gold's
Family Winter Retreat-- it seems like we missed about half a million
Christmas parties, open houses, orchestra practices and on and on.
And you know what? Part of me was quite relieved to be out of town.
Every year the Christmas season seems to become a bigger and bigger blur
as we try to make it to way too many activities and events.
It was refreshing to spend a chunk of the days leading up to Christmas
focused on our family.
I've come back home with a lot less stress than if I'd stayed home.
p.s. as part of my de-stressing-- this is the closest we'll
get to getting Christmas cards out this year.
Merry Christmas everyone. Happy holidays and
here's hoping we can all take time to enjoy being in the holidays-- not blurring through them.
Monday, December 16, 2013
Words sometimes can be so lame.
I just can't begin to describe how wonderful our get-a-way weekend was for our family.
It was the perfect mix of rest and relaxation, activity and play.
And Kean LOVED being off house arrest and with "his people".
We didn't take pictures of many of the things we want to remember--
the long snow shoeing expeditions, restorative yoga, fitness classes,
crafts galore, scavenger hunts, raiding other families cabins to leave them
fun treats and more Christmas decorations, great food, and a Clydesdale drawn
sleigh ride through the trees (with a couple of old cowboys-- guiding the sleigh and one singing and playing a banjo) and on and on.
We all had our favorite moments.
The girls loved everything-- including the talent show on the last night.
Here's Reese doing a dance number with Jaime-- the counselor
assigned to our family.
That's Holland's hand and arm on the right-- feeding one of the volunteers for a skit.
Holland also brushed her teeth, applied make-up and did Kathy's hair.
I haven't seen Byron laugh that hard in years.
And poor Kathy-- I think she's still trying to get the mascara off her chin.
On the final night, we all wrote our wishes, hopes or prayers on paper,
tied them to pine cones and threw them into a fire to send up to heaven.
Since every family there had either lost a child to cancer or
was or is battling the disease... I'm guessing many of these
pine cones had messages similar to mine.
One of the many highlights for me, was Parent's Night.
All the kids went to the lodge for a huge Christmas party and carnival.
Kean and a few other toddlers were taken upstairs for treats, a movie and lots of playing.
This, while all the parents met for what became a cry fest.
We were asked to share our story-- what brought us to Camp Rainbow Gold.
Byron and I were the second from the last couple-- which meant ten other
families went before us-- to tell their stories. I started crying
when the very first couple talked about losing their son in September
and didn't stop even when it was my turn.
Once again, words fail.
But it was a beautiful, bonding, therapeutic experience.
These families were amazing.
What an honor it was to be with them at camp.
Amazing and oh, by the way, competitive.
We played all kinds of games-- and had the mother of all gingerbread house
I have to admit, we were quite intimidated by those who had finished
their houses early.
We decided to play homage to the sleigh ride we took through the woods.
With the help of two of our counselors-- Jaime and Brian-- take a look
at what we came up with.
Surprise, surprise-- we won second place!
It was the little things that made it so special.
Moments, I could write a book about.
But here's one I'll share.
As I mentioned, Jaime was assigned to the Barker family.
She helped with the girls while Byron or I stayed with Kean for naps.
She checked on us, ate with us-- and oftentimes, wouldn't even let
us clear our plates!
On the first day, Jaime and Greer got talking about their two great food loves:
Bacon and Maple donuts.
After each meal, there is a tradition at Camp Rainbow Gold-- anyone
who wants to, stands up to "shine"-- meaning they get to wear a crazy hat,
take over the microphone and share a shine-- something they love about camp
or someone they want to spotlight.
Greer and Jaime started saying that they wanted to shine for Maple Bacon donuts--
and, well, lets just say it went viral.
Everyone by the end of the weekend was shining for Maple Bacon donuts.
On our last morning, take a look at what showed up-- clear up in the mountains
of Sun Valley-- fresh Maple donuts with yummy bacon-- thanks to
Jaime and the camp organizer, Jason.
Jaime and the camp organizer, Jason.
As I have already said, words fail.
Everything and I mean everything was thought of, done for
and made to make us feel loved and special.
As Jason Hosick-- the big guy in charge said--
we were where the air is thin but the love is thick!