Reincarnated As A Mother

Friday, December 19, 2014

Illumination

I didn't take any selfies of Kean and I today-- the ones that
would have shown him whimpering, grimacing and boring his head into my chest
in pain.
Can I vent and say again how much I hate, hate, hate cancer.
I swear this has to be as bad as water boarding-- having to watch
your baby suffering.
He had stretches where he put on a happy face--
thank goodness.
Otherwise, I think I would have checked myself into you know where.
Tonight, just after 8, he told me he wanted to go night night.
But at least now, I have some insight into how he is feeling.
I met a girl up at Camp Rainbow Gold's Family Winter Retreat--
an eleven year old who has Kean's same kind of cancer and is
in the same phase of treatment he's in.
I had her go through each drug he's on and tell me what it feels like.
So in case you are wondering, the two Chemo drugs he took Wednesday
and the third one he takes nightly:
1. makes every bone in his body hurt.
2.  makes all food taste like metal.
3.  makes lights and sun hurt his eyes.
4.  makes sounds hurt his ears and head.
That last one is particularly problematic, with three very loud sisters.
Gotta work on that.
Here all this time, I thought his reacting to noise was a Down's thing.
I'm still learning and I'm still praying we get through this.
One day at a time... right?
But I do owe a thank you to one brave girl (thanks K.T. for
sharing with me) and to my friend Teresa Peery who
brought over a huge tub of Vanilla ice cream tonight for Kean.
He's caught on to me serving him yogurt mixed with frozen berries
when he asks for ice cream!

Thursday, December 18, 2014

The Contortionist

Bet you've never seen anyone get into their seat like this before.
Kinda wishing it was an Olympic sport.
He'd have it hands down.
p.s. day one after heavy Chemo and he's not too bad.

Wednesday, December 17, 2014

The Third Boob

How's that for a headline?
But for once, you can really, really see Kean's port
(what we call his 3rd boob).
We were at the hospital for half the day for heavy chemo
(in his brain and spine--yuk).
But it went surprisingly smooth. 
Grandma Kay (Byron's mom) and my good friend Jeanie
Stidham were our Chemo dates for the day.
 And we had the easiest time ever getting Kean's port
accessed and getting the blood to flow.
(Tender mercies).
 Kean surprised us all with his vitals.
He's grown taller and gained just slightly over a pound.
His counts were even high-- a little too high-- so two of his
main drugs were upped (he's taking a higher amount).
That hasn't happened very often over the past 2 1/2 years.
 We had quite the "reunion" day.
First, we ran into two of the families we had just spent several
days with last week at Camp Rainbow Gold's Winter Retreat.
Then, Jason, one of the heads of Camp and the guy we lovingly
refer to as the Pied Piper (my kids adore him as do all children)
stopped in.
And finally, we had our favorite Respiratory Therapist,
Sabrina assigned to us today.
Her brother Joe (who we got to see today too) was
one of Kean's most beloved nurses when he was so sick
for all those months.
 The drug they use to put Kean under for his procedures
is supposed to wear off after fifteen minutes.
It took Kean a good hour to come out of it today.
I look at it as he got a much needed nap.  Too bad I couldn't join him!
He's doing pretty good tonight considering all the gunk he got
poured into his body.
We had a quiet evening at home.  Bryon, Grandma Kay and Holland 
all went out to dinner and Christmas shopping.
And Reese and Greer?  They
went with the Bodily's to a nursing home where the girls
played the elves to the Bodily's Mr. and Mrs. Claus.
The girls sang Christmas Carols and passed out--
get this, 180 candy canes.

Tuesday, December 16, 2014

Cupid Strikes

It was bound to happen...
you know, Kean being Mister Handsome and all.
He met the one.
A sweet little lass named Lucy.
And we have to admit, she couldn't be any cuter.
 I can't say we saw fireworks but we did
see something we've never seen before--
Kean smitten and wanting to hug on or kiss on
Miss Lucy just about every time he saw her at
Camp Rainbow Gold's Winter Retreat.
 I'll shut my yap and just let the pictures tell the story.

And yes,, we exchanged numbers so we can get the families together.
Added bonus, Lucy has a big brother (actually her uncle who lives with them)
who has Down's syndrome and who just finished his Chemotherapy.
Lot's to smile about.

BarkerBerry Jam

If you have read this post with any regularity, you'll remember
the early mornings the girls spent all summer picking
Blackberries.
 We saved some and the girls dug into their piggy banks 
to buy some Huckleberries from Montana
and guess what we made?
Jars of Barkerberry Jam.
 Trust me, it is luscious.
The girls are selling some of the jars--
$12.50 a jar (12 ounces of pure heaven) plus shipping if you are out of town.
As always, the money they raise goes to take Kean
to Disneyland when he is done with Chemo.

Monday, December 15, 2014

Shining

This is one of those times when mere words will never be
able to capture what took place over the past four days.
Camp Rainbow Gold took about ten families with children
fighting cancer up to the mountains just outside Sun Valley.
There were so many wonderful moments--
moments never captured on camera.
But here are a few highlights...
starting with the big circle we all formed to say thanks before every meal.
 One of our favorite things about Winter Retreat is the passing of the microphone around
after every meal (and the donning of a silly hat) to "Shine".
Shines can be shining for the yummy food, for  a brave sibling,
for the people who took us snow shoeing or paint balling etc.
My sweet girls shined after every breakfast, lunch and dinner.
We sure had a lot to be grateful for.
 Our days were filled to the brim-- with dances, scavenger hunts,
games, snow play, snow shoeing and  paint ball shooting in the snow (as mentioned),
a kids night (full on carnival) and a parents night where we all opened
up, shared our stories, our fears, our anger and ourselves.
We laughed a lot (and cried quite a bit too).
The children loved every minute--
made the coolest crafts,
from these ice ornaments...
 to jewelry, trinkets and gifts.
 Each family was also asked to decorate a Gingerbread
house for the big camp competition.
We kind of cheated a bit and joined forces with our
good friends, the Moretti's.  We went with them to camp 
last year.  They lost their son, Anthony a few months back
so we were so glad they made it back to camp.
The Moretti's won first place last year and we came in second.
 And not only did we have fun working together
but we kinda went overboard.
 We created a Camp Rainbow Gold Lodge-- complete with
Santa on the roof...
 and a roof that comes off - to peek inside to see a Christmas tree,
a fireplace in the corner (with an LED light behind it)
and a cat carved out of chocolate-- thanks to Byron's
mad talents.
Of course, Kean wasn't much help with the decorating
and couldn't go snow shoeing or paint balling.
So dear Larissa-- our very own camp counselor
and a cancer survivor herself,
loved on him and he loved on her.
He had a fabulous time-- and if he could talk, I know he'd say how
happy he was to break out of house arrest.
Our last night, we had a giant Christmas Carol sing-a-long
and talent show.
It is camp tradition to sing the "Badger" song-- please
request it, if you come to visit our home.  The girls,
I'm certain, will be more than willing to teach you
this catchy little song.
 My brave girls got up and sang a few songs on their own
(they don't get that from me).
 And Holland and Greer somehow talked some of the
camp leaders into letting them do "blind makeovers"
in front of everyone.
The big man himself even came to visit and take pictures
with each family.
  And then the evening always culminates in the "Wish Cone"
ceremony.  Everyone writes special notes, ties them to
pine cones and then throws them in the camp fire to send
the messages up to heaven.
It is a beautiful, somber and moving experience.
Especially, since two of the families at the camp
had lost their sons to cancer.
 We feel very blessed to be able to be a part of
CRG's Winter Retreat.
Almost makes going through this cancer journey
worth it.
Okay, not quite, but it sure makes it easier and 
it sure makes you feel loved.
Very loved.

Sunday, December 14, 2014

Turning On the Lights

I went "dark" for a few days.
The entire family was up  in Sun Valley at Camp
Rainbow Gold's Winter Retreat.
There were about ten of us families with cancer kids there--
and we were spoiled rotten.
We are so glad to be home safe and about to sleep in our own beds--
but will do so with many, many happy memories of a
fabulous four days with some of the greatest people on earth.

Fun pics and lots of details are a coming.
But not tonight.
Too, too tired.