Saturday, March 30, 2013
All is right with the world again (well almost).
Byron and the girls got home this evening
and it sure sounds like they had a wild and wonderful camporama.
Kean has missed his sisters.
He had a really rough night--- just moaned and whined throughout.
His fever was back this morning but stayed
below the "dreaded trip to the hospital"'101 degrees.
Grammy finally got him to eat a bit and give her this half smile.
I just think he feels first class lousy from the Chemo. His fever did
break this evening and I took him for a bike ride. He actually giggled.
Boy, does that boy love the great outdoors.
The girls too... from the looks of it.
Byron and the girls hooked up with some friends of ours and had fun hiking around
the City of Rocks. (Don't you think Greer looks a bit like John Lennon?).
Anyway, you know it was a good time when they all come home
exhausted, dirty and sporting a mountain of laundry.
Byron said the weather was beautiful-- but still a bit cold at night.
Love this picture of the girls cooling off after a hot, sweaty hike.
Off to bed now. The rule in our house is the Easter Bunny won't make a visit
until everyone is asleep.
Friday, March 29, 2013
Kean and I celebrated tonight with a walk and a yummy dinner Elly Moomey brought over.
Byron and the girls are still on their camp-o-rama.
We had Chemo today...
a Chemo treatment that's quite significant in our world.
Kim Leach was our fun date at the hospital.
Today marks the final day of all the hard core Chemo phases.
We get two whole weeks off before starting the Maintenance phase..
the phase we've been pacing ourselves and praying that Kean would be
strong enough to make it to.
He will continue to get Chemo until September 13, 2015... but some of
the more wicked Chemotherapy drugs (the ones that make his hair fall out
and send him to the hospital etc.), are behind us.
Dr. Camilo told us that a lot of parents fall into a depression
when they finally get to where we are.
My dear cousin who went through this same trial with her daughter
put it like this.. she said so many months are spent in survival mode,
just trying to operate under such extreme stress that when you finally
get to this goal of Maintenance-- you collapse from the sheer exhaustion
of the intense pressure of trying to keep your child alive, minimize his pain and
hold the rest of your family together.
I have so much support and I've had that support all along this journey,
that I think I'm in a pretty good place to handle this transition.
We still have a long, icky haul but I firmly believe the worst
is behind us.
By the way, Dr. Camilo told us today that Kean has done "much better
than he ever expected". Dr. Camilo is a man of few words...
so coming from him, that was huge.
We have so much to be thankful for, don't we!
Thursday, March 28, 2013
I'm happy to report we had an uneventful night... once we made it home from the E.R.
Kean slept through the night and slept and slept.
He's usually better than having a rooster.
He wakes up with the sun.
But not this morning. He overslept a good 2 to 2 1/2 hours.
I'm guessing his body needed it.
He was pretty low energy and not interested in eating...
but did manage a few smiles and signed that he wanted to go on a motorcycle ride.
So we knew all was well.
Byron took the three girls camping.
Geez, the house is scary quiet.
Kean took a whopping 4 1/2 hour nap.
I kind of didn't know what to do with myself. I kept checking on him to make sure
he was still alive and breathing.
When he finally woke up, cha ching... he ate some dinner
and we went on an evening stroll (until it started raining on us)!
We are rescheduled for Chemo tomorrow.
His fever disappeared around lunchtime, so I'll be surprised if
they don't give him the treatment.
Sweet dreams everyone!
Wednesday, March 27, 2013
Geez and today started out with such promise.
The weather was wonderful-- so much of therapy was out on the trampoline, playing
Ring Around the Rosies.
Fuzzball cooperated somewhat but overall, was just thrilled to be in the great outdoors.
Notice how happy and healthy he looks!
But come lunchtime, he wouldn't eat and was very low energy and a bit whiny
for therapy with Maureen.
He woke up from his nap with very flushed cheeks and he went over
that dreaded temperature thresh hold of 101.
So we were told to head downtown to the main hospital since his counts had been so low
at his last chemo appointment.
Our little four hour excursion wasn't so bad.
They brought in a new toy-- this giant bubble machine.
I tell ya, it was amazing. It played soft music,
changed colors, projected cool pictures onto the walls, had these strings you could play with
that sparkled and changed colors and
had a bumpy toy ball you could squeeze to send really big bubbles
up the tube.
Kean LOVED it! Understatement..
He was mesmerized for a couple of hours (when he wasn't crashed out sleeping).
It was worth every bit of the four grand the hospital paid for it!
So here's the scoop. The doc told us to pack a bag.
If his counts were low, we'd be staying at the Hotel St. Luke's.
But get this, his counts -- I think they said-- were 8 thousand.
Meaning, his body did what it is supposed to do and kicked in to
fight whatever is going on.
They gave him a wide spectrum, long lasting antibiotic, IV fluids,
Tylenol and whoopee, let us come home.
Here he is dressed in his street clothes ready for his big break.
Tomorrow's Chemo has been cancelled so they can see if
anything grows on his cultures.
We hopefully will be back on schedule for Friday.
I guess things were going along so well, it was time for a
reminder, that oh yeah, Kean still has Cancer.
Tuesday, March 26, 2013
We woke up to rain this morning.
Guess the weather guessers missed that one.
That meant the kids had to come up with some "inside" activities.
Reese showed up with full make-up on, hunched over
and asking in a creepy voice "A delicious apple, my pretty?".
Guess she's seen Snow White one too many times.
We were so excited this afternoon when our day turned picture perfect
and Reese found the first blooms in our yard!!!!
Guess by now you know what that means.
Motorcycle ride time with pops!
Good or bad... you'll have to call it.
Nearly every time Kean sees his daddy now, he makes the sign
for going for a motorcycle or tractor ride.
For now, it seems that's all he associates his dad with.
We just laugh.
Monday, March 25, 2013
Today marked the first day of Spring Break.
The kids and I walked up the hill to meet the neighbor for the first time.
The sad part is, we've lived on the same street for over a decade,
we have several mutual friends...
and today was our first meeting.
(Even though she met my mom two weeks ago).
They were delightful and have a daughter a year older than Holland.
They took off and hit it off.
Reese and Greer had a grand time decorating giant Easter bunny cookies.
I couldn't quite tell where the most candy went-- in their mouths
or on their cookies.
As for Kean, I think he was in heaven being out of his house
and having a change of scenery.
I took a few snaps tonight of our happy boy
whose hair is growing like weeds.
Check out those locks... we are almost, almost getting to a point where we might
need to dust off the ol' comb. Not quite but almost.
For now he's still our little Fuzzball.
Sunday, March 24, 2013
Today we celebrated my dad's 80th birthday.
Yes, you read that right. 80.
Crazy that we are all getting that old.
My niece Katie made her magic with a pretty cool cupcake display.
My dad's the type that would prefer to have his birthday's forgotten
But of course, the rest of us are the types that can't let an excuse to have a party pass us by.
But we did keep it pretty quiet-- just family and my neighbors, the Bodily's.
We got him one, yep, just one present.
A book -- one of those online scrapbooks-- that we filled with pictures
and letters from all of us, his wife, kids, grandchildren, siblings and in-laws.
It took us quite a while, but each of us read our letters out loud (my dad is legally blind).
We all wrote about our favorite memories or favorite things about Grandpa.
Some of it was funny, some of it was touching.
Kean, was in his own world tonight-- oblivious to all of this
looking back and remembering.
But boy, was this boy in a good mood (and easily entertained).
For a dad who didn't want us to do anything for his birthday,
I think he was quite touched.
Saturday, March 23, 2013
So here's the thing.
In case we've somehow allowed you to get the wrong idea, my girls are not angels.
Last week the two eldest started arguing at my parents house.
When Grammy told them to stop fighting and hand over the i-pod, they
ignored her and made a run for it.
Welllll, we couldn't let that pass now could we?
So today the two hoodlums spent their afternoon scrubbing down
Grammy's baseboards to make up for their being disrespectful.
We figure by the time they make it through their teenage years--
my mom and I should have the cleanest houses in the state!
It was still obnoxiously cold here.
We're all tired of it and ready for spring-
but the chilly air didn't stop Byron from caving
into the boy's demands.
He doesn't look very happy but trust me he is.
I'll tell you what makes me smile...
how Byron always calls our boy Evel every time he takes him out for his rides.
Friday, March 22, 2013
It turned wicked cold again.
So much for the tease of Spring weather last week.
And that means, poor Keanut is stuck inside
doing rounds on his trike.
All this week, the girls have had dress up days.
On this day, it was time travel day.
Greer dressed up with her best friend as twins in poodle skirts.
Reese went as an Egyptian princess...
And Holland went to school in her pajamas ... telling everyone
she was traveling back to bed! Pretty clever, I say.
Today also marked the beginning of Spring Break.
The girls have all last week off and were plotting and planning a camping
trip with their dad for the end of next week.
Reese got out her princess tent for Kean.
This is the closest he'll be able to get to camping for quite some time.
But thankfully, he doesn't realize what he's missing out on yet.
His time will come.
Thursday, March 21, 2013
We hate goodbyes... so it was see you later to Kean's speech therapist, Leni today.
She has only been with us for a couple of months and Kean adores her but alas, she
is moving to another company.
Sure hate goodbyes.
We left Fuzzball at home with Grammy this evening and headed out
to the Treasure Valley Down syndrome dinner in honor of National Down syndrome day.
A little lesson for you-- did you know that Down syndrome's official diagnosis is
Trisomy 21 and today being 3-21-2013-- it's Down syndrome day.
Our little peanut was one of tonight's honorees.
He was spotlighted for his courage-- they read an essay about his bravery, gave him an award
and had me say a few words-- yikes.
At least I got through it without losing it. I tend to be an emotional basket case these days.
On top of the dinner and awards, they had a group of darling cheerleaders put on a show.
They had each family make a poster (ours was for Keanut) and hold it high
for the celebratory parade.
And then they let the kids cut loose with a dance.
It was great fun... and we can't wait to participate on some future March 21st
with our boy.
Wednesday, March 20, 2013
We have a friend who is going through the same treatment as Kean
and she says she feels beyond lousy for about the first week after Chemo.
Yoga Boy amazes.
While he may feel crummy, he still puts in a decent effort for therapy.
Today he climbed the stairs (just look at that form).
He showed off his escape attempts...
and he played games and popped bubbles for Momma Gump.
For all his efforts, he got a fun surprise in the mail
from two of my bestest girlfriends in Arizona (Stacy and Sherri)...
a set of "cars"...
to go with his favorite Chemo movie; Cars.
As always, thanks for the love!