Saturday, May 30, 2015
Reese is our shyest.
While Holland and Greer seem to have no issues with getting up
in front of anyone who will listen and singing-- this one
surprised us and decided to try out for the school's talent show.
She said she had to keep the tradition alive (both her sisters have sung).
Well she made it-- and little Miss Brave
got up and sang in front of her school and a bunch of parents.
She told me she was scared to death, shaking like a leaf
and not sure she ever wants to do it again!
But she did it and I'm so proud of her.
Then last night, after the big performance, we celebrated
That's a platter of donuts-- no birthday cake for this girl.
I think she had fun with her darling friends.
Kean was off all day, woke up from his nap sobbing
and then added to the festive atmosphere by throwing
up while everyone ate pizza.
On the bright side, he hasn't been eating much of anything,
so pretty much only threw up pedialyte.
Also, to keep things interesting (and keep Mama stressed)
he had a fever that was running just under 101 (he was 100.9).
We earn a trip to the E.R. at 101.
Alas, he seemed to feel better after throwing up-- and only
wanted to be around the ladies.
His fever came down a bit (finally broke at 10:45 p.m.)
and he was much happier.
Go figure what that was all about.
He woke up-- acting fine. No fever this morning.
But he still won't eat hardly anything.
I've luckily gotten him to down some Pediasure
mixed with cornstarch to keep his blood sugar levels
from plummeting with the Chemo.
I'm actually looking forward to taking him in on
Tuesday for his big Chemo appointment so the
doctor can check him out and see what is going on!
Thursday, May 28, 2015
Today was one of those jammed packed days.
Kean had Physical Therapy with Andrea this morning
and she tried to work him while I did a radio interview
on Baldapalooza over the phone.
He wasn't too cooperative.
Which was kinda scary in that we had the Special Ed
teacher and the Speech Therapist from the school he will
attend next fall coming to the house to observe him.
Get this though, he was on fire for Maureen--
a total show off for the ladies.
This afternoon, we dropped Kean off with my parents,
picked the girls up early from school and headed to the airport
to see Mark Moomey come home from serving a church mission
to Holland. He's been gone for two years.
Mark and Tim (in the middle) both worked for Byron
for a few years leading up to their missions.
So it was good to see "Slave Boy #1" and "Slave Boy #2"
reunited with their master!
The girls and I had made posters to help welcome him home.
It was such fun to see him after all this time.
Then it was "make sure the pool works" time at Grandpa
He's been getting it cleaned up and warmed up
for Greer's birthday party tomorrow night.
Kean was a wild man.
I have a feeling we'll be living in this pool for much of the summer.
Wednesday, May 27, 2015
I'm still pinching myself that Greer is actually 12!
Guess it is true in that about a dozen of the girls from
our church came over to decorate her room as a birthday surprise.
I love this very sweet tradition and clearly, so does our girl.
She's having friends over Friday night-- but
opened a few cards and gifts tonight.
Don't ask me why... but she's wanted a pair
of suspenders for about forever. I'm afraid we'll
be seeing these on her every day from here on out.
Of course, we had to have her favorite dinner
and a little cake.
Speaking of cake, you'd think Boy Wonder
would be all over that.
Nope, he continued his aversion to food from yesterday--
hardly eating anything today.
My friend Calene came over this evening (well after dinner)
to bring Greer a gift.
And somehow we got Kean to eat some chicken and cake--
while he was swinging!!
Hey, whatever it takes, right?
Tuesday, May 26, 2015
We had a lovely surprise visitor at the house this morning
when we got home from horse therapy.
Maddie Clark was there bearing a big bottle of orange juice
for the Keanut man.
He has been hooked on OJ lately and can't seem to get enough of it.
I tell ya, this boy is stressing me out.
I got a call from his Endocrinologist's office today
telling me he's too low on his "fructosomine"-- some
sugar level and now needs to eat a small meal
every three hours.
Um, maybe the doc can do better at getting this boy to eat and drink.
I swear, he got an extra chromosome of stubbornness.
He will only eat and drink if he wants to.
Take tonight, for example, I tried about everything in the house
and couldn't get him to eat more than a few bites of food and
a few bites of a smoothie (spiked with tons of raw corn starch that takes
10 hours to break down in his body so he won't have a hypoglycemic
seizure). And just when I thought perhaps, maybe, I got enough
down him-- he threw it all up.
We will see how he does in the morning.
(I did get him to drink some chocolate milk with corn starch).
As for much better news,
Holland spent the evening downtown at one of the parks
helping our photographer friend, Fabiana
as she did a handful of photo sessions with some
of our cancer heroes.
Fabiana is shooting 20 cancer kids this week
as we get everything done and ready for our
Hall of Heroes at St. Luke's on the Pediatric Cancer floor.
She showed me some of her shots in her camera this evening
and they are beautiful!!!
Monday, May 25, 2015
You know what I loved about today?
The fact that it was packed at the cemetery.
Everywhere we walked there were flags and fresh flowers.
We specifically went to clean off the gravestone and take
flowers to my nephew's grave.
He only lived a day and his parents now live in Texas,
so we have the yearly tradition of taking the kids
to visit Isaac's grave (and my cousin's children's graves).
My parents and my brother and his family met us there.
Kean was marginally into repeating the colors of the flowers
and really into eating jelly beans (especially blue ones)
he pawned off of Grandpa.
Happy Memorial Day everyone.
Thursday, May 21, 2015
So I think I just might start taking applications or at least keeping
a list of who wants to marry this girl.
She plays the violin, draws, is an epic babysitter, a hard worker,
darling, sweet and has one of the kindest souls ever.
Oh, and did I mention she sings?
Non stop. We have to ask her to stop singing to eat dinner or say a prayer.
Well tonight, she got to sing her guts out.
Her orchestra teacher for the first time decided during their
final concert to have the 6th graders play a pop tune.
Of course, Greer knew every word so she asked her if she'd like to
sing a solo-- accompanied by the orchestra.
Another boy in the group insisted she wasn't the only one
who could sing-- so he got to join her.
Here's a little taste.
And did I mention she has the sweetest soul?
She came home and took her little brother
for a ride on the "Greer Express".
Wednesday, May 20, 2015
Too bad the TV show The Voice is over.
Kean has about perfected his number--
sure to be a dazzler if you can get over my voice cracking.
This is what we do while we wait for the bus.
Tuesday, May 19, 2015
Geez, it's always something.
Because I don't have enough to worry about,
the doctor suspects Kean may have Jaundice.
Both Byron and I have noticed separately
over the past week and a half that Kean's hands
have looked quite yellow (on and off).
Today, at his horse therapy lesson, Candice
even picked up on it.
(Sorry, this pic doesn't do it justice)
The good news is we don't have to take him him,
we just have to watch him
closely and try to keep him extra hydrated etc.
Good luck with that- he is one stubborn chicken and
will only drink when he wants to drink!
Sunday, May 17, 2015
That Greer girl!
We have a tradition in our family-- my girls can get their
ears pierced when they turn 12.
(That was the rule for me, thus the rule for them).
Greer won't be 12 until the 27th of this month
but she has not let me forget that Holland got her ears
pierced two weeks before her birthday-- so guess where
we went yesterday.
Greer totally had us laughing.
The store had two women on "the guns" so she was able to get
both done at the same time.
Get this, she didn't even flinch, blink or react-- at all.
In fact, she just sat there waiting and waiting.
We had to tell her it was d.o.n.e.
To make an exciting day even more exciting, we met
up with her good friend from school, Lorien (who also just turned 12),
to get their ears pierced together.
Friday, May 15, 2015
Today was a big day for Kean- even though he didn't realize it.
This afternoon I met with a huge group of educators about
Kean starting school in the fall.
Let's see, it was the principal, the school district's head of Special Ed,
the school nurse, the school psychiatrist, the speech therapist, the occupational
therapist, the physical therapist, the kindergarten teacher, the extended resource
room teacher and me.
I totally lucked out and Colin- the teacher that handles all the education
at the hospital for the cancer kids drove out to sit next to me,
address Kean's health issues and coach me through the meeting.
In short, it couldn't have gone better. They are flexible about
him trying to start school at the end of August or waiting another month
until he's done with Chemo. It will all depend on his health and counts.
And here's what was so beautiful about the meeting- at least for me-
there were about 10 items they needed from us.
For example, all of his therapy reports, a letter from his Oncologist explaining
why he is so far behind on his immunizations etc.
When we left, I had two things on my list--
Colin from the hospital had 8-- 8 things he will
totally take care of!
How did I get so lucky?
Okay, I'll be adding a thank you note to my list
but that's nothing.
One more thing, Kean's runner, Clair will be running a grueling race
on behalf of our little guy in Kentucky tomorrow.
My hope is someday he will understand how so many people
have done so many kind things for him.
Tuesday, May 12, 2015
Back to the old anchor desk today.
Our local NBC affiliate had me on air this afternoon
to talk about Baldapalooza.
The anchors, Carolyn and Dee, couldn't have been more gracious.
And it was great to get the word out
on Baldapalooza and...
our headliner, Andy Grammer.
His current hit, "Honey I'm Good" is #17 on the Top 100 Songs in the country
He's on fire and we sure are excited.
Here's his song if you want to hear it!https://www.youtube.com/watch?v=Go7gn6dugu0
Get your tickets now:
Sunday, May 10, 2015
We didn't just have a Happy Mother's Day...
we had a Happy Mother's Day Weekend.
We went up to the cabin with my parents
and can I just tell you how much I enjoyed being with my mom this weekend
(and the rest of the crew).
What did we do, you ask?
Mostly eat too much and relax.
On Saturday, we did go on a great adventure.
We went and explored Warm Lake (beautiful)...
and went on a tricky little hike (my dad is legally blind)
down into some natural hot springs.
Kean felt good all weekend and loved, loved, loved
exploring and being out and about.
I won't rub it in about how wonderful
and relaxing those hot springs felt.
We all looked like prunes when we were done.
But oh, was it worth it.
Happy Mother's Day to all of you.
Thursday, May 7, 2015
The bad news is Kean had a pretty rough day.
You could tell he was hurtin' and just wanted to be held.
The good news is he had moments of relief tonight
where he seemed happy and comfortable.
We are getting there, yep, we are.
Kean got a special little "pick me up" today--
this brand new C.D. was given to us.
The Runaway Hamsters are a group of siblings- triplets plus one.
They started a band to help raise money for a friend at school
who was fighting cancer and from there they skyrocketed.
This is their new c.d.-- produced by Dolly Parton's
music director and trust me, if you have children, it is a blast.
I put it on tonight and Kean perked right up, clapping his hands
With their "give back to the cancer community" history, we thought
they'd be such a fun opener at Baldapalooza this year. So if you
are coming, you'll get to hear them play a couple of songs.
Wednesday, May 6, 2015
We lucked out today and Kean felt good for much of the day.
He actually even ate decent (until dinner).
He was doing well enough, we went to horse therapy with Romeo
and had a great time.
He giggled and smiled all the way through the session.
Unfortunately, that blasted Chemo had to hit eventually.
And it hit right about the time he woke up from his nap.
Oh, it is hard to watch your child so miserable.
Daddy took him for a brisk ride on the motorcycle.
It is cool and breezy here-- but I don't think that made one iota of difference to the boy.
It bought me a break and him some relief.
If you haven't heard, we announced our big shot headliner
for Baldapalooza: Andy Grammer.
If you can't place him, trust me, you know his music.
He will be fabulous.
He's performing on August 29th-- just two weeks before Kean
finishes up his Chemo. Bet you can't think of a better reason
to come to Idaho to help us celebrate.
Tickets and info at www.baldapalooza.org.
Tuesday, May 5, 2015
Another Chemo day up.
And another Chemo day down.
This boy, Kean, I tell you is a trooper.
We had an extra amount of waiting (they were having computer problems)
Lucky for us, we had the perfect "Chemo Date" today, Kris Pattee
who helped wrangle the boy.
We also had the music therapist singing Sound of Music tunes.
Kean's port is frequently "persnickety" and today was no
exception. We had a rough time getting blood out of him
but thankfully the nurse finally got the red stuff to flow- enough.
Surprisingly, his counts are good -for him
and right where they want them to be.
We met with his doc, Dr. Camilo and talked
once again about the end and what that will look like.
Get this, once he finishes his Chemo, that's it.
Dr. Camilo told me they won't do a big bone marrow draw
to see if there's any cancer lurking in his body.
That shocked me.
But Dr. Camilo said research has found that it is not worth it
to put the kids through that pain and trauma. Oftentimes, really
small amounts of cancer hiding out won't show up in those tests.
And if a child still has cancer, it will manifest itself in other ways
(wacky blood counts, rash, fever etc).
Kinda crazy-- we'll just finish and hope it's the end.
Meanwhile, back to today.
When they went to give him his Chemo today, the nurse
noticed a problem.
His port was no longer accessed. His port is what we use
to get blood and to give Chemo.
If you look carefully in this picture, you can see
how big the catheter needle is. It was completely
out of his chest and bent down. Even though
his chest was bloody, thank goodness it was bent down
so it wasn't poking him!!
Poor little guy had to be accessed again.
He may look patient here...
but truth be told, he wasn't happy about it -- at all.
Thankfully, we got it in and got back to business.
He's been doing great overall tonight.
It really hasn't hit yet.
It probably doesn't hurt things that Byron took
him for a long motorcycle ride.
I took these cute girls to a Mother/Daughter church
dinner and party.
But we are getting there.
The light is growing very bright at the end of this tunnel.