Wednesday, July 31, 2013
The boy woke up this morning and went to bed tonight-- g.r.o.u.c.h.y.
Can't say I blame him.
If I had that much Chemo pushed into my body I'd be a terror.
Kean was supposed to have two therapy sessions today.
Poor Andrea... Kean was most uncooperative today.
We opted to postpone Maureen's session until next week.
The only thing that made him happy tonight
was yep, you guessed it... a motorcycle ride with
Pops-- (and a hello from Grandpa Bodily).
Tuesday, July 30, 2013
Life is so much easier now than it was just a short while ago.
We used to head to the hospital every week for Chemo through Kean's port.
Now it is just once a month.
And that is a beautiful thing.
He's still on oral Chemos at home every night and every Wednesday
but wow, has our life settled down compared to how it was.
Today's Chemo date? Well, we kind of had a double date.
Amber Allen (on the left) was our date and once at the hospital,
we hooked up with Zoe Bullard who works for the St. Luke's Foundation--
she's the one helping us pull the Baldapalooza Music Festival together
since it's benefiting St. Luke's.
As you can tell, we are starting to get posters out everywhere-- pretty exciting.
Kean was a rock star at Chemo today... flirting with his "ladies"...
really, the nurses there are so fun.
They always sing and dance for him while he's getting his blood draws and vitals.
And Chemo really wasn't too bad... only one drug today intravenously-- Vincristine.
This one makes him a bit nauseous and can cause jaw pain and tingling in the feet.
So tomorrow with his two therapists coming should be interesting-- as always.
Notice he's watching Cars again?
We did run upstairs to see my cousin Ginger who is on hospital
bedrest. She is 30 weeks pregnant and has lost all of her amniotic fluid.
She's already been there 2 weeks and they want her to try and last another 4
and get this--- she is in my old room!!!!!!!!
Crazy memories going to visit her and seeing her in the bed where I spent
As I told her, it's all mental. If she can keep her head in the game, she'll
get through this. I feel for her though, she has three little boys at home.
Her oldest is Reese's age.
For me, that was probably the hardest... being gone from the girls
and hoping this forced staycation wouldn't impact them too much.
But let me let you in on a little Barker secret-- we don't save for
our children's college funds-- instead we just save for their therapy.
After all we've been through, I'm certain we need to add a considerable amount
to that fund.
Posted by Lonni Leavitt-Barker at 10:44 PM
Monday, July 29, 2013
Keanut is finally feeling better... just in time to go to the hospital
tomorrow and get zapped with Chemo.
I swear, it never ends.
Tonight at dinner, Reese graced us with her "rock star" presence.
Byron has started calling her "Soul Surfer"... 'cause we caught her
not too long ago pretending to surf with her arm stuffed in her shirt--
just like it had been bitten off by a shark.
That girl and her crazy imagination!
Holland took Kean for a little pre-bedtime swim.
The two of them should sleep well tonight.
Good thing, we have a big day tomorrow.
Sunday, July 28, 2013
Thank goodness for Sundays.
We needed a day of rest.
Greer surprised everyone with a homemade birthday cake
for Reesey since she spent her birthday away at Camp Rainbow Gold.
Greer, by the way, told everyone she called her concoction "cake in a pan".
We also celebrated Kean's soon to be birthday-- a candle for him
and a candle for Reese.
With the left over frosting, the girls had a grand time giving
the two of us "lipstick".
One of our favorite sayings around these parts is
Give Me A Keeeees.
Give Me A Keeeees.
Saturday, July 27, 2013
Mister Crankypants still doesn't feel great. But he's a whole lot better than
he was the other night. So for that, I'm thankful.
Greer took this picture today on her ipod and gushed about it being the cutest ever.
Personally, I think with his blotchy red face, it makes Kean look like he's been
nipping at the liquor! He goes back on Steroids on Tuesday
so all this teenage acne stuff should once again start clearing up.
I guess here's my proof if one searches hard enough, one can find a silver lining to almost anything.
I hate, hate, hate those blasted Steroids but they do work wonders on his face.
We got up with the sun this morning to pick blackberries before
it got too hot. Reese... bless her sweet soul, bundled up in her
winter ski jacket. Wish I would've gotten a picture of that spectacle.
It did get into the 90's today.
We picked 10 1/2 gallons this morning.
I'm a bit worried. This is only our second real picking
with many more to come.
Please let me know if you want some of the girls' Barker Berries.
Otherwise, I'm gonna have to get pretty creative about
what to do with all these berries.
Friday, July 26, 2013
At least in this case.
I just knew we were headed to the Emergency Room...
and unfortunately, we did end up there.
Of course, it's always in the middle of the night.
Darn runny nose seems to always turn into Croup--
where his airways are so restricted he can't breathe.
We've been through it so many times this past year,
I don't even get stressed anymore (well, just a little).
By the time we got to the E.R.-- I think the cooler night
air and sitting up right in his car seat on the ride clear downtown,
helped his breathing.
They gave him a shot of Decadron and it is amazing
how quickly that stuff works.
In fact, we were only gone a few hours-- a record for a trip to the E.R.
Still, by the time we got home, Kean tucked in bed and
me in bed-- Byron's alarm went off about five minutes later.
Sleep is highly over-rated.
I'm trying to convince myself of that anyway.
A special thanks to Heather Davis
for taking my girls today
so Kean and I could both get
a good nap in.
I'm feeling human again
and he sure seems a lot better than he was.
Thursday, July 25, 2013
All I can say is thank goodness we had a day away from the craziness yesterday
'cause we are back in it today.
I can tell Keanut feels awful. He has a runny nose, a low grade fever
and has been all around grumpy most of the day.
He had horse therapy today but we ended up cutting it quite short.
Poor kid wasn't feeling the love today (for his horse Reba).
He seemed a bit better at bed time tonight-- probably because
I took him on a long walk and then Byron took him on... yep,
a motorcycle ride.
Whatever it takes, whatever it takes!
Holland comes home from Girl's Camp tomorrow.
We have missed her.
I came across these sweet pictures where she is reading a bedtime story to Kean...
and then he looks to be reading to her!
Wednesday, July 24, 2013
We had the great escape today.
My folks kept the Keanut man, Holland headed off to girls camp for our church
and Byron, Greer, Reese and I motored on up to the mountains.
There were 32 of us in all, Cancer families, that got to go white water rafting
on the North Fork of the Payette.
Here are the girls getting ready to board the bus.
We rode about an hour up before parking and putting in on the river.
Lucky for us, we were paired with Kean's little buddy- Audrey's family.
If you remember, she is the same age as Kean, has the same type of Cancer
and also has Down syndrome. Of course, both Audrey and Kean had to stay at home.
But we really like this family and
have an awful lot in common-- not just the cancer stuff.
The picture above has Greer sitting in what's called the "bull" position...
at the front of the boat. Even Reese took a turn there-- taking
a beating from the waves.
The highest rapids we took on were a class 3.. in fact, Audrey's
13 year-old sister, Kendra was thrown from the boat on the second
to last run of rapids. The look on her face was priceless but
she did everything she was supposed to do that they had taught
us before we even launched.
The day was perfect-- overcast, not too hot and the water wasn't
too cold. We all got in and out and soaked by rapids and by
water fights with the other boats.
We stopped half way down, pulled off onto a beach and
had a gourmet lunch prepared by all the river guides. It was
such a great day in so many ways-- mainly to escape all
the craziness in our lives and just get out on the water and have fun.
The other families were looking for and I'm sure ready for the same break.
It was just what we all needed.
Tuesday, July 23, 2013
Oh this boy is going to drive me to an early death.
He's still not eating much of anything.
Thank heavens he's still drinking his uber high calorie vitamin boosted milk with Pediasure.
I'm just running out of food options.
He will hardly eat even his old favorites.
Don't know if these pictures tell the story but his face is
broken out-- again. Horribly.
He looks like a pimply teen.
And now I can't tell if he has a pimple on the lower lid of his
right eye or if he's getting an eye infection.
Let's hope it is nothing.
We are scheduled as a family to go on a white water rafting
trip tomorrow (my mom will stay with Kean).
A company is taking a bunch of us Cancer families
down the river for the day. We've been planning it for
quite some time. Here's hoping Boy Wonder
continues to live up to his moniker.
Monday, July 22, 2013
More proof we are living in Girl World.
Check out how I found Ken in the Barbie playhouse.
Don't get me started on his hair.
Kean is still edgy and has become a real food snob.
I'm doing what I swore I wouldn't do (and never did with the girls)---
become a short order cook.
I try several items per meal it seems.
And like tonight, nothing pleases Mister Picky.
Nothing. but watching... yup, you guessed it: Cars.
At least we are making progress in the vocabulary department.
Sunday, July 21, 2013
Remember my friend Colleen who watched Kean the other day
while I went to pick up the girls from camp?
Look at what she put together and sent us.
It gives you a glimpse of how bendy he is (and how loved).
Today has been blessedly quiet.
Except for this snappy musical number.
Little did you know Byron had such moves.....
Saturday, July 20, 2013
All is back to our normal now that the girls (and Byron, who was out of town yesterday)
In fact, the girls couldn't get enough of their dad this morning...
I'll not name names but one of them was so excited in this picture, she
drooled all over her dad.
Gross but funny.
We picked about two gallons of blackberries this morning.
Yes, the girls will be selling them again this summer
to save money to take Kean to Disneyland when he is
done with his Chemo.
So get on the list if you are interested.
Kean had a big day today, even though he's made it quite vocally
clear that he's not been feeling too good these past few days.
Desh, his Orthopedist made a house call yesterday to fit
him with his new foot braces.
They have little cars on them!
These are his old "Keanut Gump" braces that
Desh took with her. She sends these old ones
to kids in Ecuador.
I told you he had a big day.... today we headed
down to Kaleidoscope, the therapy gym run by several
of Kean's therapists.
Andrea made special arrangements for him to go today by himself
and after the place had been deep cleaned.
Let's just say he was in hog heaven.
In fact, Andrea figures she got more work out of him
today than she's gotten in the last six home visits combined.
So after all the hard work on the ladder, he gets to go down
this bumpy slide-- and loves it!
It was a real treat for him
and a real workout.
He fell asleep on the way home.
Posted by Lonni Leavitt-Barker at 9:54 PM
Friday, July 19, 2013
Guess who came back to us today... our three girls.
We picked them up across town, along with their larger
than before bags stuffed to the brim with dirty clothes, towels, shoes etc.
We went out to dinner to celebrate Reese's birthday... and the girls finally
had to take turns telling me about all their adventures.
It was pretty entertaining to see them so excited to tell about cabin raids,
dancing, gymnastics, ice skating, art time, archery and on and on.
They all want to go back so that's a good sign.
My dear friend Colleen Riggs kept the Keanut man for us...
and the girls just squealed when they saw him.
You can't help but wonder what he's thought of all the quiet
and now thinks of all the noise.
Thursday, July 18, 2013
Kinda strange to have today be Reesey's 7th birthday
and she's not even here to celebrate.
I sure hope she had a special day up at Camp Rainbow Gold.
We sent a few little presents and cards up with the girls
so hopefully she won't recreate the pose in this picture.
We sent this out as a Christmas card many years ago
and it still makes me giggle.
You know what Thursday means... another horse therapy lesson for Keanut.
Something quite interesting happened today though...
he was riding along happily when Reba the horse
did this giant shudder thing. It must've felt like an earthquake to the boy.
He started to slip but with me on one side and Kevin on another, he wasn't
Still, it freaked him out sufficiently.
He had to get off the horse and be hugged until he stopped crying.
But get this, he got right back on and was happy again.
We went over to my folks house this afternoon.
My dad is famous for sneaking the kids Jelly Bellies.
And of course, Kean is quite the convert to the practice.
I think because of these bribes... Kean has quickly learned
how to say "Grandpa".
Pretty cool stuff.
Here he is when it was time to say goodbye.
Yippee... the girls come home tomorrow!
Wednesday, July 17, 2013
Thank heavens for the Internet.
We got word.. well proof that at least two of our three girls are alive and well.
Camp Rainbow Gold posted a bunch of pictures on their face book page.
That's Reese second from the left -- with the rest of the kids from her cabin.
And yes, that gadfly is Greer.
She looks like she is totally in her element.
Today's agenda called for a hike, ice skating and a big dance tonight.
Kean's been partly grouchy for the day.
Please notice his hearing aid.
We're slowly making progress.
Today, especially during "speech time".
We're really working on the word "motorcycle"
(probably the most important word in the entire vocabulary-- according to him).
He got so caught up in playing with his motorcycle...
that he forgot to yank out his hearing aid for a while.
Like I said, progress.
We got a good laugh tonight.
After dinner, he was whining and acting like he was miserable
until Byron asked if he wanted to go for a motorcycle ride.
I tell ya, you've never seen such a miraculous healing!
Tuesday, July 16, 2013
We had our appointment this morning to look at the four pictures of Kean
the poor photographer got before our boy was d.o.n.e.
Surprisingly, all four of them were cute.
They even showed me the picture that will likely go in the Treasure
Valley Down syndrome calendar.
They photo shopped him in with two girls-- Kean and his ladies.
Amazing... it actually looks like he was there for the group photo shoot.
We had a scare this evening. Another lightning storm and
another grass fire about five miles from our house.
Of course, if you are a regular reader of this blog, you'll
remember that 3 years ago we had a similar fire in nearly
the same spot. It gobbled up 11 of our acres and took down the two
houses next to us.
As you can imagine, we are a bit fire shy around here.
But good news to report, the fire is 70 percent contained,
the winds are calm and we feel safe enough to head to bed.
So goodnight all.
Monday, July 15, 2013
Soooo loving the peace and quiet at our house.
But also really missing the girls and dying to know how they are doing.
It is so strange to be out of contact with them for this long. Yikes.
Keanut had speech therapy this morning.
It went okay. He's just not Mister Cooperative these days.
But he was Mister Personality today for Chelsea
who came and took him for a long walk along Boise's Greenbelt.
I guess he cried and cried (hard) on the way there
and when they first got there.
But Chelsea masterfully distracted him
and got him happy again
and of course, willing to mug for the camera.
Crazy boy. You'd think he'd be thrilled
to get out of the house any chance he gets.
Maybe that's the problem:
he doesn't get out often enough.
Sunday, July 14, 2013
You cannot believe how quiet it is in our house!
First thing this morning, we drove the three girls across town
to the American Cancer Society parking lot.
They are heading up to Sun Valley for Siblings camp--
(a camp for sibs of kids with Cancer).
It was kind of interesting. On top of some last minute paperwork,
we had to meet with some nurses to go over allergies etc., the girls then had to have their vitals checked,
their hair checked for lice and their feet checked for Athlete's Foot.
Thankfully, they all passed.
Then it was on to get their "mug" shots taken.
They were all a little nervous to leave home...
But even before the buses pulled into the parking lot,
the girls were already making friends.
Months and months ago, a couple of Kean's doctors told us that we needed to send the girls.
From what we understand, Camp Rainbow Gold is supposed
to be Nirvana for kids.
They are gone all week and it will be so strange not to have them
running the house at full volume.
It will be interesting to see how Keanut adjusts to the calm, quiet house.
p.s. I've already adjusted.
p.p.s. Reese will turn seven on Thursday-- at the camp. I hope she's okay
with having another "special" birthday. If you remember, last year, we celebrated
her birthday in the hospital.