The Shadow Sisters?

Cute picture alert!

Reese took this one of Kean and was puffing up her chest and all proud of herself.

That's the good news.

The bad news is her photography days are over.

She dropped Greer's brand new camera (Christmas present) and bent the lens.

I don't know who was more heartbroken... Reese for breaking the camera or Greer for losing it.

Poor girls.

As for the picture, look closely and you can see Fuzzball's fuzzy hair really starting to kick in.

 Grandpa Bodily came up this afternoon to hang out at the house while Kean took his nap

and Byron and I headed over to the school.

The entire first grade (four classes) put on the classic and highly acclaimed musical:

The Little Red Hen.

That's Reese in the front, center (deep red dress).  She played one of the hens

and stood out as the shortest kiddo in the entire grade.

She's also one of the cutest.

 And with all those teeth missing, it is a wonder she could even sing.

(Her talking at this stage is highly entertaining).

 Finally, we had a tender experience tonight.

But first, I have to give you the background.

On Sunday, I read an article titled Hey, What About Me!

It focused on the siblings of children with Cancer.

Frankly, I shouldn't have read it.

There was the mom who sent her daughter to live with relatives

out of state for a year and a half because she knew she couldn't give her the attention she deserved

while dealing with her son's treatment.

There were other parents who literally asked different friends to "adopt" each of their children

for the next few years to make sure they didn't get lost in the cracks.

Then there was the little girl who waved goodbye to her parents as they took her brother in to the hospital

and then they didn't come back for 30 days (sound familiar?).

Years have passed and that same little girl checks on her family every night after they are in bed

 to make sure they haven't disappeared.

All their examples and experts struck too many chords

and honestly, freaked me a out a bit.

They called these siblings "shadow children"

and I kept thinking of the three girls as the "shadow sisters".

That very day I caught myself holding a sad Reese and an emotional Greer

and yet when Kean started wailing, I immediately pushed them aside and went to comfort him.

Blehhhh.

They have sacrificed so much already and we still have two and a half years to go.

They've had to cut back on activities, forgo having most of their friends over,

deal with their mom and brother being gone for long stretches at a time

and then put up with exhausted, stressed out parents who don't have much left to give.

Honestly, I was starting to feel down when I got a phone call from a friend (more like

a call from an angel).

Peppi McIntosh called up saying she and her daughter, Natalia

were picking the girls up Thursday night and taking them to see the

ballet, Swan Lake.

It was a sweet slap in the face.

A reminder of all the love, giving and filling in we've had from

friends and family.

Yes, there will be some fall out.  There has to be after the trauma

we are going through.  But, and this is a big but... for the most part,

I think the girls are doing quite well.  My parents have done so much

and many others have stepped up and filled in the gaps over and over again where we've fallen short.

You know who you are!!!

Perhaps I'll write a book someday -- the go to guide and example ridden book about the art of serving

others.  Of course, I'll be writing it from the not giving but getting perspective.

Yes... we will survive. 



Finally Some Perks

Keanut is still holding strong--- shocking all of us with his ability to hold

his Chemo (I hope you didn't think I was going to write liquor)!

He had Physical Therapy at 8 this morning.  It was a bit chaotic in that I was

trying to get the girls out the door and off to school.

We had to bump it up since Kean had an appointment with his Ear, Nose and Throat doc.

Here's the beautiful thing... normally, this group of doctors has, oh, I'd say

approximately 70 people waiting in their three waiting areas.

I had called them up in advance to let them know Kean is immune suppressed

and can't be around all those people.

I offered to wait in the car but they said to come in and they'd put us in a room.

Normally, the wait in this office is a minimum of 30 minutes (up to two hours-- it is awful).

Today, we were in, seen and out the door in 35 minutes flat.

Yes-- the perks of having a kid with Cancer.  We will gladly

use it in this case for our benefit.  I'm telling you it was a thing of beauty.



 Maureen, Kean's Occupational Therapist made her weekly visit today.

I'm not sure who loves her more... me or Boy Wonder.

It is a joy to have her come to our house each week.

I guess if I stop and think about it... there is more than one perk

when it comes to Kean and his Cancer.

The Revolving Door

Today was less than quiet.

We had non stop company... and I have to admit, it was quite nice to change things up.

Even though Kean got a truck load of Chemo yesterday, we stuck with his therapy schedule for today.

Leni, his new speech therapist mostly played with him today, while trying to get him to verbalize

and sign.



 Let's just say, Kean was totally into the playing part-- but not so much

the working part.

 He just didn't have much energy.  But... he found enough to plop on top of Leni

and get her to do the crab walk up and down the stairs and around the house.

I think that's his idea of therapy when he's not feeling so good...

to get everyone else to do the work!

 Then our dear friend, Pam Brown came over.. so she could love on

Boy Wonder, read him stories and give his mom some adult conversation.

Finally,  wonderful Melanie Clark spent the afternoon cooking up a storm.

Get this... we made 21 freezer meals (7 for me, 7 for her and 7 for her daughter).

Just take a look at our recyclable pile.

Proof we were busy.

And to wrap up the evening,  we had Grandma and Grandpa over

for dinner and blackberry cobbler.

Happy birthday mom.  

I'm probably getting on your nerves by saying this again-- but

I have the best friends and family.

We feel so very loved.

Another Chemo Cocktail

Well, we made it through another Chemo day... which means we are that much closer

to ending this journey.

I just choose to think of it that way... rather than being overwhelmed with the

September 13, 2015 end date.

Today, my dear friend Stacey Hofman was our date.

I can't believe how many great friends we are surrounded by...

great friends who have the talent and capacity to make a long day of Chemo

actually an enjoyable event.

 Plus it helps we adore the nurses and doctors who work at MSTI.

Penny- you've met before.  She's lovingly referred to as the Chemo Queen.

Kean always lights up when she is around to sing and dance with him.

But today, he was very focused on the video Cars.

We had to wait quite a while it seemed for the Chemo drugs to arrive from the pharmacy.

Kean's counts were so good today (just over a thousand) that the doc bumped up

the amount of Chemo he was given.



This phase that he is in calls for the amount of Chemo to be increased

each time... if his counts are above 750.

Isn't that crazy... with any other disease, it seems like if you are doing better

they cut back the medicine, instead of increasing it.

Oh well, nothing about Cancer makes very much sense.

We're just thrilled he's doing so well.

And we attribute that to your many prayers.

Thank you.

Celebrate

We opted to celebrate my mom's birthday tonight (instead of Tuesday)

and no surprise here, the girls came up with a little program

for the birthday girl.

 First off, a little ballet... which turned into mostly twirling and leaping.

Kean even got in on the action - obviously, he is having a better day than yesterday.

Thank heavens.

Holland and my niece, Morgan took turns doing magic tricks. 

Reese even threw in a little jump rope exhibition.

 And then... (finally) it was present time.

Reese put a gift bag together all on her own.

Inside... she made a homemade card and gave Grammy 1 dollar and 50 cents.

Can't wait to see the shopping spree she goes on with that mother lode.

It was truly very cute.

Then all the grand kids had written up their testimonies of Christ and gave

them to my mom.

 It was quite touching to hear each child read their sweet and simple testimonies.

I think this is one birthday we won't forget.

Kean also won't likely forget that during rehearsals today, the girls

dressed him up in a top hat and a tutu.

Poor kid. As if he doesn't have enough to fight off.

Tomorrow is Chemo day.

Keep your fingers crossed that all goes well.

Introducing My Son - the Vampire

Don't say I didn't warn you if you come over to the house.

Angel boy has been replaced by Pill Boy.

Well, not all the time.

But today he had his moments and let's just say those moments

outweighed the good ones.

As you can see... our day wasn't pretty.

Kean keeps hanging on his mouth.  I don't know if that means he is getting

mouth sores again (this is that phase) or if his jaw hurts (another lovely side

effect of this phase).  Needless to say he's miserable - on and off.

And when he's miserable or frustrated, he lashes out.

Let's see, today I got bit hard on my thigh (one of many bites-- but this is the only one that left a mark).

And we've all had our hair pulled, grabbed and yanked.

Case in point: two of my friends from church came by yesterday-- one got her hair pulled, the other

had a nibble on her toe.

Poor Reesey usually gets the brunt of it.

Probably because she can't help herself... it is like she addicted to touching him, hugging him and loving on him.

I don't mean to paint a bad picture of our little boy.

He's still as sweet as ever... but when he doesn't feel good.  Watch out.



A Little Break For the Little Boy

Breaking news...

I got a call tonight from the hospital.

Kean's planned Spinal Tap for Monday has been changed to

just regular doses of Chemo through his port.

(His next sppointment will be a Spinal)

But for now, we are thrilled that he doesn't have to fast or go under for next week's treatment.

 Trust me, that's cause to celebrate.

 Keanut has definitely turned a corner.

Finally, finally he slept through the night.

And for this over-the-hill mother... that is huge!

His cough is settling down and he was much happier today.

 Tonight, by the way, my folks watched Kean for a bit, while Byron and I took

the girls out to Sizzler.  They had earned free dinners from a reading project

and were thrilled to get to go out as a family (minus one).

The manager of the restaurant came over to talk to us and when he found

out that the girls had to leave their little brother at home, he had the kitchen

cook up a kids meal to go (to take home to Boy Wonder) and

gave each of the girls another reading coupon for a free dinner.

The little ladies thought it was the most awesome of nights.

Especially since when they got home, they talked their parents (suckers)

into letting them build a huge fort for the night.

Sweet dreams.

There's Hope

Yes... hope that just tonight Keanut is turning a corner and finally feeling a bit better.

He had a rough night last night.  You know, one of those nights when you are up all night, he's crying non stop

and you figure you'll be

dragging the kiddo down to the doctors the minute they open.

But by morning, he wasn't so bad and then you start questioning yourself and playing the should I call

or shouldn't I call game.

Hate that.

He did wake up from his nap in a much better place-- and even played 'hide under the hat'

with his poppa tonight.



Of course, the main game we seem to be playing in this house is get

him finally feeling better so he can go to the hospital on

Monday, get a double dose of Chemo, get knocked down

and start the process all over again.

What's that saying... what doesn't kill you, makes you stronger?

We'll be competing in the Ironman by the time this is all over.

Draggin'

Fuzzball is keeping us guessing.

His fever finally broke but he has been Miserable- with a capital M.

We did manage to pull off two therapy sessions- albeit shortened ones. 

 Andrea and her intern Katie got him up and walking behind his little red Mustang.

 But he didn't make it too far.

He seemed to like resting on the flashing lights.  He is such a funny kid.

Maureen came at lunchtime and while he didn't have loads of energy,

we did get him to play ball.

Poor little one just didn't have much energy today.

No surprise, he was up quite a bit in the night, has a nose like a mountain stream

and a wicked cough.

But his body is doing something right-- 'cause he beat the fever

at least for today and hopefully for good.

We are making a progress on our fundraiser concert.

Got lots of feelers going out.

Keep your fingers crossed someone big has a big heart!

 

Music To My Ears

Kean did somewhat better today as far as the fever went.

But unfortunately, it was back this evening (right around 100.4).

He's in bed now and we're hoping for a night with no surprises.

He had his first session with his new Speech Therapist today, Leni.

You'd think they were old friends-- he was totally comfortable with her.

And I think they'll be great together.

One exciting bit of news to throw out--

Two friends came over for lunch today-- Dustin Simpson who came up with the idea to

throw a concert this summer to raise money in honor of Kean -- we decided the money should go for the St. Luke's

Pediatric Oncology unit that will be part of the new children's hospital tower they

will be building.

We met with Drew LaRona who works with one of the big concert promoters in town. 

We hammered out all kinds of details but it all hinges on pulling in a big name act. 

We decided if we are going to go to all this work... we might as well go big.

So if you have any great connections in the world of music-- dust 'em off

and get dialing or emailing.  This is for a good cause-- one all too near and dear to my heart.

C'mon Team Kean.



A Brand On His Forehead



I have taken Kean's temperature so many times today... it is a wonder he doesn't

have a permanent mark across his head.

His Croup is tons better... meaning he is breathing without laboring. But he still has a nasty

cough and has been running just under the dreaded 101 all day. (101 is our signal to head to the hospital).

 

 I did talk to the nurse at MSTI today.  Since we were just in the E.R. yesterday, had his blood taken

and his counts were good... I was "allowed" to give Kean some Tylenol since he is so miserable.

Crazy how I have to get permission to give the boy Tylenol.  But they don't want the

medicine masking an illness if that makes sense.

Even with the Tylenol though, he was still running in the high 99's.

He is definitely fighting something.  Let's just hope his counts are high enough for him

to get over this on his own and more importantly somehow avoid a little

staycation at hotel St. Luke's.



Midnight Run...

I guess things were going along a little too well.

Kean woke up a little after midnight once again sounding like a seal barking.

Let's see, he's had Croup now at least four times since the Cancer came on board-- I don't

even get stressed over it anymore.

I just hate, hate, hate spending the night in the E.R.

But off we went after a breathing treatment at home did nothing but make him mad.

At least I didn't have to battle an ice storm this time to get to the hospital.

 It is absolutely amazing what a difference modern medication makes when it comes to Croup.

He sounded like a different child by the time we left.

We got home a little after 4 this morning-- but both of us seemed to have a hard time going right back to sleep.

Could be the Steroids he was hopped up on.

This morning he was markedly better... he still has a lingering cough.

I guess with Reese sick and me battling my sinuses... it was only a matter of time.

He sure is grouchy this afternoon though.  My grand idea to get a nap in hasn't worked

out in that he decided to take the world's shortest nap on record.

Oh well, perhaps an early bedtime...

S'more Than Enough

I'm starting to see the effects of the Chemo cocktail kick in.

Kean had more good than bad moments today... but he's starting to drag.

Thank heaven for big sisters who never tire of playing trucks and dinosaurs with him.



 The weather today was a tease-- absolutely magnificent. But I think snow is expected on Tuesday.

So we decided to build a fire outside and roast cheese dogs and eat S'mores.

 Fuzzball was in heaven hanging outside and hangin' with dad.

The agenda for tonight... lots of swinging

and of course, motorcycle rides for Keanut.

 By the way, he said "motorcycle" not once, but twice

tonight.

Clear as a bell.