A Stroll in the Snow

We are getting a little bit stir crazy over here.

So even though the temps have been high enough to really start melting the snow yesterday and today...

the boy and I went out for a ride with his sled.

Suffice it to say, I got a good little work out - slogging him through the slush.

One of Kean's Down syndrome buddies from the days when he was in Tumble Time...

an adorable little girl by the name of Mirabel is very, very close

to walking.  Her mom, a fitness guru, started a facebook site to get people up

and moving to inspire Miss Mirabel.
So far, over 900 people from all over the world have joined her site... as we have.

Today's walk was for her.



Here's a link to the site.

https://www.facebook.com/events/477046175670405/479145278793828/?notif_t=plan_mall_activity

Our other big highlight of the day was

visiting Grandpa Bodily next door.

Kean is still healthy, hanging in there

and not quite as much of a pill as he was yesterday.

However, he did decide dinner was optional this evening.

Guess it always has to be something.

Fourteen Years...

Kean was a little off today... but still in the good category.

He just didn't want to cooperate much for therapy

and that's putting it nicely.

Even though he looks all kissable and sweetness here...

he was actually quite the pill today.

On a crazier note,

today marks our fourteenth wedding anniversary.

Hard to believe we went from this...

to this.

In that Holland is finally old enough to babysit for short stints (insert screams for joy here please),

Byron and I went out for the evening.

We just got home and the kids strung a big banner with a timeline

across the hall.

So cute.

Wow, where did the time go?

High Jinx At Home

I'm not sure who was in a better mood today...

the kid

or the mom.

Not having to give and get shots just made the day seem really quite sunny

(even though we got another 4 or so inches of snow last night)!

 Low counts... who'd ever know.

 Kean has been happy and playful all day.

Especially with Reese this evening.

Who, by the way, came home so sad that she is the shortest kid in her class.

At lease she's not the skinniest.

Check out this picture of Greer.

That is an 8 inch by 8 inch box.



And she's wearing her heavy winter coat!

No More Heroin Tracks

Today was a very, very good day.

Both for Keanut and myself.

I'll explain why in a moment...

But first, my friend Melanie Clark was this week's date to the hospital.



 Kean loves Melanie.

 The nurses took his blood and his counts came back very low... just over 200.

(Remember normal is 1000 to 9000).

What is so interesting about his counts is that one week ago, he was at 330.  Then on Thursday

morning when we were lucky enough to visit the Emergency Room in the middle of the night,

his counts came in at just over a thousand.

Then of course, he was back down today.

Dr. Meeker told us that is not unusual... when he was sick, his body did what it was supposed to do

and kicked the counts up to fight off the Croup.  Once that was taken care of, he plummeted back

to his Chemo depleted numbers.

Suffice it to say, he is about where he should be during this part of his treatment.

Now for the really good news.

In fact, I can't decide if we should consider this a late Christmas present or

an early Valentine's gift.

Either way, this is huge.

Dr. Meeker took Kean off his Lovenox shots today.

That means I'm off the hook for giving him shots in his belly every morning and every night.

That means, our lives won't revolve around being home by 8:15 to give him a shot.

That means, his belly won't look like he's an addict.

That means we will no longer have a Sharp's container (for needle disposal) sitting prominently

in our family room.

I can't begin to put into words how happy this makes me.

I don't know who hated those shots more... me, the giver

or him, the getter.

We did end up heading over to the third floor for an Ultrasound

to see if the blood clot that started him on those shots clear back

at the beginning of August has dissolved or turned into scar tissue.

 Even though Melanie and I sang every song we could think of...

Keanut was not hip on holding still.

After several tries, the Ultrasound tech said he was moving too much

or tensing up and she couldn't get what she needed.

Lucky for us, we still get to stop the shots

and they will try to do the Ultrasound next Tuesday

when he is scheduled to go under for a Spinal Tap.

That is... if his counts are high enough by then.

Dudley Do Rights

Kean is learning from the best of 'em.

That would be Mr. Barker.

While the girls and I went to church, Byron took our boy

out for the mother of all tractor rides.

They rode the skid steer for about an hour and a half

while they scraped the ice off not only our drive, but our neighbors--

Grandpa Bodily's and Johanna's.

What a cute team they make.

I guess when they went to park the ol' skid steer, Kean saw

his regular ride... the tractor and immediately wanted to go for another ride.

What a funny boy.

He just can't get enough.

We are off to the hospital in the morning

for blood work and a meeting with the doctor.

It will be interesting to see what his counts are doing.

He sure seems good.

We are so very blessed.

Welcome Home

Keanut and I had a pretty quiet day.

Pops was stuck up in the mountains...

and our dear friend Mary K took the girls (and her nephew)

for much of the afternoon and evening.

She spoiled them with a movie, Jump Time and out for burgers.

It is no wonder my children adore her.

Greer took these pictures of Kean for me.



 He wasn't too happy to be stuck inside while it rained all day.

At least the temperatures aren't in the teens anymore.

Poor Byron did make it home after six hours of driving.

Since the roads were closed, they had to go up and around what probably

seemed like half the state just to get home.



It's probably a toss up as to who was more tired from their big day...

Byron or Reese.

Sweet Dreams

Our boy is doing great.

A little gunky in his breathing but that's it.

In fact, take a look... he slept soundly (and from the looks of it,

quite comfortably) straight through the night.

 Byron headed off this morning with a couple of guys from church.

They headed up to the mountains to take in the food, wood and get the cabins

ready for a youth group that was supposed to snowmobile in this evening after school.

Only problem, I got a call at dinnertime from the wife of one of the youth leaders

saying the roads are closed and they can't get into the staging area where they are

supposed to park and then get on snowmobiles.

I have no way of contacting Byron to let him know they will be alone tonight

(with enough food to feed a small army).

Now, while it's not quite as exciting as snowmobiling, I did take Kean

out of the house for a little sledding.  Today was finally warm enough

to take the boy out doors.

Little pill.

He thinks bald is so beautiful he doesn't want to cover it up.

Even in the cold.

Falling Down... again.

And here I thought we had dodged the bullet.

Nope.

Kean woke up at 1 a.m. sounding like a seal barking and having a hard time breathing.

A call to the Oncologist sent us downtown to the hospital instead of an emergency room much closer.

She told us to pack a bag and plan to stay since Kean's counts have been so low.

So off we went.

Which was an adventure in itself.

We left in the middle of what can best be described as an ice storm.

It was so bad, I had to keep pulling over to scrape my frozen over windshield

(even though I had my wipers and defrost going full blast).

On the second time I pulled over, a police officer pulled up behind me.

He ended up helping me scrape my windows and giving Kean a teddy bear.

The streets leading to downtown were pretty sparse but  the other cars

were having to do the same thing.

I just happened to have a very nice officer following me, stopping with me

and helping me clean off my window.

It was still very stressful and by the time I made it through the slick streets to the E.R.,

I was ready for them to admit me alongside Kean!

Poor little guy.

He has Croup.

They put a catheter in him, accessed his port, drew blood, x-rayed his chest and lungs,

gave him a breathing treatment and a shot of steroids.

This is what he sounded like after all the treatment!



Now for the shocking news.

His counts have gone up.

He is no longer in the danger zone... so drum roll please...

they let us go home.

We got home after a slippery ride but not nearly as harrowing as the drive there.

We were both in bed by 6 a.m.

and let me tell you how grateful we are for modern meds.

This is him today.

 While grouchy... he looks and sounds almost normal.

And bonus... while many schools closed around here because of the icy driving conditions...

our girls did go.

Which translated into a quiet house

and a perfect place for a long nap.

More Gray Hair

Whoosh.

I'm not sure how to put the sound of my exhaling a big breath down in print.

But there you have it.

We dodged the ol' trip to the hospital.

Kean was up on and off most of last night with a fever that ran right around 99.7.

He never topped that dreaded 101-- thank heaven!

And get this, he woke up this morning as normal and happy as ever.

Of course, I think I shaved off another few years of my life.

Maureen came for occupational therapy.

For some reason, he loves taking her up into his bedroom (that's Reese's side in the background).

I'm hoping this isn't a foreshadowing of things to come... bringing girls up to his bedroom!

 It has been awfully cold here.

Too cold for tractor rides.

Thankfully, I have creative, loving girls who

took him for ride after ride tonight.

We had our dear friends, the Borup's over for dinner.

After being cooped up all day on house arrest, it's a big deal

to have such fun guests over for lots of laughter. 

The other big excitement was that Reese finally lost her front tooth.

It has been loose for what seems like forever.

She didn't want any help and got her nerve up to pull it out herself.

The little one was as proud as a peacock

over her new gappy smile.



F.L.E.X.I.B.L.E.

Flexible is on Greer's spelling list.

And we will make that the word of the day.

Mr. Edgy decided to wake up from his nap this afternoon with a fever... running about 100.3 to 100.7.

May I remind you we earn a trip to the E.R. if he hits 101.

Ug.

After dinner and a bath, he's down to about 99.

So we are heading in the right direction.

I'm just trying to be flexible in case all my plans get

traded in for the sights and sounds of our local hospital.

Double Ug.

The Dating Machine

Even though today was a holiday for the kids from school,

it wasn't a holiday for Kean from the hospital.

And since the girls didn't have school today... wanna venture a guess

as to who Kean took as his "dates" to the hospital?

He didn't have Chemo today... but did have to do a full blood work-up.

And remember, we have to get his arms and angle of his body just right

oftentimes to get his blood to cooperate.

Thankfully, today it wasn't just me and the nurses singing!

I got several compliments from the staff at how sweet and well behaved the girls were today.

Guess my threatening them in the car worked for once- ha, ha.

They stayed out in the lobby with Jen, one of the child life specialists

(she plays with kids for her job) while Kean and I met with Dr. Hansen.

So here's the scoop on our boy.

His counts went back down again (around 300) but that is to be

expected with all the Chemo he just finished.  He is back in the Neutropenic category

which means he's dangerously susceptible to infections.

We go back in next Monday for blood and a check up but are off

the Chemo "not so merry go round" for two weeks to let

his body recover.  Then... he starts the Maintenance phase (if his counts are high enough).

You need to cheer at that news.  We've been slogging along hoping, hoping to

eventually make it to the Maintenance phase - the phase he will be in for the next 2 years and 8 months.

It will be - in theory - a much easier pace for our family and Kean's Chemo treatments.

The Doc once again reinforced how well our boy is doing.

I attribute that fact to the power of prayer.

Thank you for all the whispered prayers, out loud and in your hearts

on behalf of our little guy.

 

The Odds

Tonight marks the last night for Kean to take his oral Chemo.

At least for the next two weeks.

He gets this break so he can recover.

The protocol he has been on is supposed to hit him pretty hard-- so far, we

haven't seen it.  He is relatively happy.

His big excitement today was waiting for the tractor to warm up so

he could go with dad for a ride.

While Byron took the girls to church and Kean took a nap,

I hit the computer.

Remember how Kean was in a photo shoot the other day for a couple of his

doctors who are shaving their heads to raise money for children's Cancer research?

As part of that we have been asked to sign Kean up to be honored on the St. Baldrick's web site.

I got on there and found it so terribly sad.  Several of the featured children

have passed away.

Here it is supposed to be inspiring... a site to get folks to donate.

And all I could do was sob today as I looked at these amazing children who have lost their lives.

1 out of 5 children who get Cancer don't survive.

I am operating on 100 percent faith that Kean will live through this.

He has done so well, I have no reason to doubt my convictions.

But I guess I'm just feeling a bit of guilt that he is alive and doing amazingly well...

when so many don't.

I hope that is normal.

 

 

 

Swingin' Saturday

Somehow our little miracle boy is still hanging tough.

I don't want to jinx it... but this second half of this worst phase hasn't been too bad.

Kean ate a great dinner tonight,

he took a decent nap today

and he's been moderately happy.

Who wouldn't be... with three sisters to play with him.

Don't worry, there was adult supervision at all times with the swinging.

I have to mention that this afternoon, Holland's fabulous 6th grade homeroom

teacher picked her up for the afternoon.  Holland and a few other students

raised money for our local Humane Society.

In just two weeks they raised nearly 150 bucks and stacks of

supplies and treats for the animals.

At the last minute, the other students couldn't go... so it just

ended up being Holland and Mrs. Ramirez.

Our girl came home wanting to adopt all the animals

at the shelter.  She has a soft heart, that one.

I'm so proud of her.  She gathered up a dog bed and an igloo

dog house from a couple of our neighbors.

And even though it was wicked cold, she cleaned up the dog house

so it would look and smell its best.

I love that my kids love to help others (two legged and four legged).

Now if I could just get them more excited about helping around the house.

Guess that is every parents challenge.

Homebound

In the big cosmic scheme of things, I suppose it is a good time for Kean to be on house arrest.

It is Antarctica cold here.

The high was only in the teens (about two degrees this morning for the walk and wait for the bus)

 and everything is covered with ice crystals.

I'll give Mother Nature points for beauty

but I'll stop there.

I'm ready for warmer temps.

Keanut Butter is loooow energy.

I was looking at him -- well studying him really.

He has lost much of his eyebrow hair

and his eyelashes are pretty spotty.

Thank heavens for three sisters who entertain him and make him happy.

Greer spent a good half hour dancing with him and dancing for him.

Combine that with a long tractor ride with Pappa

and I think it was a good day for our boy.

Dance Party

Kean's trip to the hospital and subsequent Chemo was

actually quite entertaining today.

First off, we had a party going on in the blood draw room-- dancing,

singing-- you name it.

Sometimes, Kean's port is a bit persnickety and we have to get his arms

up above his head and getting him leaning forward just so... to get his blood to flow.

Cindy Jones was not only our date, but the holder of the boy today...

and an old pro at getting him and his port to cooperate.

We hung around longer than usual... first off, to get his counts,

which have crept up to 600.  Go figure.

With two daily doses of Chemo who would've ever thought they'd go up.

But this round of Chemo is not expected to take it's toll for another week or week and a half.

Kean also participated in another photo shoot.

Two of Kean's doctors have agreed to shave their heads to raise money for children's

Cancer research. 

So they gathered up all the "baldies" to act like they were going after the doc's locks

for a poster that will be plastered around the hospital.

Kean is sitting in the lap of Dr. Meeker (one of his Oncologists)-- and that is a mullet

wig he is wearing.

The other doc, is Derek-- an Intensivist from the PICU.

Kean was the least cooperative... he just wanted out of there.

But hopefully, they got a few decent shots to work with.

He has sure been grouchy and clingy tonight. 
Pops just took him for a "before bedtime" tractor ride.

Hopefully, that will bring back some smiles.

From 0 to 50...

Our day went from normal to insane in a blink.
Kean was low energy until his favorite therapist and
probably favorite visitor in the world (Maureen) came by.
He was so animated for her... copying sounds and gestures. 



 Take a look at this video of the two of them looking at his favorite animal book.

He made more sounds today than he's made in months.

 

 Just as Maureen left, the home health nurse arrived to give Kean his Chemo.

Only, this time, if you look closely, you can see blood in his port tubing

and wouldn't you know it, she couldn't get it to flush or return fresh blood-- it was clotted.

 The poor nurse tried and tried but to no avail.

So after a phone call to the Cancer docs, we packed up and headed down to,

yup, you guessed it, the hospital.

They were worried that he had a blood clot around his port (since he

has a history of clots).  I was trying not to freak (it had been an emotional morning--

our little friend, Audrey -- in the hospital-- and just like Kean with Down syndrome and Leukemia

got some pretty depressing news this morning).

Once at the Cancer clinic, things were weird but not so bad.

The needle in his port had somehow gotten bent.

Probably from something as simple as climbing up and down from the couch.

He had crusty, dried blood all behind the needle apparatus.

So they pulled it out, cleaned him up, put numbing cream

on him and let us wait for about an hour

before re-accessing him and then giving him his Chemo.

Thank heavens all of that went smoothly.  That's the good news.

The bad news is, he was slightly swollen so they had to use a much longer needle...

a needle they didn't dare leave in.  So they had to take it out when they were done

today and we have to turn around and go back in tomorrow for his next (and final)

dose of Chemo through a port (for this round).  In other words, I cancelled the home health nurse.

We did run into our other favorite Chemo patient... Kendra and her sister Kaitlyn.

That always makes our day.

And we love seeing her new curly hair.

I guess before she lost all of her hair it was only slightly wavy.

This crazy Chemo.  I've told you Kean's hair (he's losing it again) was coming

in much blonder. 

 A huge, huge thank you to Cindy Jones... who literally dropped everything

and met this most wimpy mom down at the hospital so

she didn't have to wrestle Kean all alone.

 We must not have sucked her too dry.

She's going to be our Chemo date again tomorrow. 

 

 

Zzzzzz

Wow.  Another good day.

We are on quite a roll.

Even though Kean is on an oral Chemo and another one in his port,

the anti-nausea meds are doing their job--  he's acting good and we've

had no 'clean-up on aisle 9's".

The biggest side effect I'm noticing is he is one tired pup.

I had a challenge on my hands keeping him awake today.

The home health nurse was scheduled to give an "infusion"

to a child at a school in Nampa.

Get this, while she was there, the school had a lock-down exercise and she got

stuck there for an extra hour.

Kean was one tired kid by the time she drove across town, got here and

gave him his Chemo.

Literally, the minute she was finished, he was ready for his nap.

I should admit one of the positives of this extra dose of exhaustion

is that my little guy is wanting extra cuddle time.

You won't hear any complaining on my part.

His Fan Club

Wow, did we have a good day at the hospital.

And how fun was that... to get to be able to say that!

Jen was waiting for Kean... her job is to play with the kiddos who have Cancer.

You can tell by his smile that he loves Jen and what a sweet gig she has.

While we were getting Kean's blood draws, we were told we had a visitor...

meet Brooke Linville.  She is a friend of a friend's and after hearing and reading

about Kean asked to see us. 

 She told us the most touching story.  She turned thirty recently and wanted

to do something significant instead of just partying.

So she set out to do 30 acts of kindness.  She created a facebook page

and asked for cards of hope to be sent to Kean.

She also had her son's pre-school class make get well cards for our boy.

These are just a few of the nearly 20 cards she brought-- all so cute and so full of love.

We then met with Dr. Meeker, who told us he just wished all

of their Down syndrome patients could do as well as Kean.

He truly has been amazing in how well he's done.

I completely attribute that to all of the prayers, love and support he has been given.

His counts have plummeted to 330 something.

But he's hanging tough for now.

He did get the first of four consecutive days of Arac (pronounced Air-uh-see).

This one is supposed to kick him pretty hard but takes a couple of weeks.

This will be his second week on the stuff.

But check out how kicked back and comfy he was in the Chemo suite

today waiting to be hooked up.

We put on the movie Cars and I think we have found a new favorite.

Elly was our Chemo date today.

We, of course stopped and hit the Mexican food drive through...

and tried to stuff him full before he follows suit and

loses his appetite from the Chemo for the next several days.

Our little rock star continues to rock.

Almost Normal

Today was one of those days if you didn't see some bald little guy sitting in our midst, you'd

think all was just fine.

And it pretty much was.

It was Byron's turn to stay home with Keanut and my turn to take the girls to church.

My parents have been in Vegas for the past week and a half, they drove home today

and joined us for dinner.

After they left, we made caramel popcorn and watched a movie together as a family.

I have no earthly idea why Kean is making such a crazy face on the couch...

But it was this perfectly relaxing evening.

Tomorrow, after the girls head to school, Kean and I will head

down to our old stomping grounds-- the hospital.

He's scheduled for more Chemo tomorrow.

Poor guy.  He's been feeling great the last few days

and finally has his appetite back-- just in time to get hit again tomorrow.