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.