The Caregiver

Dang... no great news to report of Kean continuing with his walking practice today.

I could tell he was not feeling too well and therefore, wanted nothing to do with putting

one foot in front of the other.

Poor little guy.

It was one of those cuddle days.

Good thing too.

It was kind of a hard day for me as well.

Kean lost another one of his sweet friends to cancer.

A little girl-- who reminds me so very much of Greer.

Same age, same build, same spark.

I ache for her mother.  I never met the rest of her family.

I just got to know Lula and her mom from the halls of the hospital

and the clinic for chemo.

Lula was pretty amazing-- she planned her entire funeral before she died-

and it sounds like it will be a spectacular celebration of her life.  I'm sad we are going to miss it.

These children really are heroic.

I had an interesting experience at the grocery store this afternoon while Kean napped.

There was a couple checking out behind me-- and while he paid,

the older woman put her hands on my cart and just stood there.

Her husband, (I assume) got all angry with her.

I smiled at her and told her, she was welcome to help me anytime.

She just stared blankly and I quickly realized she must suffer from

some sort of dementia.

I looked to the husband, gave him a smile to let him know it was all okay

and he just glared at me and then briskly grabbed her, pulled her hands from my cart

and steered her away.

I thought my heart would just break.

Don't you worry what her life is like behind closed doors?

As a full time caregiver, I more than understand how drained, empty and exhausted

you feel on a pretty regular basis.

However, how can anyone be so cruel to someone so helpless?

I guess I've been surrounded by the best of examples and so seeing something

like this just shocks me to the core.

I watched as my grandmother took care of my grandfather for a number of years.

It was a beautiful thing to watch-- I remember when he would say the same things

over and over again or re-tell the same stories,

my grandmother's attitude was "isn't it just wonderful that he can

get excited all over again".

She was the picture of patience and love.

And then there is my neighbor, Grandpa Bodily- a man I don't think I could adore

anymore than I already do.

His first wife spent nearly 5 years in a nursing home with Alzheimer's.

He visited her every single day-- except for maybe 4 days out of those almost five years.

She had no idea who he was for many of those years and yet he faithfully served her

day in and day out.

His attitude was she took such good care of me for all those years, it is just my turn.

Oh, if only more people would follow his sweet example.

These Boots Were Made For Walking...

For a boy who got Chemo yesterday... Kean dazzled this morning at therapy.

Well, at least for a few minutes.

We worked on walking.

I'll let the pictures do the talking.

(ohh, I love it when I rhyme).

He sure did his best ever.

And oh, are we ever close to him taking off.

If he'd just keep at it.  After a few "runs" he was done.

And trust me, nothing we could do would get him up and trying again.

But it was sure good while it lasted.

By the way, Reese went to school today.

We have to be thankful that whatever hit her was short lived.

Ah, Hah, Validation!

You should have seen my long list of items to discuss with Kean's cancer doctor

at his Chemo appointment today.

His chemo didn't take all that long-- but the waiting for meds and

discussions with the doctor took an eternity.

Marcie Cook was our very patient and very able Chemo date for the day.

She kept Kean very entertained while I dealt with everything.

 Kean, by the way, was pretty entertaining.

For the first time, he sat all by himself (not on my lap)

for vitals and Chemo.

And he also threw a man-sized fit while the doctor tried to 

check his throat, ears and then his body for swollen lymph nodes.

It took three of us to hold him down.

He's one strong little man!

So here's the scoop;

after a long discussion and a rehash of each of his four

"seizures" and what happened after each one, the doc

agrees with me that it is most likely a severe hypoglycemic

reaction to the chemo med (Mercapturpurine) he takes

nightly on an empty stomach.

She is going to prescribe a diabetes/glucose testing kit (you know the kind where

you poke his finger and take a little blood sample) so we have one on hand if and when

this happens again.  Then we'll know for sure.

But she also wants me to still see the Neurologist next month.

We discussed a ton of other issues-- but those are the highlights.

As for tonight, so far, Kean is feeling good.

Poor Reesey is another story.  She woke up in the wee hours with a stuffy nose,

sore throat and low grade fever.

I rushed her to my parents to spend the day while we went to the hospital.

This evening she is worse.  101 degrees.

Keep your fingers crossed I don't have another day with another doctor!

These dang kids...

The Cry Baby

I suppose after such an up day yesterday 

we were bound to come down a bit today.

Kean had his therapy school this morning and other than not wanting to use

his feet to walk on his own, he seemed fine when I dropped him off.

I had just finished my grocery shopping and got a call about an hour into his session,

saying he was crying hysterically and I needed to come.

He even kept crying once I got there.

It was really strange.

We could not figure out why in the world he was so upset.

They said he was totally happy for the first 40 minutes.

My mom's theory is he just needed to get it out-- all this

not feeling good and constantly getting poked and prodded finally built up to the breaking point.

Hmmmm, maybe.  By the time I got him home he was fine.

Tired but fine.

He took a decent nap and was ready for tonight.

We had Ron and Elly Moomey over for dinner, dessert and games.

With Greer's prodding, we played "Do you love me?"

The gist of the game is the person who is it... tries everything they can

to get their target to smile or laugh.

 Let's put it this way...

every single one of us were easy marks-- absolute losers

when it came to playing the game...

 except for Ron.

From now on, he'll be known as ol' stone face!

He rocked it!

 As always, Elly broke out the whipped cream

during dessert and went through nearly an entire bottle.

 I swear she cannot be trusted with the stuff.

 Just ask Holland.

Well, actually, Holland asked for it!

And, ohhhh, did she get it good.

Super Sunday

Today was Kean's best Sunday in a long time.

The weather was near perfect so we all went for bike rides--

except for Byron and Kean-- they were on the hallowed motorcycle.

 Too bad we didn't have an audience.

Kean giggled, sang and smiled much of the way.

 We all went over to my parents house for the evening.

Time to celebrate my mom's birthday on Wednesday

and my niece, Morgan's birthday last week.

I think Kean must have been invigorated from his ride in the great outdoors

because he was on one tonight---

kissing his cousins, motoring around, and even showing a willingness

to practice his walking over and over again.

Clearly, I had nothing to worry about.

The Heartless Butt Head! (How's that for a headline?)

I don't know whether to laugh hysterically or cry hysterically.

Remember how we finally got an appointment to see a Neurologist on March 10th?

Well, we couldn't get in to see the one the E.R. had referred us to for 4 to 6 weeks,

so I went ahead and booked with his partner.

Last night, I sent a message out on a closed group on Facebook--

a group for Idaho's Medically Complicated Children

(and let me tell you-- I'm thankful to have Kean's challenges and not what

some of these other mother's have to deal with).

Anyway, I asked if anyone had any experience with this particular doctor

we now have an appointment to see.

I got back a few lukewarm responses-- and then I got one that said 

quote:  "He's a heartless butt head"!

Okay, not quite sure how to take that.

Usually, I can handle most personalities... but I've never gone into an appointment

with such a biased opinion.

My new plan is to talk this over with Kean's Primary Oncologist during Tuesday's Chemo-- who heads

up the Children's Oncology Department here.

He'll have some advice (or will, perhaps, think I'm crazy)!

On a sweeter note, tonight just before dinner, Kean crawled over

to me and said "Mom, sicle"!

Two great milestones here:  

1.  He used two words

2.  He told me exactly what he wanted.

 And yes, of course I made him wait until after he ate dinner to have his treat.

Never mind that he didn't want to eat much dinner.

Oh, and his other big word today?

He is now calling Holland "Hottie".

Yes, we agree, she is a little hottie.

p.s.  cross your fingers that tomorrow is a quiet Sunday.

Two episodes (perhaps seizures) the past two Sundays

is enough.

If only it were as simple as Greer put it--

Perhaps Kean is just allergic to Sundays.

Dos Amigos

Taco night at the Barker Casa.

Kean ate two at dinner... then ate another one when his

dad got home from a meeting.

 Whoa... and not even on Steroids until next week.

 By the way, I'm hoping no one comes over to the house for a few days.

This is what our family room looks like...

No- we don't typically have our washer and dryer in front of the couch.

 We had to replace our water heater and the new one Byron got 

for a smoking deal is massive.

Listen to this little adventure- to put it in, he had to pull out our washer, dryer,

the shelves they sit on and the cabinets above.

Simple, right?

Wrongola.

As we removed the top cupboard, Byron backed out the last screw holding it up--

and water started spraying out of the wall like a fireman shooting a hose.

It was crazy-- we were all running around trying to turn off our well,

turn on every faucet in and outside the house to try and bring down the water pressure.

We finally got it to stop-- and boy, did we ever have a mess.

We were absolutely amazed to see that 8 to 9 years ago, when the cabinet was hung,

a screw was accidentally driven through the protector metal plate and right on through

the copper pipe.  It is a wonder we hadn't had a flood many years ago!

 MacGyver spent half the night cutting out old pipes, soddering new ones

(oh, and did I mention the smoke detectors in the house all went off at that point?),

checking the other pipes to make sure they weren't damaged- by cutting out the drywall,

and  removing the now- soaked insulation.

These pictures are from today-- not last night.

So you can see we are slowly getting there.

I'm just grateful I have a husband who can do pretty much anything--

include fix a massive mess!

A Medical Education

Just a quick update.
I'm too tired to do much more.
I did hear from the Pediatric Neurologist's office today.
Ladies and gentlemen-- we have liftoff:  an appointment 
for Monday, March 10th.
Meanwhile, Kean's Pediatrician (Dr. Sandstrom) called me
from her home on her day off to talk about Kean's episode.
I told her about my research on the Internet and what makes
most sense to me-- and get this, she agrees.
So for those of you who find this medical stuff interesting--
here's the theory:
I found a paper about a 4 year old boy with Acute Lymphoblastic Leukemia (Kean's Cancer) in the same phase as Kean's in, taking the same drug each night.  This child was having seizures brought on my severe Hypoglycemia.  
I looked up the symptoms for severe Hypoglycemia and they sure fit his symptoms.
Dr. Sandstrom looked up his glucose levels from the E.R. and they were just barely in the normal range:  65 (normal is 60 to 100).
Plus, on the other three occasions, he came around slowly but surely after I gave him Pediasure and whole milk.
When I took him to the E.R., they wouldn't let me give him anything to eat or drink until they ran some tests-- and boy, did those symptoms hang on.
So maybe, just maybe we are on to something.
Of course, there's nothing I can do or give him to prevent another episode. So it probably doesn't matter what it is.
We see his primary Oncologist on Tuesday.  We'll see what he has to say.

The Frog Prince

Why is nothing as easy as it should be?

I called the Pediatric Neurologist's office today to see if they had received

all of his records so we could actually make an appointment.

The good news is they have.

The bad news is the office nurses have to go through the reports before an appointment can be scheduled.

And the really bad news is the receptionist told me they are scheduling 4 to 6 weeks out.

Yes, you read that right.  I about freaked on her over the phone.

She did assure me they get cancellations and they will likely see him sooner but that didn't make me feel much better.

Our family is on edge waiting for the other shoe to drop-- let me translate-- waiting for another 'episode'.

Here's a perfect example.  I put Kean to bed last night and he finally settled down.

Holland had gone upstairs to print some homework off on the printer and while she

waited she went and checked on Kean.

She came running downstairs in a panic saying he was staring into space,

his forehead was hot and she was certain something was very wrong.

Of course, I went running up.

I took his temperature-- which was fine.

But here's the deal:  I think he was just about asleep when Holland checked on him.

Because by the time we went up there, took his temp and checked him over-- he was just fine

but now full on wide awake.

So awake... he played in his crib until nearly midnight!!!

What a mess we all are.

We worked on Kean's attempts at getting his confidence up in the walking department today

with his P.T., Andrea.

He had one a little better than this one-- that I didn't capture on video.

He walked about five steps.

Slow but steady wins the race, eh?

I've been thinking a lot about all these medications I have to pump into his body

and wondering if they are the culprits for these 'episodes'.

Today he got both of the meds (that according to articles on the Internet)

sometimes cause seizures.  Kinda scary to keep giving him them-- but geez,

what's the alternative.  We have to fight the cancer.

Speaking of meds... here's one for the calendar pin-ups...

here's a throw back to his heavy Steroid days.

I'd like to title this "The Frog Prince".

Rib bit!

The Dull Roar

Life has settled back down to a dull roar.

I think that's just how we roll around here- at least for now.

I did some research on the computer today-- don't know if that was a good idea or a bad one.

Two of the Chemo drugs Kean takes (one each night, one once a week)

both have been known to cause seizures in kids with his type of Cancer.

So guess what' I'm leaning towards as the reason for his "episodes".

I'll have to wait for the Neurologist and his battery of tests to see for sure.

While Kean napped this afternoon, I ran over to the girls school to hear Greer present her Pace project.

The kids spend months in the fifth grade studying the Constitution.  That research culminates

with each student having to present a speech (they research and write it entirely at school)

on an assigned topic.  Greer got "How does the Constitution protect Freedom

of Expression".  Today was practice day for the parents.  On Thursday, she and her 

fellow students have to present to a panel of adults.  After they each give a speech,

the kids in her group have to answer questions from the panel 

about the Bill of Rights and the First Amendment.

Talk about pressure!!!

They all did great.

Get this, at the exact same time Greer was giving her big speech,

Holland was serving as the co-emcee for her school's President's Day assembly.

She dazzled (at least in her mother's opinion).

Tonight was crazeee at home!

My wonderfully talented friend, Sheryl Alderman

brought all of her tools over to the house and gave Holland, Reese

and Kean much needed haircuts.

This picture is BEFORE Kean completely freaked out.

We decided he did not like the electric clippers buzzing in his ears.

I swear he screamed and bucked almost as much as he did in the E.R.

on Sunday when they were catheterizing him!

 Of course Reese and Holland were star pupils.

I told Sheryl she should earn combat pay for putting up with Kean.

 Here are our little rug rats with their much healthier looking hair.

And even though Kean acted like he was riding a wild bronco--

he looks much, much, much better-- say goodbye to what seriously 

was looking like a mullet!  Thank heavens and good riddance!

Back In the Swing of Things....

Kean slept moderately well and woke up just like his good ol' self.

In fact, you'd never know he gave us such a scare yesterday.

I talked to his little therapy school and they said to bring him on in.

His physical therapist had borrowed this new ($900) contraption

that is designed to get him sitting up right and off his back.

I doubt you've noticed but Kean has several pressure sores on the

back of his head from rolling around so much and preferring to stay on his back.

Evidently, he motored around all morning on the chair-- but when Greer and I 

went to pick him up, he was done!

Greer stayed home from the snowmobile trip with Byron

because her best friend in the world, Eliza was back in town.

Eliza and her family moved to California last summer and

since they were in town for a short trip, the girls all got together

for a "ladies luncheon".

I'm told there were lots of tears when it came time to say goodbye again.

 Byron and the other two girls made it home safe and sound tonight.

I guess they had a grand time and Holland is quite the demon on the snowmobile.

 On their way home from McCall, they got to see a number of ice sculptures,

including this giant cup cake.

Oh, and thanks to Lindsay Pennington who

came by with the sweetest note and two plates of cookies.

That made even Kean feel much more hopeful about all this craziness going on.

Kean OK

I guess one day of feeling better was supposed to be enough.

'Cause we sure had another rough one today.

Just like last Sunday, Kean did not wake up this morning.

(He's usually the first one up).

When I went to get him up, he was drenched in sweat and completely

comatose again.

This is what he looked like after we brought him downstairs and changed his diaper!

(Shaved another five years off my life today-- it's adding up)!

 This time they had us take him downtown to the E.R. for testing.

Poor guy was like this-- lethargic, listless and completely out of it

for the first 5 or 6 hours.

They kept interrupting his sleep to take blood twice, give him fluids,

X-ray his chest and catheterize him TWO TIMES to try and get urine!!!

Are all hospitals torture chambers?

 Here's the scoop.  Or the suspicion.  They think he has either suffered a seizure

and they are sending us to a Pediatric Neurologist (yippee, just what I was hoping for--

another doctor to add to our stable) or that he is fighting a virus.

His blood counts are good but he showed a couple of blips that make the doc

think these two things might be the culprit.  This is the fourth time in five months that he's had one 

of these episodes.

Thankfully, after perking up and eating two whole orange Popsicles,

they let us go home after our seven hour little jaunt!

 The girls were all so excited to see their little brother come home happy and back in form.

Reese told me she was so scared that she had written Kean on her hand.

When she heard he was coming home, she went back and added "OK".

Byron took Holland and Reese to our friend's cabin in McCall

for an overnight getaway.  The plan was for all of us to go and take a much 

needed break.

Oh well.  Another time.  Another day.

Pyros

Okay, I'm feeling much better today-- ready to keep moving forward.

I really do have much to be grateful for.  Kean is doing well, the girls are

all healthy and we have a warm, wonderful home where we can all be together.

Who needs much more than that?

The rain finally stopped this afternoon (maybe that helped improve my mood)

and it was so nice, Byron built the girls a fire in the outdoor fireplace.

 Kean wanted nothing to do with the fire-- but

the girls are a different story.

They'll spend hours out there- telling stories, poking the embers

and making s'mores.

p.s. I don't think I've taken a single picture of Reese in the past

year where she's not doing some funky wannabe model pose.

Sigh....

Dump

Okay, I am a total emotional train wreck tonight.

I think I stayed up too late last night consoling Holland over Gage's passing.

She was a mess.  (It must run in the family).

You know, when I was her age, the only deaths I had dealt with was my dog dying

and my third grade teacher (who passed away from Leukemia).

I look at all the little friends we have lost or are losing and I ache for her.

When you have a child with cancer, you meet so many other families in the same shoes.

Let me put it this way, our prayer list is way too long.

And Holland has such a tender heart.

And then there is poor Reese.

She has had a loose tooth for several days and has nursed it along so she could 

pull it out on Thursday and have the Tooth Fairy come on Valentine's Day.

Well, guess who forgot?

Epic fail!!!

Kean had his big appointment with the Pediatric Urologist.

He is scheduled for surgery on March 6th to bring down (and keep down)

his testicles.

If his testicles stay ascended, he is at a high risk for Testicular cancer.

And to add insult to injury, the kind of cancer he has likes to hide out in the

testicles and brain-- so we can't take a chance and leave them there.

You'd be proud of me, I was so calm, cool and collected in the doctor's office

that she even made a comment about it.

My dear friend, Michelle Tiegs came along for support today.

She is a rock and I think that rubbed off on me....

 that is, until I got home and alone and then I got mad.

I just had this overwhelming heaviness today-- wondering why

Kean has to go through so very much!

I didn't have too much time to feel all that sorry for him (and myself)

because I had to pick Holland and her friend Cadee up early from school.

They have to do a service project for a class and decided to make

Valentine's cookies and take them down to the kids in the cancer unit at the hospital.

One of Kean's nurses told us we could-- but we found out we really couldn't give

out cookies to the kids.  So we punted and gave them to all the doctors and nurses

who do so much for Kean and his friends.

While we were up in the Pediatric Cancer Unit, we ran into

some of our closest friends-- and found that their 12 year-old son

was admitted back into the hospital today. 

The brain cancer he has been fighting has moved to his spine.

It was heartbreaking.  The mom looked shell shocked, the son was so angry.

And I'm just sad and mad for both of them.

And then on top of that... feeling guilty for being angry that Kean has to have another surgery.

How petty, when we could be losing him.

Have I told you lately how much I HATE cancer?

Argghhh!

 We had one extra plate of cookies so took them down to my old stomping grounds- the Antepartum 

Unit where I spent 75 days on bed rest during Kean's pregnancy.

We lucked out and my all time favorite nurse, Liz was on...

so that made a rather lousy day a much better one.

Tomorrow has to be easier, right?

The Very Bitter and the Sweet

We're pretty emotional and somber over here.

We got news today that one of our cancer buddies passed away--

10 year-old, Gage Driskoll.

We had him on stage in September for Baldapalooza--

he charmed and won the hearts of several of our artists

who ended up serenading him.

Here he is with half of the duo, Midas Whale.

 And here's Gage and his family with singer, Amy Whitcomb.

 Even then, we knew his time with us was limited.  He had thousands

of tumors in his brain and up and down his spine.  None of the experimental

treatments he's been trying during the last few months worked against the cancer.

It just makes me sad.  I feel for his family -- how do you begin to understand

why some children survive and some don't.  

I guess those of us who have children who are surviving feel a twinge of guilt.

Do you think that is normal?

On a somewhat brighter note, we got to go and visit our dear friend Chelsea.

She worked last summer with Kean-- you'll probably remember her.

We love her and consider her part of the family.

She's been having horrific headaches for months and months and just

got home from having surgery on her occipital nerve.

The girls made her a "candy get well card" to cheer her up.

 And lookey at what her mom, Calene made for the girls-- the cutest

knit hats ever.

There sure is a lot of love out there.

One Small Step... One Giant Leap

Hold onto your seats...

guess what Kean did today?

Took a few steps on his own and lucky me, I got it on camera!

Okay, lets hope the dam has now broken and he will take off in 

the walking department.

We did therapy down at our neighbors, the Bodily's --

we figured Kean needed a change of scenery to get motivated

and since it has rained non stop and the snow is now all water--

our place is a mud hole. 

But that is all out shined by the fact our boy took a few steps!

Yeehah!

Mugging for the Camera

Whew, we had a busy day.
Kean had therapy first off- -- speech and did moderately well
(if you don't count him throwing items).  Sigh....
Then he went to hang with Grammy while I had a big meeting
for Baldapalooza and Camp Rainbow Gold.
Our music options are ever widening and that's exciting.
I'll let you know as soon as we have our headliner booked.
I also found out I'll be speaking at Camp Rainbow Gold's big
fundraiser:  Share Your Heart Ball in Sun Valley
at the beginning of March.
Just pray I can make it through the speech without getting
too emotional.  
If you'd like a glimpse into a tiny bit of what Camp Rainbow Gold
does for cancer kids, cancer siblings and cancer families you can
watch this short video.
I think you'll especially enjoy the first clip in that it is Reese mugging for the camera.
Holland is in there too... later on dancing.
http://vimeo.com/85624903

Rosy Cheeks

We've had quite the freaky weather around here....

bitter cold one day, snowing like crazy the next

and today was foggy, foggy.

The girls sure made the most of the several inches of snow that dumped on us over the weekend.

Byron took Greer and her friend, Celeste....

 and Reese and her much taller friend (heck, they all are) Vivian

out snowmobiling in the cow pasture.

 Holland and her friend Cadee were stuck inside making sugar cookies.

For one of their classes at school they have to do a four hour service project.

They've decided to make Valentine's cookies and take them down

to the children who are stuck in the hospital with cancer.

Pretty sweet, eh?

They'll finish them later this week and deliver them on V-day.

If you are keeping track of Kean-- he was much, much better today.

In fact, he was great.

No crazy episodes where he imitated e a corpse.

He had his little therapy/school today and greeted each of his

therapists and the one other kid in his class with a big

"Hi".

Loved it!