Avalon's Army of Angels
July 18, 2008
First day on T-3
Check out those freckles!
Subject:  July 18, 2008

It was great to wake up on T-3.  Better yet, it was
GREAT to be
waking up from sleep!  Ahhhhh...
You know its been bad when you consider the
Chinese- Torture-Devices they call "pull out beds"

Best of all, it was Friday.  Friday is a Cecil-day on
T-3.  Cecil is a godsend in PCA (nurses' aide) form.  
Cecil not only physically resembles a great aunt I
adored in my childhood, she also happens to be the
most important person on T-3.  She's my Coffee

Do not underestimate the power of the Coffee Fairy.  
For those of you who do not have the caffeine
monkey on your back...well, you just skip ahead a bit.
 For the rest of you, welcome to my Hell.  
Imagine....giant whompin' gorilla-sized primate
whacking your noggin', with no relief in site.  Then
waaa-aaahhhhhhh (think angels singing in 12 part
harmony)...Cecil enters.  I'm telling you, she comes
bathed in a heavenly glow.

From the first time she heard I was a fellow addict,
Cecil has taken good care of me.  As soon as she
gets the word that I'm awake, she brings me a hot
cup of Love.  And folks, she does this even when
she's not our PCA!!  And it only gets better.  She
waits until she's finished her first cup, then knows its
time.  With no asking/questioning/pleading, this lovely
sainted woman comes back with cup
#2! I'm telling
you,  I would personally canonize her, if I could.  This
may seem small to the non-addict.  But the rest of
you, please raise a cup of black beauty in her honor,
and make a toast to a woman of the ages!

Avalon spent most of Friday in a pain/morphine
stupor.  While the pics look pretty friendly, the truth
is, most of the day was spent quietly zoned out,
staring at the TV.  She kind of "retreats" into herself,
choosing to lose herself in cartoons.  I think its a way
to fly out of her own body and live somewhere else
for a while.  

Getting Avalon to eat anything Friday was like pulling
teeth.  She would ask for things, take 3 bites, and
argue vehemently that she was full.  Such is the path
of the "stopped up" sweetie.  When not-so-much is
"exiting" the system, there is very little room to put
more in.  

We had a lovely day of visits, though.  After 24 hours
in complete isolation, I was thrilled to see non-staff
faces, even if Avalon summarily ignored them.  Two
fantastic friends from Heme-Onc clinic came to visit
her, PCA's Liz and Ryan.  If you remember from long,
long ago...Ryan has been a secret love of Avalon's
from the beginning.  This adorable young man spent
more than a year working tirelessly to get Avalon to
talk to him.  She went through a long phase of only
speaking to Ryan when she thought he couldn't hear
her.  She'd wait until he walked around a corner, then
quietly say, "Hi Ryan," or "I love you, Ryan."  What
she never knew was, once he figured it out, he would
go around the corner and stop - waiting to hear her.  
Any wonder why I'm crazy about him?

Liz was a PCA on J-5 when Avalon spent so many
months in and out of there.  Liz could get Avalon to
go along with anything.  She has the magical
big-sissy-who's-totally-cool thing going.  Liz is the
one who taught 24 mo old Avalon that if she pushed
the buttons on the bed, she could make it into her
own personal slide.  Avalon would shimmy her little
tuckus up to the top of the bed and "Wheee!" down.  
Again, how can you help but love someone for that?!  

Liz and Ryan came to see Avalon on their lunch
break.  Truthfully, she was far less than friendly.  
Well, foo  on her, I  had a blast!  The two of them had
me laughing so hard, its a good thing the hospital
doesn't have behavior policies for parents.  Had we
been in a restaurant, I'm quite sure I would have
gotten myself kicked out.  Again, it was a couple of
employees to the rescue of my mental health.  I'd
spent the morning in a pretty bad place.  I had
experienced one of those
breakdowns.  Enter Liz and Ryan...toss in several
hearty guffaws...and I was able to go on with the day
in a much better space.  Folks, there really is no
substitute for a good chortle.  

Liz and Ryan passed our friends Lisa and Christina,
as they were coming up to visit.  Thanks to the new,
TOTALLY RETARDED, code system the hospital has
come up with - Lisa and Christina nearly missed
getting to visit.  Basically, you now have to know a
"secret" code to be able to visit a patient.  Its the
most INSANELY STUPID idea I've ever heard of!!!  
They already had visitor restriction policies in place.  
This was nothing more than a
keep-up-with-the-Jones decision that was voted on
by people who have obviously
never had a child as a
patient there.  

Frequent flyers (children who are served by multiple
depts and who spend a great deal of time at the
hospital) are all as disgusted by the policy as I am.  It
sounds easy, call up to the room and ask for the
code.  Well A) - that creates a bottle-neck at the
visitor desk.  B) 80% of the time I can't get to the
stupid phone!  I'm talking  to a nurse, fixing a pump,
feeding a little one, helping her go potty, or maybe,
just maybe - taking her on a walk.  
AAAACCCKKKKK!!  The policy does nothing but
cheat kids out of visitors.  I hate it.  Oh, and by the
way...my code is and always will be, "I HATE CODE!".
 So much for "secret".  Stick that in your collective
pipe and smoke it, hospital gurus!

OK, OK, coming down off my caffeine-fueled
soapbox...  Time to get back to Lisa and Christina.  L
& C are long time friends from Heme-Onc clinic.  We
began chatting in clinic several years ago, and have
become good friends.  Christina is a Ewing's sarcoma
survivor, who was partially paralyzed from a chemo
drug interacting with a muscle condition she has.  
Christina is a teenager who has been to Hades and
back - and yet, she's one of the most positive, loving,
kind-hearted people I've ever met.  Even bald and
frail, her smile was enough to light up a room.  She
and her mom are always a welcome sight.

L & C spoiled Avalon rotten.  They brought her
coloring books, new sparkly pajamas, and
too-cool-for-words Hannah Montana panties!  I mean,
really folks, does it get any better than Hannah
Montana britches?  Not when you're 5, it doesn't!  
None-the-less, Avalon still wasn't the friendliest of
hostesses.  In all fairness though, the swelling in her
head was messing with her hearing and sinuses.  
She sounded like she had a terrible cold.  And there
is no doubt about her ears being full.  She pretty
much shouted anything she did say.  So, while she
bragged about her loot non-stop later, she really
wasn't the best recipient at the time.  Thankfully, Lisa
and Christina know her well enough, and love her
enough to look past her social faux pax.  
Believe me, I am grateful.

Later that night, she got the best visitors of
all....sissies.  While my mom had been in town on
sibling duty, she had been doing it without a car.  So,
Friday night was the first time Grammo, Pappo, and
siblings got to see Miss Avalon.  If you  want to make
a sick kid grin like a monkey on Banana smoothies -
send in the sissies!!!!  One sissy grin is worth at least
a couple of dozen morphine doses.  
It didn't take too long before Avalon was demanding
a "fishie hunt".  The 6th, 5th, and 4th floor lobbies of
the patient tower all have giant fish tanks.  5th floor
has a bonus tank on J-5, where Mrs. Puff, the puffer
fish, lives.  Avalon's favorite exercise is to walk to see
fish.  6 and 4 have these giant goldfish, and 5 has
Mollies that perpetually have a zillion babies.  Each
tank and floor have their own charm, so we must
always visit all of them.  We try to get her to walk as
long as she can, but we always take her wheelchair
for the inevitable, "I'm tired."

When you're schlepping Mom, Dad, Grammo, Pappo,
Aurora, Ambrosia, Anam, and Avalon along...we
make quite the spectacle.  Particularly since Avalon
has developed such paranoia.  If anyone gets out of
her sight, she panics.  It translates to us moving as
one large blob, kind of reminiscent of the Mary Tyler
Moore series finale tissue-walk.  And farts on those
of you reading this who are too young to appreciate
my reference.

In all, it was a day of mixed emotions.  I deeply
appreciated the distractions of friends and family.  
Fifteen minutes of laughing can help balance hours
of bad.  On the flip side, this was the day I really
"looked" at Avalon, and saw what we're up against.  
Of course I see her in her hospital bed the whole time
we're in-house.  That's not what I mean.  I  had a
moment on Friday, where I really "saw" the reality.  I
"saw" all the hours and days she's laid in a hospital
bed, or on the couch at home.  I "saw" a frail, swollen
little girl - who just shouldn't be having to do this.  I
"saw" the future...that we'll never be done with a
medical life.  That is, we'll never be a "normal" family
again, not ever.  Did I know all of this before?  Sure.  
But sometimes, a mental picture throws itself into
your face in a new way.  I began the realization on
Friday, that each day we get with Avalon really is a
gift.  We don't have a guarantee.  If anything, we
have more of a guarantee that we are on borrowed
time.  That's a pretty awful epiphany.  

So thank you, universe and the powers-that-be, for
being so incredibly wise as to break up my loathsome
realizations with the laughter and love of friends and
family.  After all, that's how we'll get through whatever
else you have in store for us.  Together...with love.
I love watching Avalon sleep in the hospital.  She's so peaceful when she's
asleep.  Still wondering what's under that dressing...  You can see her IV in her
Right hand.  They taped her arm/hand to a board, to help keep it still, and help
the IV stay viable.  The bandaid on her Right foot is from an IV they removed
when we arrived on T-3.  The white cord you see is a pulse ox monitor.  While
Avalon is on T-3, her oxygen saturation levels, heart beat, and respiration, are
continuously monitored.  She has leads on her chest which attach to a monitor.  
Her temperature and blood pressure are taken at regular intervals.  The
intervals can be adjusted to meet the concerns of the docs.  Also, I's and O's
are recorded.  I's are "ins" - what she takes in, either by IV or by mouth.  O's
are "outs".  We strictly watch how much fluid she produces.  Because Avalon
has slow motility, we are constantly on watch for those precious O's.
Don't you wonder what goes through that little mind?  She's dealt with so
much...I often find myself sad when I look at her.  Sleeping children should only
be peaceful and beautiful...not carrying such heavy burdens.  Still, you have to
laugh at the Dorito mustache she has going on!
Eating ice cream.  This surgery
left her jaw very sore.  Chewing
was a painful chore.  Smushy
foods were king, particularly,
chocolate ice cream.  The bonus
is, ice cream counts as a liquid!  
Its pretty funny calling and
ordering ice cream for
You can see the edge of her
monitor, up by the pink unicorn.  
I love her Happy Toes in this
pic - ice cream for breakfast
really does rock!
You can see the swelling a
bit...it really didn't translate
well in pictures.
Avalon loves a parade!!  She
loves to drag the family off
through the hospital on a "fishy
Avalon is shushing Anam.  Can
you say, "Hello, pot.  Its me,
Kettle."?  The swelling from the
surgery clogged her ears
something fierce.  She spent
several days virtually shouting
at us.
Ambrosia and Avalon.  Better
known as "Fric and Frac".
Fishy discussions...
Little brother was being too
much of a pickle to join in on
family photo time.  And yes,
we have WAY too many
family pics like this!
Interesting side note for today.  This morning, our
house was sold at auction to satisfy the
foreclosure.  Sounds ominous doesn't it?  Nope, I
couldn't care less.  In fact, when it ran across my
mind late in the evening, I found myself hoping
that eventually my home would end up in the
hands of a wonderful family who would
appreciate all the hard work Nick put into it.  Do I
regret renting to people who caused thousands
of dollars in damage and who broke a 3 year
contract in less than one?  Of course!  Do I regret
the list of financial choices we've made putting
Avalon and the children first, with financial
security a distant second?  NO! I don't regret that
list for even a millisecond.  We are still a whole
family, we still have Avalon.  We will always be
home, where ever we are, because we have each
other.  I will never regret money or things we
don't have.  I would only regret losing time with
my children to the pursuit of wealth.   

Financially poor is OK, I'm kid rich!