March 21, 2005
Avalon update and pictures
Sent:  March 21, 2005
Subject:  Avalon update and pictures

Hello friends!  Are you sick of me yet?  Actually, if you
are...please tell us.  We're in this for 2 1/2 years, but you all
don't have to serve the same sentence.  You are free to parole
whenever you're sick of us!

Attached are pictures of my little baldy.  The crown and earrings
were early Easter gifts from her papas.  She'll wear them for
hours, constantly wiggling her head to feel the earrings
jingle-jangle.  She thinks she's fabulous in them and can't get
enough of herself in mirrors!  Too funny.

Several of the pictures are of the infamous Build A Bear Elmo
I've written you about.  How cute is he?  She loves to listen to
his heart and take his temperature.  She often sticks the syringe
down his shirt and gives his "tubie" a "drink".  Sometimes, he
"doctors" other animals.  But frankly, she likes to play nurse the
most.  I love the giggle picture.  She's really just that amused
with herself.

The pictures of bunny ears are from today.  Avalon had a clinic
appointment for bloodwork and to be de-accessed.  Since it was
a short day, Ambrosia and Aurora came with us to help distract
her.  Ambrosia loves the bunny ears too.  Aurora, of course,
was way too sophisticated for them.  They "didn't match" her
outfit.  Heaven help me, teen fashion angst is looming
frighteningly near...

First things first, let's cover the blood work.  From a series of
pathetic ANC's below 100 last week, she rocketed to an
impressive 4094 today.  Amazing what that little body can do!   
The score means she will, indeed, start the next phase of
chemo on Thursday.  This will be two weeks of non-stop
horrifying drugs.  NIck and I are walking an odd line between
being scared of what's to come, and thrilled that we're about to
get it over with.  These are the days that I'm glad; she's
clueless.  She gets two more days of halcyon bliss, while we
sweat out 1000 good and bad scenarios.  Basically, the
universe will have its way, regardless.  We just have to be good
little scouts and "be prepared".  'Nough said.

This morning also brought the end of the IV drugs at home.  
Halle-stinkin'-lujah!  I will admit that the sage advice offered by
some friends in-the-know, was true.  It really did all get easier
about the 8th or 9th dose.  Somewhere in there you...adjust.  Its
kind of like our life since diagnosis.  You go on through the
paces, doing what needs to be done.  Only periodically, do you
realize what a weird place you're really in.  A few times I found
myself "stepping back" from what I was doing, and marveling at
the fact that I was actually pushing drugs into my daughter's
main artery.  Not crying, not grossing out, just marveling at the
fact that I wasn't doing either of the other options.  I can't quite
put my finger on it.  I know it sounds horrid to all of you, but
really...when you're in it, you don't have the time to dwell on that
part of it.  You just do it, and then move on.  Someday, maybe,
I'll be better able to verbalize this odd time and space warp
we're in.

For now, its late, and this old lady is "low in the poots", as my
grandmother would have said.  You know you're in serious need
of sleep when you find yourself wistfully contemplating mattress

I hope you find my tiny, little, cross-dressing Yule Brenner as
cute as I do.  I am here to tell you, that oddly shaped melon is
the softest thing you'll ever smooch!  It must be tickly, she grins
and squinches every time we kiss on her.  And I'm here to
report, that yes, pasta clean-up is significantly faster!  Here's
wishing you a smile, a laugh, and a warm hug...the ingrediants
for a perfect day...

Love to ALL of you!!!
Alicia, NIck, Aurora, Ambrosia, and Avalon
Our Journey:
Avalon's Army of Angels