May 19, 2005
Avalon Updates...Part 3
Avalon's Birthday Party...finally!
...When last we met, we were discussing Avalon's May 5th clinic visit and
the following weekend...

We are approaching current time...

Before I finish catching you up, I have a confession.  After taking some
well-deserved ribbing last night about my tardiness, I've decided to "come
clean" with all of you.  Hmmm, how to address this...  Alright, I'll just out
with it.  

Why have I been so stinking late with these updates?  I had a home
health care nurse coming to our house every day of the week!  Think
about it...ponder it...yep, you got it!  It was like having company 7 days a
week. My sister is a senior social worker who daily visits people's homes,
and she swears she doesn't pay attention to her client's housekeeping
skills.  Here's the thing, though.  I totally believe that my sister can ask
mice to move over, and only slightly cringe as roaches crunch under her
penny loafers...but I don't quite accept that all home health care workers
are that blind.  

Our nurses were fabulous, and while I am not vexed by random vermin
inhabiting my domicile...I am vexed by piles.  Piles of toys, piles of
laundry, piles of toys, piles of mail, piles of toys, piles of shoes, piles of
toys...well, you get the picture.  To me, these lovely ladies were the
epitome of company...thereby requiring copious amounts of "company
cleaning".  Seriously folks, "company clean" for that many days in a a small house with 3 kids...  Face it, it was darn near a Herculean
effort!    So there you have it...the blatant, ugly truth.  I wasn't remiss in
my updates because I forgot you...I was bogged down by the utter chaos
that is our house!  Ahhhh...feels good to have that off my conscience.

Moving on...  Monday the 9th ended up being a very exciting day.  As
Rebecca (the home health care nurse) and I opened Avalon's dressing,
we were both shocked at how beautiful it looked!  Avalon had apparantly
had an amazing growth spurt in her healing.  Rebecca felt we were
probably able to quit packing, but she had to get the surgeon's approval.  
So we packed Avalon one last time, and Rebecca promised to call the
surgeon's nurse that afternoon.  Yee ha!  We knew the end of torture was
in sight.  

Sure enough, Rebecca arrived with a huge grin Tuesday morning.  She
brought approval from the surgeon and new dressing supplies from the
pharmacy.  All we do now is remove the dressing, squirt a cleaner in the
wound, squeeze gel antibiotic ointment in the wound, and recover it with
guaze and medical tape.  The whole procedure takes only a few minutes,
and Avalon can verbally describe her way through it.  The worst part is
removing the tape, her skin is raw all around the wound.  We had to say
goodbye to Rebecca on Tuesday after she taught me the process.  This
is far too easy to eat up a nurse's time.

Wednesday the 18th was blissfully uneventful.  The only thing of
importance is that it represents what is going to be a daily battle for the
next few months..."Go
ow-side!"  As with any two year old...the call of the
swing is deafening.  Unlike any normal two year old..."ow-side" is kind of
forbidden territory for Avalon.  Even looking past the baldy thing, the
chemo drugs make these guys overly sensitive to sun.  One attending
told me he'd prefer she not be out at all during peak hours (10 - 3).  If she
has to be out, she must have a hat, sunblock, preferably only under
shade, and only for a few minutes.  You try and translate that to "fun" to a
two year old patient and her 3 (soon to be 4) year old sister.  If you do,
please clue me in...I'm in for the war of the century...

Thursday the 19th brought us back to clinic.  Technically, this was
supposed to be an "off" week, but they are keeping an especially close
watch on Avalon at the moment.  Besides, her PICC dressing needed
changing anyway.  It was actually a pretty fast clinic day, compared to
most.  We were in and out in under 4 hours...come to think of it, its
shocking to think that's "fast".

Avalon's regular access nurse, Jackie, came walking through the waiting
room soon after we got there.  Avalon saw her and started crying and
saying, "Owie..owie..".  Jackie nearly cried.  Jackie then went on to recruit
a different nurse for the PICC line and finger stick - she refused to be
responsible for another "owie" day.  She kept telling the other nurses that
it broke her heart that Avalon saw her as an owie. can I help
but love these people?

The good news was that Avalon's numbers were stellar...her ANC was
2050!  Comparing that to her 45's and 100's of last Christmas...and we're
in the clouds.  Compared to a normal kid of 13,000 - 15,000 - we're still
"sick", but hey, its all a matter of perspective...

The bad news was that Avalon lost weight...nearly 1/2 a pound.  Rats!  
Apparantly we can't ever get 100% good news.  Althought the weight loss
issue lead to a funny for the day.  As Diane (our nurse practitioner) and I
were discussing ways of plumping up Avalon's calorie counts, the topic of
ice cream came up.  At that point Avalon began shrieking (at the top of
her ever-lovin' lungs...) ""
Ice - ceam!  Ice -ceam!"   Apparantly, Diane
struck a chord.

Here's the problem.  Avalon doesn't necessarily distinguish between the
Heme-Onc floor and the outpatient clinic.  They're both in the same
"place", we park in the same spot, they have a lot of the same people in
them...  The rub on this particular day, is that they don't stock the same
food.  If you're in-house and you get a hankering for "ice ceam", all you
have to do is walk down the hall to the patient refridgerator...not so much
the case in the clinic.  Avalon's hankering required a full out trip to an ice
cream proprietor.  Ask me if she understood the difference...  

The end result was a 21 pound twirpy little baldy, screaming,
" like her very life depended on it.  To make sure we didn't forget,
she was sure to yell in the general direction of any other adult she
spied...all the way to the car.  As the Heme-Onc staff giggled...I had
rather unpleasant homicidal thoughts directed their way...

My favorite part was on the way to the actual frozen confection provider.  
We're in the car, cruising down the highway, and Avalon starts to fall
asleep.  Picture a typical little kid scenario - where their heads droop, and
they startle themselves back upright a few times.  Except in our story,
every time Avalon would startle back awake, she'd scream, "Ice Ceam!"
before she'd slump back over.  Unless we wanted to permanently
surrender our hearing and our sanity, we had to give up and go for the
cream.  Oh jeez, hurt Aurora and Ambrosia's feelings...they got ice cream
for lunch.  Chalk it up as another red mark in my parenting book.  I keep
up at this pace, and the universe will revoke my mom pass.

The rest of Thursday and Friday were spent cleaning the house (again!)
getting ready for Avalon's long late birthday party.  She finally got to have
her cake and "ice ceam" and presents and Elmo wonderland.  Grammo,
Pappo, Nettie, Darby, Marnita, Kevin, Jeannie, and Travis, joined Nick,
Aurora, Ambrosia,and I in a rip-roarin', face-stuffin', laugh-riot lot of good
birthday  cheer.  Thank you, rain, we all had to pack into our little family
room, but I don't think it "dampened" the party spirit one whit.  Good thing
we like each other, we didn't have enough room to change our minds -
much less our positions.  

Avalon wore a sparkly princess gown, tiara and sparkle shoes.  She
Elmo-ed her way through the day, and literally took until the next day to
finish opening presents.  She simply had way too much fun with each new
thing, to be bothered with opening something else.  Another lesson we all
could learn from...  Why always look for newer and better?  See each little
gift as a huge, wondrous entity - and fully appreciate it in every respect,
without a need to seek something more or something better.  How much
richer our lives would be if we could follow the wisdom of a two year old...

I'll load birthday pictures with this email when I post it to the website.  Give
me a wee bit of time - I'm trying!

Sunday brought about my make-up Mother's Day.  They outdid
themselves this time.  I got breakfast in bed, and a leisurely day of doing
exactly nothing.  It was bliss!  I never got out of my pajamas, I never
cleaned a thing, heck - I never even put on a bra!  How's that for sheer
decadence?  Ahhhh - I believe my mental health regained a bit of
strength that day...  Surprising how much more benevolent you feel
toward your offspring (and husband) when they actually take the time to
recognize you as the Lord-high queen house mistress that you are.  A
couple of more rounds of pampering and I may actually start washing
their skivvies again...

On that note, I'll leave you all to your daily grind.  Shockingly, you'll
probably be hearing from me again in a few hours.  Avalon is at clinic with
Daddy as I type this. Hopefully, I'll be able to update you tonight.  I'm
vowing to not get so far behind again, it hurts to have to think this much.  

Hug each other, hug your neighbor, hug your kids, and if you're
completely desperate...hug your long as he remembered
Mother's Day!

Love to ALL of you!!
Alicia, Nick, Aurora, Ambrosia, and
How's this for fancy party
duds?  It was a thrift store
find years ago...and Avalon
loves it!
Grammo cut Sesame Street
faces out of wrapping paper
and glued them onto this gift
bag.  Avalon insisted on
removing them, and pasting
them onto her head..very
serious work, you know...
Pretty, pretty princess.
Ooohh, a Build A Bear favorite!
Presents are So Much Fun!!
What's in here?
I did it, first try!
Ice ceam!!!!!
Our Journey:
Avalon's Army of Angels