January 27, 2005
Hello from Avalon!
Sent: Thursday, January 27, 2005 1:01 PM
Subject: Hello from Avalon!


Hello, my friends!  Long time no pester...

OK, first of all...I'm sorry.  Yes, color me tardy...I've been perfectly rotten about keeping
everyone updated this past month ( as several of you have reminded me!)  I wish I could give
you a grand list of reasons, like a cruise or a visit with royalty.  Nope, just plain old life got a bit
busy.

Since I've been such a schmuck, I'll have to back track a bit to catch you all up.  I'm sure you
remember us dancing in the streets way back on December 22, when Avalon's ANC topped
out at a whopping 16,000.  Something else incredible happened then, we switched to
bi-weekly visits to the clinic - rather than having to go once a week.  The bi-weekly schedule is
for this phase of the chemo - which lasts for 8 weeks.  

The super-high ANC and previous "weeks off" from chemo made for one fabulous holiday
season.  Avalon did, indeed, get her Vincristine infusion and restart her oral chemo - but she
handled that round of it quite well.  She had such a wealth of all blood cells - that she was
spared several of the nasty side affects for that particular round.

Of course, we were one of the 330,000 central Ohio families that lost power.  I mean, really,
did you ever have a doubt?  Not to mention that one of our dogs passed away suddenly the
week of Christmas.  But those two events aside...we had an incredible holiday.  Friends, family
and complete strangers (whom we now consider family members) spoiled the girls rotten.  I
haven't figured out how on earth I'm going to explain to the crew next year that Santa really
doesn't normally bring that much!  

Avalon enjoyed every second of the holiday season.  She hugged stuffies, played Pretty
Ponies and giggled at Weebles for endless hours.  Because of having so much time off of
chemo, she had energy coming out of her ears!  Therefore, she also battled with Ambrosia
(because, duh, every toy is supposed to be hers...), tried to carry cats around by their necks,
and learned to lead Prince (the lab puppy) around by his lip (yes, you read that right).  In
other words, she was - for a few weeks - a perfectly normal 20 month old.  It was pure bliss....

January 6th was her first return to the clinic since before Christmas.  Basically, I didn't think to
update anyone, because it was entirely uneventful.  The visit was just for blood work and a
physical - and everything was peachy.  Sure enough, her ANC had dropped remarkably - from
16,000 to 1792 - but that was to be expected.  Actually, her other values all remained very
good - so we had another peaceful two weeks.  That helped tremendously since Aurora's big
winter show with Kids of Broadway was on January 14th.  Avalon and Nick didn't get to attend,
but at least we weren't worried about Aurora spending so much time at dress rehersals and
the performances.

Moving forward, January 20 was Avalon's most recent date with the devil.  On the 20th,
Avalon began the second "4 weeks" of this treatment phase.  She had a spinal tap, received
spinal chemo, and an infusion of Vincristine (chemo) in her port.  Just like every other
Vincristine infusion, she then spent the next 5 days on steroids (twice a day) - Vincristine and
steroids go hand in hand.  One of her oral chemos is once a week, the other is daily.  She
does the once a week on Thursdays - so, yep, she had her dose of that in the evening, as
well as the steroids, daily chemo, Zantac and stool softener.  Whew!  What a load!!

First, the good news.  Shockingly, Avalon's ANC was a whopping 1776.  You could have
knocked the nurse and I down with a feather!  After falling from 16,000 to 1792 in two
weeks...we figured she'd be at zero by the 20th.  What a lovely shock!  According to our nurse
practitioner, Diane, sometimes kids can develop a bit more tolerance to the 6MP over time.  
Nick and I were very dubious about restarting the 6MP, we figured we'd just drop right back to
square 0.  Apparantly, Diane is as brilliant as we thought - and Avalon adapted.  Go Avalon!!  
Other blood values did decrease (as expected), but nothing was earth shattering - just normal
bleck.  Again I say...Go Avalon!!

I wish I could say it was all good news.  This particular round was rather rough going for her.  
She spent more than 12 hours wailing on Friday.  I swear I think Aurora, Ambrosia and I would
have tried to alter the earth's rotation, if we thought it would have helped her.  I give them
enormous credit for not "losing it" and doing their best to help.  The balance issues and
general aches and fatigue seem to have been exaggerated this time, although I have not one
clue as to why.  The steroids also rob her of sleep - she gets up 12 + times a night, and never
truly settles in.  The trade off is, they also make her eat like crazy, which is very helpful in
keeping weight on.  For some unknown reason, they didn't do that this time.  Yes, I never got
more than 20 minutes of sleep for several nights - but her hunger strike only worsened
instead of abating.  Fooey on the stupid drugs!  This kid was dinky to begin with, she keeps
this up she'll be transparent before its all over.

According to Diane, we are doing OK, by their standards, in the weight department.  Avalon is
currently 21 months old, 30 1/2" tall and weighs in at a chart "bottoming" 21 pounds.  (whoo
hoo- I can't hardly pick her up...)  The clinic is thrilled that she is still above her diagnosis
weight - even though she has lost some ground recently.  Personally, I'm a bit freaked out, but
I trust Diane's enthusiasm.  Basically, the rule is - feed her when she wants, what she wants,
as much as she wants...just get calories in.  I feel like I've earned a bust in the "Loser Mom"
display case every time I give her barbque potato chips for breakfast.  But hey, who am I to
fight "progress"?  

Overall, the past several days have been challenging.  Avalon is exhausted, sore, and
frustrated at life.  She'll climb on my lap to lounge for a while - then yell at me for holding her
and demand to get down.  That lasts for 3 minutes and she's demanding to be back up, where
she fidgets and complains some more.  At this point, rewind to step one, and repeat...three to
four hundred times a day.  Add in, the begging for food at the refridgerator (followed by
throwing it violently off the high chair), the wicked temper and the random attacks on resident
fur-bearing creatures...and its been a "fun" week.  All of that being said though, there have
been wonderful moments.  And truly, the madness is decreasing rapidly now that the steroids
are done.  So all should be as "normal" as our life ever gets, by the weekend.  

I've attached a couple of recent photos for you.  Believe it or not, I had no clue how much hair
she's really lost, until I saw these pictures.  We always leave her hair down and wild, so she
normally has a bit of an all-over comb-over.  However, when she asked for "pitty pitty"
(translation, "pretty, pretty") and brought me a hair brush and bow a few days ago; I admit, I
couldn't resist.  Her worst phase of chemo starts Feb 17th - so her days of having a single
hair are truly numbered.  I figured I'd better "pitty pitty" her, while it still didn't require tape.  

You'll see that Prince has increased in mass by a bit.  What he lacks in brains (and believe
me, its substantial), he makes up for with heart.  He lets Avalon lead him around by his lip, lay
on him and put bones in and out of his mouth, with never a complaint.  In fact, he adores her!  
Once again, the universe has graced us with an animal with a gentle soul - and I am grateful.  
No matter how rotten she feels, he never fails to make her grin.  "Pins" is one of her favorite
things on earth.  In spite of himself, he's becoming one of mine too. ;-)

Well, there you go - the good, the bad and the cute.  I hold my hand up and swear on a stack
of diapers to be more timely with these updates.  If all of you are willing to read them, I should
definitely be willing to sacrifice the sleep necessary to accomplish them!  (this one started at
5:30 am this morning)  Again, I wish to tell each and every one of you how much we
appreciate you.  Your positive energy is moving her forward and keeping her healthy.  And
each of you have wings you just never knew about.  

We love you!!!
Alicia, Nick, Aurora, Ambroisa, and Avalon.
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