June 17, 2005
Avalon update
Oh a snooting we will go, a snooting we will go...Heigh ho the cherry-oh, a snooting we will go...

Yep, we're still pretty ookie around here.  Nick and Ambrosia lucked out and only came down
with the mildest of symptoms.  Avalon is coughing like its her job...and I'm, generally speaking,
trying to croak.  Aurora, the twit, has skated through clean as a whistle.  First time for
everything, I suppose.

I'm not too cheesed at being sick.  This is my first round since Avalon was diagnosed.  The
rest of the clan have passed several nasty things among them - and I've steered clear.  
Frankly, it was my turn to suffer.  However, did it have to hit when I have to go speak at a
charity function?  I mean c'mon...talking like I have a clothespin on my nose is bad
enough...but add in the chapped lips, rudolph nose and hacking cough...Oh I'll just be the
picture of beauty this evening...  Worse - I won't be able to taste any of the food!  How rotten
is that?!

Avalon is currently feeling anything but stellar.  Thankfully, the cold is progressing through
her relatively quickly.  But yesterday was a giant chemo day - and she's feeling it today.  She
had a week off from chemo, for her body to prepare itself for the next phase.  The good news
is that she recovered beautifully - her ANC was over 4000 yesterday!  The bad news is, that
in addition to her cold, she now has the full affects of spinal chemo, IV chemo, steroids, and
two oral chemos taking her down for the count.

Yes, you read that right...a new phase of chemo.  Yesterday was the beginning of the final
chapter - Maintenance..  Mind you, Maintenance is 18 months long...but at least we can say
we've made it to the final phase.  

Maintenance is nearly identical to Interim Maintenance.  She takes oral chemo (6 MP) daily.  
She still gets IV Vincristine once a month - paired with steroids, twice a day for five days.  She
will still get oral Methotrexate (another chemo agent) once a week.  The changes are that she
only has to have spinal taps and spinal chemo once every 12 weeks instead of every 4.  
Wahoo!  Also, she will no longer have oral Methotrexate on the day she gets a spinal.  That
change is small - but the spinal tap change is huge!  

Yesterday's spinal tap was awful.  Avalon fought terribly, and was very difficult to restrain
during the procedure.  This was her last chance.  From now on - she will have to have her
taps in the OR, fully sedated.  It makes for a much longer day - and of course has the same
inherent risks as with any sedation.  However, the risk of injury to her spinal cord is just too
great with how much she has been squirming.  The nurse practioner has tried every available
alternative - and they just aren't working.  Thankfully, we will only have to do it once every 3
months now.  We're grateful for that, and will take each hurdle as it comes.

As with any Vincristine infusion, the next few days will see Avalon falling more, dropping
things, and being generally frustrated.  She'll also start chewing on her fingers and toes
again, and gnawing on furniture.  You have to love the odd side affects of chemo.  But you
know what?  She's still here to have side affects - that's all we care!  

All the way around, its going to be an interesting day.  Avalon is fighting the chemical demons
coursing through her body, I'm fighting the green goo and chapped skin threatening to take
me over, and Nick is fighting the stress of two whiny sickies, 1 rambunctious toddler, and a
slew of electricians and HVAC people working to give us central air.  My oh my - what a
wonderful life!  Talk to me in a few days...if my nose hasn't fallen off, I may have a humorous
tale or two to share...

Love to ALL of you!!
Alicia, Nick, Aurora, Ambrosia, and

PS:  I've lost 10 1/2 pounds so far!
Our Journey:
Avalon's Army of Angels