|December 10, 2004
Quick Avalon Update
Sent: Friday, December 10, 2004 9:12 AM
Subject: quick Avalon update
As you all know from last week, Avalon had an ANC (indicator of how well she can fight
infection) of 0. Well, I thought I would update you from yesterday's chemo visit.
Avalon and I got home from chemo in record time, less than three hours. Problem is, you
can't exactly call it "chemo" when she doesn't actually get any. Her ANC was up to a
whopping 46. Whoopee. They won't restart any chemo until she is at 1000 - so we have a
way to go.
The good news is, she is feeling like a million bucks. With no chemical warfare going on in
her body, she is happy, walking, talking and getting into trouble just like she should be. She
can undecorate a Christmas tree with lightening speed and precision accuracy.
Bad news is, she is still at extreme risk of infection. One of our former in-house hospital
neighbors, Gage, does his chemo on Thursdays too. Gage is 3 months younger than Avalon
and had a Wihlm's (?sp) tumor. After his last round of chemo, (his chemo is IV, every 2
weeks) - his blood counts bottomed out like Avalon and sure enough, he ended up sick and
in the hospital for several days. Thankfully, he's home again and doing fine. Another former
neighbor, Breanna, is Avalon's age and has AML - wasn't so lucky. Her infection left her on a
respirator for a week and a half - they thought they were going to lose her. Same infection,
drastically different results. Germs really are that serious for these guys. Its pretty unnerving.
Overall, I''m having a hard time fighting the demons today. Two other children that were our
in-house neighbors, won't see this Christmas. The floor lost two close together, and nearly
lost Breanna. I don't know which rattles me more - the fear of infections or not being able to
currently "fight the beast". Suffice it to say, I feel like a split personality. One minute I'm
laughing at my goofy little one who is sticking her tongue out playing hippo, or "Ho Ho Ho-ing"
- and the next minute I'm panicking - taking her temperature or Cloroxing something. Its a bit
bizarre. As you say your thank-you's to the universe for your healthy families, please say a
prayer for these families too. I can't imagine their agony.
I've decided to try to deal with my craziness by renewing my daily thanks with more fervor.
Thanks for each and every second I have my girls, thanks for each day we are not in the
hospital. Thank you, thank you, thank you to the universe!
Thanks also to all of you who continue to send us long distance hugs and love. We
appreciate each and every one of you. Your open hearts have lead you to share our story
with your friends and families, and their kind hearts have sent us positive thoughts also. To
anyone who eventually reads this - thank you!
I'm looking into getting a domain name and setting up a web site for Avalon. I feel bad for
pestering all of you so often. If anyone knows anything about website design...help! I'm
about as uneducated as is possible about all of this. A friend once told me that I was "highly
trainable" about computers, so I hope to be a capable student, if anyone knows anything.
Alright, I've clogged your emails enough for the moment. I'll try to return everyone's emails
today. I apologize for being behind. I appreciate every word you all send, we've just been
ravaged by a stomach virus circling through the family this week, and bleck...I'm behind in
everything! I hope all of your holiday shopping and decorating is going smoothly and that
you are all up to your eyes in merriment.
Avalon's Army of Angels