|April 1, 2005
Sent: April 3, 2005
Subject: Avalon update
Hello all! I know I'm a bit tardy with this update. Take me out and whip me with a wet noodle.
Yes, Avalon had an appointment last Thursday, March 31. I should have sent this update on
Friday, but I felt that the call for blood donation was more important. As miserable as Avalon
is, she'll make it through...but without blood, she might not have, and neither would countless
Yes, Avalon is incredibly, abundantly, completely...miserable. Thursday's appointment brought
nothing but bad news. (Actually, the only good news was that Thursday began the last week
of this horrible part of chemo...) Let's see if I can remember all the "goodies"...
All of Avalon's blood values are bottoming out, right on schedule. Her ANC was down from
over 8000 to 400. By today we're probably less than 100. Her hemoglobin was low enough to
require a transfusion on Thursday, and will probably dictate another one in the coming weeks.
Her platelets are the lowest they've been in months. If they don't recover, she'll need a platelet
transfusion, as well. Low platelet counts mean we have to worry about any form of bruising or
cuts - because of the potential of severe bleeding. Avalon's blood pressure was low, a
possible indicator that her port infection is rearing its ugly head again. Considering that she's
begun complaining about the port and rubbing her left arm again...we're basically figuring it
may just be a matter of time before we're back in the hospital. We can hope for a miracle
Avalon's heart rate was elevated. That can be an indicator of dehydration, or of the low
hemoglobin. We know the hemoglobin was rotten, but frankly, dehydration was also probably
a factor. This round of chemo has left Avalon very nauseated and rather disinterested in
anything food-related. So much so, that she lost over a pound last week. We're under 20
pounds now. Yeah, I told you...nothing but bad news.
Thursday night, she woke us up by throwing up in her sleep. How's that for a fun evening?
Friday brought another trip to Children's, because her port began bleeding. Neat. I admit,
blood in her tubie, and soaking the gauze under her dressing...freaked me out. Apparantly,
I'm not as shock-proof as I thought. A J-5 nurse de-accessed and then re-accessed her, and
helped me do that night's chemo infusion. Then we visited with friends that are in-house, and
headed on home. Let's hope we get to stay here.
As for now? Well, she's keeping a constant temperature, thanks to the Ara-C infusions. So
far, they've not been high enough to have to go in. She's also keeping a constant vigil with
her anti-nausea meds, as we try to convince her to eat more than a few bites of things. Good
news is, she's also keeping us laughing by loving to rub daddy's bald head, and squeezing the
stuffings out of the cats. In all things awful, there is always a light of joy...
So, that's the current status. Icky, puky, yucky, and awful. Hug your kids and thank your stars
for their runny nose rather than this. Again, we thank you all for your love and support. You
keep asking us how we keep our senses of humor about this, and how we maintain our
sanity...its easy. We have all of you to feed our souls!
I'm going to do my best to work on the website more this week. Please, check it in a few days,
and please send friends toward it. The more people we educate about this journey, the larger
the army grows. We hope to win over new soldiers to help in the war against cancer. Every
dollar donated to Children's Hospital or Adventures for Wish Kids...means new hope for
another family. Every positive thought offered for a cancer child...means one step toward
healing a family's spirit. And every step taken toward awareness...means that
someday...maybe we'll be victorious.
We love ALL of you!
Alicia, Nick, Aurora, Ambrosia, and Avalon
Avalon's Army of Angels