Avalon's current numbers
We have lots of good news to report. First of all, hold onto your hats...its Thursday...and we
don't have to go to clinic! Wahoo!!!! In fact, it gets better...we don't have to go back to
clinic until Sept 8th. Shock...excitement....disbelief!
Last Thursday, August 11, was Avalon's monthly Vincristine infusion. Her numbers were up
from the week before...from 1024 up to 1650. Best of all, since I finally got to chat with our
nurse practitioner in person, I learned why we've had such a strange month. Most
importantly, I learned that I could let go of some of my panic attacks.
Basically, as we all know, Avalon's chemo is purposefully supposed to suppress her bone
marrow. During the Delayed Intensification phase of treatment, the bone marrow is
suppressed to near extinction. Although Avalon is currently taking the same oral chemo that
she did before D.I. - the fact is, the D.I. phase is so hard on their marrow, that it can take
months to fully recover. Its very typical for a patient to crash like she has.
While we want our kids ANC's to stay above 1000, at least in the case of leukemia kids...they
also don't want it to stay above 1500 for long periods of time. If it does, the worry is that we
might be missing a leukemic cell or two. Therefore, the goal of the chemo is to hold their
ANC between 1000 and 1500. Whatever level of drugs it takes to do that is OK. Currently,
Avalon is holding steady by receiving 50% of her "normal" chemo dose. Over the next 16
months, if her body begins to build a tolerance, we will continue to increase the dose - to
match her body's ability to fight it. Diane, our nurse practitioner, said she's seen kids start
out Maintenance at 50% or even 25% - only to end the phase at 125%! Its all a numbers
game. I'm fine with all of it - now that I have a better handle on it.
Like I said earlier, as long as no problems crop up...we don't have to go to clinic again until
Sept 8th. We've finally reached the "once a month" phase. After 11 months of once a
week...I'm not really sure what to do with myself! I'm thinking we'll all have fun trying to figure
out how to fill the "void". ;-)
Last Thursday really was a great day all around. While Avalon and I went and got our good
news, Nick took the older girls to the Ohio State Fair. They had a marvelous time. Rides,
food, lots of animals, a few games, and some sore feet later...they were exhausted but
thrilled. I'm still hearing new stories about it. They had so much fun, its taken a week to
figure out how to tell me about it! When I post this letter to the website, I'll post a few fair
pictures as well.
And hold onto your hats...my good news doesn't end there! After Avalon and I left clinic, we
went to the Children's Hospital foundation offices for a meeting about the Avalon's Army of
Angels New Diagnosis Gift Baskets. Basically, the meeting couldn't have gone any better.
The only change is that they aren't going to be gift "baskets" - they are officially changed to
gift "bags". I had already changed the idea myself - just not the name. I have found that
tote bags and back packs make great vessels - far superior to my original basket idea. The
ladies I met with were thrilled that I wasn't offended about removing the basket part.
The only other obstacles were storage and dissemination of the baskets. Because I am
willing to store them, and I have already worked it out with our social worker that she is
willing to deliver them...I had their questions answered before they asked them! If only every
meeting in life could go that well...
I'm hoping that we'll be helping families within the next few weeks. All in all its been a good
lesson in red tape and political wrangling. I honestly had no idea the obstacles you have to
leap to do something nice for a stranger. Lesson learned...I am trainable, after all.
So there you have it, up to date..at last! There are actually a few updates that I have written
"in review" so to speak. OK, truth is, I sat down with the calendar and wrote updates to fill in
the cracks that occured during my little "freak out". I'm not going to send you those - but
you're welcome to click on the links below and check them out. As per normal, they are
posted in chronological order of the events they describe. If you read a couple, you'll get
the idea.
I hope you enjoy the pictures. And, as always, we appreciate your interest in "walking" with
us. I'm going to do my best to keep up from now on...this back tracking stuff is way too
stressful! We appreciate each and every thought you send Avalon's way. You are all the
reason we still get to hug her every night. You hold our hearts, and we are forever grateful.
Love to ALL of you!
Alicia, Nick, Aurora, Ambrosia, and Avalon
entire family has these. When we go places, it makes all of us
easy to spot in a crowd. Its fun, and its safe.
