Greetings, good friends and neighbors!
OK...can I hear a chorus of "the best laid plans of mice and men..."? I admit it, I've once again
fallen woefully behind in my updates, my postings, my (egads - hurt me on this one...) diet.
I will do the "catch you up" emails (because I've got loads to say!), but not today. Today is just
about today. My...that's almost too simple of a phrase to have come from me!
In case I'm sounding a bit nuttier than normal, let me expand that thought a tad. Today was
Avalon's monthly clinic visit and round one of this month's chemo. This email is to fill you in, fill
you up, and top you off with our mountains of good news!
"Let's start at the very beginning..a very good place to start..." (a pickle to those of you who
know what song that's from) Our clinic visits are now down to once every four weeks. Today
was our September visit.
Daddy stayed home today to take care of big sissies one and two, so Avalon and I could have
a more peaceful day. Yeah...who am I kidding... Daddy stayed home to take care of one and
two, so that we still have three kids by the close of business today. After the last couple of
trips to clinic with all of my children in tow...it became abundantly clear that I've reproduced
way too much, and that offing one or two of them might not be such a far-fetched idea. Case
solved...Avalon and I headed out alone.
Mind you, our morning was not without the usual last minute craziness. Being the
super-mommy that I am (quit laughing...), I planned ahead (I mean it...quit laughing!) - and
gave both Ambrosia and Avalon baths yesterday afternoon - to avoid the morning bath frenzy.
Great plan. Great, that is, until the girls wanted a spoon of peanut butter as a late, before-bed
snack. Funny, how things like super-sissy-love, tackle-hugs NEVER crossed my mind as I
handed them their peanut-flavored hair cement. Long story short...I was too pooped, duped,
and looped to fight the Bath Wars again...so my peanut brigade needed new baths this
morning. I admit to contemplating a sequal to our head-shaving era....but instead, opted to
look wistfully back at the days when a smooth skull meant easy cleanup. Baths it was.
Late, as usual, Avalon and I bolted out the door - and on toward the clinic. We spent the trip
talking about everyone we would get to see. One by one we named our beloved nurses,
PCA's, clerks, and patient friends. I'd ask Avalon if she would tell people "Good Morning" -
and she lied and said ,"Yeah!" Note, the inclusion of the word "lied". That would be because
the second we hit the parking lot of the hospital...she clammed up. Hmmm, clammed up
doesn't exactly cover it...think feather-falling-onto-a-pillow, mafia-hit-man-on-trial,
fish-farting-in-the-ocean - kind of quiet. I'm not sure she actually spoke 6 words for the first
several hours we were there.
Meanwhile, staff that she has previously hugged and smooched on, were mortally wounded
that she wouldn't even recognize their existence today. Truth is, I think she decided that if she
pretended they weren't there - they couldn't possibly keep her. She darn near hurt herself
trying not to laugh at Diane (nurse practitioner). This kid takes stubborn to levels here-to-fore
unknown to mankind. May the universe take mercy on my soul when she's a teenager...
As I've described before, the first thing we do at clinic is check height, weight, blood pressure
and temperature. Normally, this is the part of the day that she likes. She grins for the PCAs,
chats happily with them, and gives high-fives. Today, she steadfastly refused to even
acknowledge Ryan and Sarah. Avalon's little 'tude aside - we had one whopping big boatload
of good news at this first stop. Avalon recorded a chart-topping, unprecedented,
not-to-be-believed...10.7 kilograms! (23.5 pounds) Wahooo!!! OK, so the reality is, she's still
a peanut. But this peanut never reached 10 kilograms until 10 months into treatment. Last
month, she'd fallen again to 9.8 kg. To have rebounded back up to 10.7 in a month - is
phenomenal! Record this as my first happy-happy-joy-joy jig of the day.
Next, we were off to the infusion room for Avalon's port to be accessed. Although Eileen (one
of Avalon's favorites) took us back, Avalon was actually accessed by an emergency room
nurse who is learning how to access. Avalon was a perfect candidate to be a guinea pig - her
port sticks up like an alien baby waiting to explode from her breastbone. A blind, three-legged
jackrabbit could access her with no problem. She's a nice confidence builder for someone
learning to "plug" kids in. I also got to stick my two-cents-worth in about what we parents
prefer for accesses. We've had some awful ER experiences. It was nice to get my hands on a
"green" nurse - and save some future kids from bleck. Happy joy joy jig #2.
From the infusion room, it was back to the waiting room - to wait for an exam room.
Shockingly, the wait was reasonably short today. Shorter still, was the wait for Diane. She
nearly followed us into the room she was so quick. OK, I was up to joy-joy jig #3.
The exam was flawless. Avalon's been eating, playing, pestering, and antagonizing...perfectly
perfect for a two year old. Although she nearly busted a seam trying not to grin at Diane's
antics - she was very agreeable for all aspects of the exam. We've spent nearly a year trying
to convince her that it won't kill her to open her mouth. Today, when she spent the day being
cantankerous, she opened her mouth wide enough to make the crankiest hippo-mother happy.
My only question had been about dark red circles that appeared and disappeared under her
eyes last week. For a few hours at a time, she would look like she does when her hemoglobin
is low. She'd lay down, and quietly shut down for a while - but then bounce off of the couch a
few hours later, like it was all my imagination. Since we know her blood values can't fluctuate
that rapidly, Diane came to the same conclusion I had..who knows? It could be she was
fighting a virus, it could have been her immune response to high pollen counts, it could have
been a growth spurt... Who knows? We'll continue to watch her carefully this month - and
potentially go in for counts if she does it during the same time frame as this past month. Its
just another chapter in the story - never a dull day with these guys.
We got the best news after seeing Diane - Avalon's counts. Her ANC was a fabulous 1748!
As I explained last month, this month's values would determine her oral chemo levels. They
want to keep our kids' ANC's between 1000 and 1500 - so two readings over 1500 means an
increase in her oral chemo. She's now up to 75% of her "normal" dose. I'll be interested to
see what she reads next month. Its a bit odd having your life revolve around a number that
you have no way of predicting or affecting. Just when we thought we were safe - we weren't.
We've learned the lesson - there is no more dropping our guard. Regardless of that
nonsense, 1748 was certainly call for hippy-dippy-happy-joy-joy jig #4!!!
Obviously, this problem isn't ours alone. One of our chemo buds - Finn, had the same thing
happen to him last month. His ANC had been rock solid for 8 months - then suddenly dropped
to 400. The following two weeks, he sat at 0. Their best guess is that it was a slight virus he
was fighting - just like Avalon had been. So not only do we have to panic constantly about
mold, fungus, and bacteria...we have to build armaments against the common cold - to keep
from losing them to bacteria. Ack! Oh you have to love these "chapters"...
While we waited for our turn in the infusion room, two employees from the Children's Hospital
Foundation came to visit with Avalon. Avalon is doing another awareness thing for the hospital
next week, and these people were kind enough to follow my advice of coming to meet her
before the event. Although she has adopted a permanently bashful clinic persona, her true
nature is to be only a bit shy. Once she's met you - she will recognize you at subsequent
meetings, and be remarkably comfortable with you. Thankfully, Jennifer understood my
request and took the time to come and "make nice" with Avalon. Since Avalon went from
hiding behind the hood of her stroller - to sharing her beloved "hulless" popcorn with
Jennifer...I think the plan worked. I'll let you know.
From the waiting room, we went back to the infusion room, for a completely smooth infusion.
We left her "accessed" (needle in) because she has to go back to the hospital tomorrow for
phase two of this month's chemo.
Avalon is now in the Maintenance phase of chemo. The glorious thing about that is, her spinal
chemo is now only once every three months. This couldn't have come at a better time - since
we had decided that she could no longer have the procedure in clinic.
Avalon is one of a small percentage of children who react negatively to the sedatives they give
for procedures. Rather than relaxing her, calming her...the drugs tend to make her act like
she's snorted a kilo and a half of cocaine. The effects have worsened over time - making her
increasingly difficult, and dangerous, to do in clinic. All future lumbar punctures (spinal taps),
interthecal chemos (spinal chemo), and bone marrow aspirations will have to be done in an
OR, under general anesthesia. General anesthesia carries its own inherent risks - but they
statistically pale in comparison to the likelihood of paralysis when you are sticking a needle in
a child's spine and three adults can't hold her still. It makes for long days and a difficult week
when we have to schedule it - but thankfully, we're down to that once-every-three-months
So there you have it. Lots and lots of good news! I'll send out an update tomorrow to tell you
how the OR date went, but we anticipate no issues. Its nice to come home with lots of good
things to share.
Speaking of good things, our dear friend, Abbey, has a wealth of good news. She is done with
her stem cell transplant, done with her radiation, and done with the littany of torture she's
endured. She has final scans to double check next week - and if all goes as
anticipated...Abbey will finally be on the road to normal. If I can request any positive thoughts
this week, they're for Abbey. I can't wait to cry, jump, dance, and scream that she's clear,
clean, and all good! Go Abbey, go!!
I hope I've been able to bring you a smile or two - after we've
all been so saddened this past week by our nation's tragedy.
I know that our emails are self-centered - they are, afterall,
about our journey. I do hope, however, that you all know that
we share our story as our way of helping others understand
theirs. I know we've found our deeper connection to our
fellow humans, and after this past week, I have a sneaking
suspicion that most of this country has, as well. If any of our
"forward friends" have been touched by Katrina's
maddness...our hearts are with you.
As usual, I want to thank each and every one of you who take
the time, make the effort, offer the positive thoughts, and
open your hearts to our family. We appreciate you - and
hope to someday be able to hug each of you until your eyes
bug out. Its the least we can do....
Alicia, Nick, Aurora, Ambrosia, and Avalon
|This is what happens when
a two year old finds a
Avalon's Army of Angels