Avalon's Army of Angels
|August 1, 2008
Have poop, but have pain
Wow, what a difference a few weeks makes! Go
Nurse Practitioner Kristin, GO! By running all those
fluids and ordering the boatload of Mirilax - Avalon's
belly problems are about 1000 times better than they
were with the last surgery. Go figure! Get the poop
out, and keep the fluids in...and the whole system
works better. Who would have guessed? (Me!
By most standards, Avalon could actually go home
today. After all, her usual problem of "no go" has
already been solved. However, she's really in a
tremendous amount of pain. We're still using
morphine for pain management, and morphine will
buy you extra time in the big house. Some of these
pictures crack me up. My tiny little stoney makes
some goofy faces when she's drugged.
By far my favorite photo of the day was Dr. Kosnik.
As I've said several times, he's truly a man of few
words. The staff calls him "The Big Guy", "Dr. K", the
"Skiz", lots of things. They call him these things
lovingly, out of respect, out of fear - you choose the
moment. While I have periodically found him
maddening in his silence, the truth is, I've really come
around to thinking he's the bees knees. He reminds
me of Avalon's oncology attending, Dr. Ranalli. I
adore Dr. Ranalli, and love his dry, sardonic wit. Dr.
Kosnik is very similar. He's brilliant, with a mind that
works too fast for most people to keep up with. As
with most people of his intellect, he's quite pleased to
hold onto his own notions with all the veracity of a
lion with a fresh zebra. After all, can anyone else's
idea ever compete with his own fantasticness? ;-)
You see, once I understood Dr. Kosnik, I found him to
be more teddy bear than scary bear. He takes each
of his kids to heart, and while sometimes
unconventional - his methods are always well
thought out, and flawlessly executed. Deep under
his gruff exterior, Dr. Kosnik is about as sweet as
they come. Pictures and grins like that, just don't lie.
We had a bit of a break through in our working
relationship today. During rounds this morning, I
tried to pin him down to a question about Avalon's
shunt and checking her pressure. Dr. Kosnik started
to give his standard answer of, "As long as she looks
so good...." then he suddenly stopped. Instead of
finishing the typical response, he said, "I'll leave that
to Susan - we'll let her tell us what to do." I nearly fell
over! "Susan" is Dr. Benes, Avalon's
neuro-ophthalmologist. Dr. Kosnik caught himself
and acknowledged what it took Dr. Elton a year to
realize - that how Avalon looks means exactly
nothing. The only way to really tell what's going on,
is to keep tabs on the things she can't mask, her
vision and ultimately, her pressure. Wahooooo!!! It
was a pivotal moment. It was also a moment that was
immediately followed by the adorable, loving smile
and hug above. Any wonder I'm a complete Kosnik
You may notice that lots of these pictures have
Avalon wearing a long black t-shirt. The T-shirt is the
one given to her by the Delaware Road Hawgs,
making her an official member of their club. The
nurses thought she was just too coooool. Its missing
in some pictures because she wanted to paint a
picture. Since she's not the neatest painter alive, we
opted for a good old hospital gown to be ruined,
rather than her fabulous new shirt.
The picture of Avalon with Karen doesn't do our
wonderful Karen justice. This amazing woman should
be canonized. She literally knows thousands of
patients by name. She remembers family members,
children, and the little details that make kids feel
special. My girls are absolutely taken with her. They
run around the desk every chance they get to hug
and smooch on her. There have been so many days
that we walked into that building defeated, and
downtrodden...only to be lifted and restored by the
gossamer wings of an earth angel named Karen.
She is a genuine gift to the children of Columbus,
and the rarest of all human treasures.
We also had a brief visit from our cancer friends
Christina and Lisa. Christina was headed off to
Heme-Onc camp. Its a weekend camp for current
and former Heme-Onc patients. This was supposed
to be Avalon's first summer to attend, but its not too
hard to imagine why we didn't sign her up. Good
thing too, since she was firmly planted in-house on
the very day she should have been leaving. No
worries, there's always next year! From what I
understand, there are lots of hospitals across the
country that support week-long camps. Wouldn't that
be great? Ours is only Fri - Sun morning. It just
doesn't seem long enough - but the kids all rant and
rave about how much fun it is.
After Christina and Lisa left, Avalon and I spent the
afternoon checking out lots of her cards. We took a
brief stroll down to the cafeteria, and took part in
oodles of bartering about getting her to eat. Thank
you large amounts of pain, I wasn't terribly successful
in my food wars. That's OK though, at least I knew
that things were "moving" in the right direction. The
biggest surprise of the day was from a rather
non-descript box that had been delivered to the
house for Avalon. A co-worker of my mother's
managed to accomplish the impossible. She
convinced the Mylie Cyrus management company to
do something wonderful. They sent Avalon a signed
(with her name on it!) picture of Mylie, and a concert
T-shirt from the Best of Both Worlds Hannah
Montana/Mylie Cyrus tour. Avalon nearly flipped!
OK, let's be honest. She flipped as much as a my
head is exploding, I'm on IV morphine kid can
manage to do. Mom got weepy. Go figure.
We also had a visit from Avalon's Heme-Onc nurse
practitioner, Diane. I fully credit Diane with saving
Avalon on more than one occasion. She is the most
thorough, dedicated nurse practitioner I could ever
imagine. She has taken better care of Avalon than I
would have known to hope for. She has been friend,
cheerleader, and wise sage. She's always a
welcome sight when she comes to visit. Avalon loves
her as much as I do. She has been more than a gift
to our family, she's been a blessing. Best of all, she
makes me laugh! You really can't ask for more.
Our evening was full of family time. Pappo,
Ambrosia, and Anam stopped in on their way home
from COSI (Ohio's Center of Science and Industry).
As you can see in the picture, Anam appears to have
had a glorious day. Pappo came strolling up pulling
a wagon, and I expected to see a grinning little man
going for a ride. I have to say, I laughed out loud
when I actually caught sight of my tiny guy. So did
Grammo, who had just made it to town after work.
We both nearly hurt something trying to laugh
quietly. Frankly, so did the staff who giggled every
time they walked by.
Ambrosia spent some time helping Avalon open a few
cards and packages. She was great about reading
the cards to Avalon, and oohing and aahhhing over
the cute drawings and stickers people sent. It was
family time at its best, with the exception of the
wounded little monkey we were there to support. It
was definitely different than the last hospitalization
though. No poop patrol nightmares. We all knew we
were most likely headed home the next day. It made
for a more jovial atmosphere!
|The Great, the Grand, the Glorious... Dr. Kosnik
|Heading out for a walk-a-bout and
fishy hunt, wearing the famous
Delaware Road Hawgs T-shirt!
|Our beloved Karen, the
visitation desk clerk. She gives
the best HUGS ever!
|Our wonderful friends, Christina
and her mother, Lisa
|I do believe that Pappo pooped out the
baby. This is how Anam arrived with
Pappo and Ambrosia. Apparently, he
had a bit of fun at COSI. He actually
slept in the hallway like this for over an
hour! Lots of grins and giggles from the
staff and fellow patients.
|Opening package and cards is fun!
Especially when big sissy can
help read the cards to you.
One of Avalon's nurses, Gada made an observation this afternoon. She wondered how I
managed to do it. When I asked, "Do What?", she said, "You've only been here a relatively
short time, and yet the room looks so "Homey".
I have to say, after laughing that I'm a Supreme Packing Machine, I had a brief moment of
regret. The truth is, I'm good at making hospital rooms seem comfy, because Avalon has
spent way too much time in them. But I think it took about 1.2 seconds, and a single glance
around the room to not only erase the sad, but to lift my soul new heights. This time, her
room was filled to the brim and beyond with sheer, unadulterated LOVE. No one could
possibly walk into this space and feel anything but joy. The walls are filled with smiling, happy
faces and sentiments of support and kindness. No child, no family could ever ask for more
virtual hugs than she has already received, and there is literally a case of cards yet to be
To all of you who have shared your hearts and prayers with Avalon - THANK YOU! I promise
I will make an entire section of this website to honor your generous hearts. Thank You for
making this journey much more pleasant for my tiny warrior!!!