Avalon's Army of Angels
September 4, 2008
Sunny 95 Radiothon and Dr. Kosnik
Back to the hospital today for yet another appointment.  This one, though, I was excited
about!  Today we saw Dr. Kosnik, to report what Dr. Benes had found last week.  Today, we
got to plan for the future.  

The morning started off much better than yesterday too.  Today and tomorrow are the Sunny
95 Radiothon for Children's Hospital.  Its a local radio station that puts on a 2 day marathon
telethon to raise money for the hospital.  We've been doing interviews during the radiothon
ever since Avalon was diagnosed.  Over the years, we've really come to love the one morning
DJ, Shawn Ireland.  Her partner Dino is also sweet, but Shawn holds a special place in our

In previous years, Dino and Shawn have stayed on the air for two days straight to personally
man the telethon.  This year, they worked their regular morning shift, and let other on-air
personalities try their hand at fundraising.  Also, instead of live interviews, they pre-recorded
most of their Hero stories, so the quality was high, and they were predictable.  They did talk to
a few patients that wandered through, but it wasn't on this year's agenda.  

We were thrilled that Avalon happened to have an appointment close to the time Dina and
Shawn were going to be there.  My intention was to leave early enough, we would have time to
stop by and hug, before heading up to see Kosnik.  As with most of my "intentions", they can
usually be described as "the best laid plans of mice and men...."  We were running late.  

Now, in all fairness, we weren't running late for our appointment.  Heck, we weren't even
running late for "hug time".  We were simply a few minutes behind schedule to be able to
catch Dino and Shawn as they got off the air.  In a stroke of pure genius (and I do believe, a
fair amount of chutzpah on my part) I decided there was no way I would disappoint Avalon if I
could get avoid it.  So, I whipped out the old cell phone, called information, and had them hook
me up with Sunny 95's office number.  

Two hundred and twelve rings later, someone finally answered the phone.  I quickly asked him
if he could get a hold of Shawn.  He politely answered "Yes, just call #######".  I told him, "
- I don't want to tie up the donor line.  I just need to get in touch with Shawn.
"  He quickly
defended her honor and said its against station policy to give out the DJ's cell phone
numbers.  (yay for the station! I'm glad they protect them)  Again, I assured him - I wasn't
looking for that.  I simply wondered if
he could get in touch with her.  I explained that I was the
mom of a children's patient that's known Shawn for years.  All I wanted was to have him tell her
we were winging our way there, would she please stick around for a few minutes for a hug?  
Mr. Phone Man was incredibly sweet.  He promised to help, took our names, and couldn't have
been nicer.

Sure enough, when we finally ran into the lobby, we were greeted by huge smiles and even
bigger hugs.  Dino and Shawn got the message, and
both stuck around to say, "Hi".  It was
very, ridiculously kind of both of them.  They were thrilled to see Avalon looking so good.  The
last time they saw her was at the Children's Miracle Network telethon, back in June.  I had
followed through with Avalon appearing at the telethon, even though she was still in-house
from the awful, botched shunt surgery.  (in case you're counting - yes, I will ALWAYS  say
"botched" when I refer to that horrible event)  When Dino and Shawn last saw Avalon, she
could barely speak and wasn't exactly part of the same realm of reality the rest of us are.  The
bouncy little sparkplug I had in tow today, was definitely an enormous improvement.  

What was supposed to be a few minute hug stop, turned into a bit of a fiesta.  Avalon bubbled
and giggled and Ambrosia gleefully answered a slew of questions about her cast.  (Ambrosia
LOVED having something medical to talk about!)  Eventually, they decided they needed to
interview Avalon, even though Dino and Shawn were long off the air.  I tried arguing, but there
was no point.  In the end, Avalon did a stellar job.  One of the station guys was crazy with a
camera, taking a pile of pictures.  I even caught him goading the girls into goofy faces - all in
the name of fun for kids.  I warned them their faces might stick that way, or worse, he might
use them - but he promised me he would only keep the good ones....  Liar liar.  :-)

As I began writing this entry, I logged onto Sunny 95's site, to make sure I spelled Shawn and
Dino correctly.  (just being careful)  Lo and behold...what did I find?  Oh, only a pile of
pictures...including the goofy ones!  Too funny.  Of course, nothing the kids did compares to
the HORRIFIC shot of me being interviewed - in a slightly reclining chair, with all of my fat rolls,
being shot from an upward angle....  Yes, I nearly threw up.  Someone, somewhere....
me, its the only explanation....

I copied the photos (with one GRAND exception) from Sunny's site, so I'll paste them below,
with the paltry the few I took.  

No matter how much fun we were having, we did eventually have to drag ourselves away and
go up to see Dr. Kosnik.  On the way, we took our usual bets about how long we'd have to wait
before we actually saw Kosnik.  I was realistic and chose 2 hours.  Avalon was pessimistic and
guessed 3 hours, and Ambrosia was delusional and took a mere 1 hour.  Avalon and I told her
she was crazy.  If she'd been a bit older, I might have mentioned something about "smoking
crack", but I didn't think that was the best comment when my company consisted of a 7 and 5
year old.  None-the-less, it would have been accurate...

Sure enough, the reality was between mine and Avalon's guesses, about 2 1/2 hours.  The
fact is, in the face of Dr. Elton being gone, and the fact that Voldemort is developing such an
astounding reputation among parents (here's a shock, we talk to each other!)  it leaves one
choice for good care - Dr. Kosnik.  One good doctor, and a list of patients that could easily
keep 3 people busy...its a wonder we only wait 3 hours...  Having been damaged by a bad
surgeon...I'm here to guarantee you, waiting 3 hours is definitely worth it.  

When we finally got our turn, the appointment was as good as I could have possibly hoped for.
 First thing, Dr. Kosnik made a point of asking about Ambrosia's cast.  (which was very kind,
and important to a sister who often gets left out)  Ambrosia told him what she had done, and
about how neat her cast is.  As soon as she said it was glo-in-the-dark, Dr. Kosnik reached
behind him and flipped the light off to see for himself.  He agreed it was the coolest cast he's
ever seen!

I reported what Dr. Benes wanted me to, in exact detail.  (I'd made her go over it with me
several times)  I was sure to include her high praise and inside jokes for him - much to his
great amusement.  When I told Dr. Kosnik how "brilliant" Dr. Benes said he was ~ he grinned
in a very ornery way, and said, "Why sure....that's just me...."  You've got to love him!

As I relayed the information Dr. Benes and I had gathered, and the past exams we'd
searched, I had the chance to ask specifically about Avalon's shunt.  I told Dr. Kosnik that Dr.
Benes agreed with my feelings, and what I thought I'd understood from his comments,  that the
current shunt is either not functioning, or doing so very poorly.   He said, yes, that's exactly
what he believes.  It was nice to hear that I'd been correct in how I read his comments and
actions.  I'm getting pretty good at "Kosnik-speak", but eventually paranoia creeps in, and you
doubt yourself.  While its certainly not good to hear that Voldemort did such a poor job the
stupid device isn't even working....it is refreshing to know I'm not nuts.  At least, not in this

Dr. Kosnik laughed at me when I reported how excited I'd gotten in Dr. Benes' office.  Its hard
to describe how breathtaking it is to contemplate having a child with near normal/normal
pressure.  I can't even imagine it!  Will normal pressure fix the damage that's already been
done?  No, probably not.  But maybe, just maybe, we'll see improvements.  At the very least, it
will allow Avalon to finally move
forward in life.  Its really all we can hope for.

As we discussed it, I again began bouncing.  Its just so
exciting!  I told Dr. Kosnik I'd pestered
Dr. Benes that I didn't want to wait, I wanted my daughter back
now.  Dr. Kosnik smiled, patted
me on the shoulder and assured me we'd fix her, but she needed time.  I agreed they were
right, I just couldn't help being being thrilled by the idea.  He continued to smile.  It was a
lovely smile....

I correctly guessed that Dr. Kosnik wouldn't want to see Avalon until after her next Benes
appointment, which isn't until October 28th.  He said we'd discuss her next surgery then.  
When I asked if I could have a new kid for Christmas - he said he didn't see why not.  
Wahoooo!!!  I cannot imagine a better present than that.  Christmas is the time of miracles - I
won't be bashful about asking for one for us....

Then again, the truth is we've had several already.  Avalon is still in remission, Miracle #1.  
Avalon lived through an infected port, necrotic chest tissue, and more low counts than I care
to recall.  I'll lump all those little miracles into Miracle #2.  How about the amazing staff we've
been blessed with?  An oncologist and nurse practitioner that advocated for Avalon and never
gave up on her, always getting her the help she needs, in all areas.  They are most certainly
Miracles #3 and #4.  How about Avalon's neuro-ophthalmologist, a world renowned  expert in
her exact problem?  A woman who has been an ardent supporter and active element in
Avalon's care?  Oh yeah, Dr. Benes is definitely Miracle #5.  Avalon survived a terrible
operation, where poor skills threatened her life, and yet brave, intelligent people saved her
from a beast.  Miracle #6, no doubt.  How about Dr. Kosnik?  He didn't have to accept Avalon
as a patient, heaven knows several other doctors turned her down when she needed them
most.  Dr. K is definitely Miracle #7.  And finally, how about each of you reading this website?  
You're our greatest miracle, you have banded together and shared your hearts and prayers
with Avalon.  You are our Miracle Infinity.  You're so grand, you defy a number.  

So yes, there is no doubt we've been blessed with a mountain of miracles already.  But I'm a
selfish beast, and I fully plan on asking for one more.  I want to meet my daughter again, for
the first time.  I want to meet the little girl that's been held prisoner by pain and torment.  I want
to meet Avalon, and watch her become the miracle she was destined to be.....
Shawn and the girls
Some of our Nationwide Children's Hospital Foundation friends!
This is our valet buddy.  The first time I saw her after the awful operation in
May, she grabbed me and hugged me tight.  Can you imagine any other valet
caring that much?  She's an example of the beauty and joy in the world.
The following pictures are unabashedly stolen from the WSNY Sunny 95
website.  Sunny, I'll forgive you for the picture on there of my roly poly
buttocks, if you'll forgive my thievery.  Then again, your crime far outweighs
mine!   (although, weight might not be the word I want to focus on...)