June 1, 2005
Busy Week for Avalon
Our Journey:
Avalon's Army of Angels
Welcome back from the long weekend!  I hope you all managed to stay dry, eat lots, and relax
your worries away.  To our friends in the service, a single day won't ever say "Thank You" for all
you do for us and the world.  We salute you.

Avalon's past week was a tad insane.  Well, maybe a bit more than a tad...we may have actually
made it all the way to "skosh" insane...

As with most of my long-winded sagas...this will require a bit of background information.  (I know, I
know...knock you down with a feather....;-)  )  As I have written before, Children's Hospital
Columbus has the Children's Hospital Foundation.  It is an umbrella fundraising group that serves
the hospital.  Several months ago we learned about Circle of Friends, a branch of that umbrella
that raises money solely for pediatric cancer research.  Being the oh-so-shy, wallflower-type that I
am...I contacted Circle of Friends and offered to do anything I could to help them.  

Long story short, I became acquainted with Nichole who is in charge of Circle.  Poor thing, she
never knew what she was getting herself into.  She should have had a clue, since we have a
mutual friend who is as "quiet" and "reserved" as I am...but I'm not sure she ever saw it coming.  
Like it or not, I adopted Nichole to our e-family.  That was several months ago.  

Several weeks ago, Avalon and I dropped in to see Nichole after a clinic visit.  I, again, offered
any help I could for Circle of Friends.  Nichole asked if we could use Avalon as the poster child for
an upcoming event, and, of course, I was ecstatic!  My beautiful short person will get to smile and
help convince financially blessed people to share their bounty with cancer kids.  Who on earth
could say no to that?  Bonus, I get to write a story to go with her pictures.  Hurt my feelings...I just
hate writing so much...

Well, if you're going to use a cutie-patootie for a poster child, you might want  cute pictures of
her!  Not that I don't take my own pictures, but golly, gee whiz - you might just want professional
ones.  I told Nichole I had a few professional photographers in mind, and I would call them and
ask for help.  Little did I know, one of them that I was thinking of, was already a staunch supporter
of Circle!  Oh the world works in mysterious ways...

OK, back to the "background" info.  Nichole's next door neighbor, in the "cube farm" of the
Foundation, is Abby.  Abby is in charge of Children's Miracle Network stuff.  Nichole asked if she
could share our name and history with Abby, that she might be able to use us for the telethon.  
Again, it was an opportunity to turn our sorrow into good...again, of course, the answer was a
resounding, "Yes!"  I've certainly made our lives an open book with the website, these ladies are
just allowing us to touch people in a new way.  (OK, taken out of context...that phrase might raise
a few eyebrows...)

The exposition section of the story is now complete, we can move on.  Week before last, I had
made the appointment with the photographer for Avalon's Circle of Friends pictures.  I needed to
get in touch with Nichole, so she could interface with the photographer about her specific
requests.  As I was calling her Monday, I thought I'd also better check in with Abby, to see if we
should plan on anything with her, as well.  As luck would have it, Abby was in the office, and did
want to talk to us. She signed us up to be interviewed live during the Children's Miracle Network
telethon.  So chalk up one poster child event and one live interview, two chances to give back to
our cancer community.  All in all, a good day on Monday.  

Tuesday wasn't quite as positive as Monday.  Avalon was scheduled for an MRV on Tuesday.   
The MRV is to find out if her veins can take another sub-cutaneous infusion port (SIP).  (Cross
your fingers, toes, eyebrows and nose hairs that she can...the PICC is the pits! )  The MRV
requires sedation, so Avalon was to not have food after 4 a.m., only water or Sprite until 8 a.m. .  
She and Nick had to report to the MRI offices by 9 a.m., for a 10 o'clock procedure.  It all sounds
simple enough...if Mommy wasn't a giant twit.  

Yes, I rank as loser Mommy of the week.  As you all know, Avalon still nurses, especially when
she's sleepy or stressed.  As with any other crack of dawn...Avalon rolled over Tuesday morning
and "plugged" herself in.  Admittedly, at 5-6:00 a.m. I am not at my personal best.  I did what I
normally do, gave in to the little sucker fish and went back to sleep.  That is, until some phantom
being inside my conscience smacked me upside the head and reminded me that Avalon wasn't
supposed to eat.  All told, she only nursed for a few minutes.  However, the doctors determined
that even that small amount was too much for anesthesia.  Way to go mom...I single-handedly (or
"boobedly", as the case may be) delayed her getting her port back in.  It was not a good day for
either of us.  She was forced to wait, I was eaten alive with guilt.  I was not a fan of me on

As I was waiting for Nick and Avalon to come home, I received a phone call from Children's
marketing department.  Our local CBS affliate has a very strong relationship with Children's and
does a feature story about them once a week.  They were putting together a story about ALL,
and the marketing department wondered if we would be willing to let them film Avalon.  In for a
penny, in for a pound, of course I agreed.  I said, "Sure, we're an open book about our lives."  
The marketing woman laughed and said "Well, if you have a web site, we pretty much knew that."  
Since I hadn't told her about our web site, I had a good inkling who had "given us up".  Abby
confessed later that week.  

The reporter, Heather Pick, called later that afternoon about possibly coming out the next
morning to film.  ACK!  A camera crew in my house...in less than 24 hours.  Double ACK!!  Thank
goodness, God, the milkman, and Donald Trump that we had an appointment Wednesday
morning to have Avalon's pictures taken.  Whew!  We managed to dodge the electronic bullet
until Friday morning.

Wednesday's photo shoot was FABULOUS.  Sarah, at Kent Smith Photography, was our portrait
guru.  She was kind, encouraging, warm, and unbelievably artistic.  She is worth every penny that
people pay her...and then some.  I wish we had the where-withal to afford her normally.  She was
beyond amazing.  

Julie, Sarah's assistant, had requested that the family all wear black tops, in case Sarah wanted
to use us as "props" for Avalon.  She did, indeed, use Nick as a major prop.  With his solidarity
baldness, black shirt and muscular arms...he was the perfect background for Avalon.  
Surprisingly, Sarah ended up taking family pictures as well.   I'll never know exactly how she
managed it...but she convinced Avalon to pose naked.  Normally, if we take her shirt off, she
shrieks - because she anticipates someone doing "owie" things to her.  Sarah's quiet,
comfortable atmosphere worked miracles on shorty.  She posed for some amazing pictures.

Sarah became involved with Circle of Friends because one of its founders is a regular client.  She
said she'd been looking for years for a charity to really devote her heart to, and when her client
began chatting about Circle, she knew she'd found it.  I hope Circle knows what a treasure they
have in her.  Avalon did.  Sarah got the official Avalon seal of approval, hugs and smooches.  
Avalon is rather particular, she doesn't hug just anybody.  She's a darn good judge of character,
Sarah is a gem!  

The pictures actually belong to Children's, this was a gift from our family to Children's.  Avalon is
very photogenic, and a good representation of childhood leukemia.  We've told the hospital they
are welcome to use her image as often as they like.  I can only hope her beautiful little face will
bring in lots of research dollars.  Sarah has graciously said we can post the pictures on Avalon's
website, I'll let you know the second I do.  I hope they'll allow us copies of them for Avalon's
memory album.  I think Sarah really captured who Avalon is.  

Thursday was the most normal day of the week.  Ambrosia had speech therapy, Aurora had
ballet, and I had several heart attacks in the making, as I tried to make the house "camera ready".
 I'm here to testify, nothing...and I mean NOTHING... can strike fear in the heart of a woman like a
camera crew in her house!  I am permanently outnumbered by my children, I have spent weeks
on the Heme-Onc floor of Children's Hospital, I live in a horrible neighborhood, I've been inside
the cages of lions, tigers, chimps, and elephants...and I swear upon my life, I've never known fear
like that of an impending camera crew!!!!

As I weighed the pros and cons of no-sleep circles and puffiness, verses lack of perfection...I
decided to compromise.  After all, the reporter and camera were really only going to see two
rooms, the "toy vault" (our enclosed front porch) and the family room.  As long as I achieved
perfection in those two...the rest of our domicile could fall a bit short.  As the saying goes...the
best laid plans of mice and men...

Heather, the reporter, and Steve, the cameraman, arrived exactly when promised.  They were
punctual nearly to the second.  We seriously need to have them give seminars in promptness to
the phone company, cable company and the entire home repair industry.  They could be
beacons of hope to the millions of us who have had to sit chained to our homes for the infamous
8 am - 3 pm window that the shmucky utility companies give you...

OK, OK, back on task.  Both Heather and Steve were very warm and friendly, and instantly put us
all at ease.  As you have all figured out, I'm not necessarily the shyest creature out there,
particularly on a soapbox subject.  Well, I may as well have trotted out my box.  I'm sure I had a lot
more to say than they wanted. I tell you though, I have to get better at talking about the night of
diagnosis.  I can talk about most things with ease.  But that night, and the kindness of the staff
who had the arduous task of welcoming us into this hell...well, they are all still a little too real.  I
can still feel the stone in my chest that I felt that night - and it doesn't necessarily make me the
best speaker on the subject.  I have to say that I welcomed Heather into our family that
morning...she cried when I did, not so very reporter-like.  A soft heart is always welcome here...

Before you think it was all fun and games, there was a rather large primate tool in the works.    
Here we are, sitting on the couch.  Avalon trying to lick Ambrosia, Ambrosia giggling like a
monkey, me spouting off about loving the staff at Children's...  Pretty typical Havan family stuff.  
Then Heather said the most terrifying thing I've ever heard!  "Let's go film you at the computer
working on the website..."  

"EEEEEEEEEEEEEEKKKKKKKKKKKK!!!!!!!"   "What kind of sick joke was that?   AAACCK!  I had
a large coronary on the spot.  I started stammering, "No, no - that room isn't camera ready!  My
desk?  Good grief, are you kidding?!"  Heather calmed me down and we went to the dreaded
dining room/converted to library that was so NOT camera ready, so she and I could look at the
website and talk together.  Meanwhile, Steve filmed the girls.  Truth is, I think Heather was
scouting just how bad it really was.  Bless her heart and soul and any other body parts we can
throw in there...when we went back to the family room - she told Steve they would have enough
without filming the computer stuff.  At some point, I may have to kiss her Keds for that...  

And so our TV moment came to an end, as Heather and Steve had other people to scare
sockless.  Aurora and Steve had bonded over Irish step dancing, Ambrosia had managed to keep
her dress down most of the time, and Avalon had decided Heather was one of the good guys -
she gave her hugs and a smooch.  All told, I'm pretty sure I aged a dozen years or so - but I
found a new friend, did some good in the world, and it all balance out pretty well.

The story will air in Columbus on WBNS 10TV on Thursday night June 3, at 5 p.m.  Heather said
they will hopefully link to Avalon's website - so I'm looking at no sleep over the next 48 hours as I
work like a Schnauzer to get it finished.  No stress there.  Hey, if the stress keeps up at this pace,
Avalon will have more hair than me by mid-June!

Also, our interview for Children's Miracle Network, is Saturday night, June 5th - at 10 pm, also on
Columbus' WBNS 10TV.  We will be leaving Aurora's dance recital for BalletMet and going
straight to the hospital.  This should be interesting...

OK, kids are shrieking, and speech therapy is calling.  I'd best end this for today.  Fair warning
though...we have lots more to tell you this week!  Start doing your eye exercises to prepare

Love and hugs to ALL of you.  You are what keeps us sane....

Alicia, Nick, Aurora, Ambrosia, and Avalon