Hi there fellow Avalon-watchers!  I've got one whole email
of fun, fun, fun.  Do you think you can stand it?!

Today, Sunday Sept 11, 2005 was the Third Annual
Cancer Survivor's Celebration for Columbus Children's
Hospital.  Even though Avalon had quite the rough day
yesterday, she was behaving a bit better today.  We
decided to try going to the picnic, because we could always
leave if she got too fussy.  I'm ever so glad we "gambled".

We had no idea what to expect at the picnic, we just
figured it was a chance to get her out of the house, in a
reasonably "safe" environment.  After all...everyone there
knows
exactly what we're up against...they are either in the
fight like us, or graduates of it.  It was a safe bet that no
one with their death of a cold would wander into this group.
 

The picnic was held at Homestead Park in Hilliard, OH.  
Wow!  This is one fabulous place!!  There are fishing
ponds, walking paths, multiple different playgrounds and
exploring areas...it was amazing.  We're definitely headed
back some afternoon when it won't be so crowded.  
Anyway, our group was in a lakeside picnic shelter - with
auxiliary tents set up nearby to house some pediatric
cancer groups with their info and craft tables.  

The first group we saw was Adventure For Wish Kids.  You
all know how very much I appreciate these people - I've
babbled about them to you several times.  Even though I
rant and rave about them regularly, even though I've
helped them find a few new events, even though I've talked
to their founder on the phone a dozen times...I've never
had the privilege of meeting her.  Guess who was the first
smiling face we saw?  Yep!  We finally got to hug Kathy
Derr in person...and it set the tone for how wonderful the
whole day was going to be.  

We staked out a table in the shelter, to keep Avalon out of
the sun.  While she rested a bit, Aurora helped AFWK
finish setting up their table.  Then we had time to peek at
"fishies" in the pond, and get drinks while other groups
finished setting up.

Once things were officially rolling, Nick and I took the girls
around to the different info/craft tables.  At AFWK, each
girl got to decorate a metal piggy bank to take home.  
Aurora and Ambrosia were plotting how much money they
could save in it - and Avalon just wanted to hug it.  At the
Kids in Kamp booth, they all made fun little charm bracelets
- and we found out about another wonderful charity.  We
didn't think Avalon qualified for Kids in Kamp...we were so
wrong!  They seem to have lots of great programs/ideas.  I
can't wait to learn more about them.  The two little ones
decorated T-shirts at another station, and Avalon was
given a baseball hat by Hope Street Kids.  All three girls
were "painted" by Hope Street.  Avalon got a smiley face
on her hand, Ambrosia got a butterfly on her leg, and
Aurora talked the painter into smiling lips with fangs on her
arm.  They were all thrilled with their "tattoos".  I don't know
much about what Hope Street does, their brochure was a
little vague...but I'll let you know once I find out more.

By the time the girls were done making rounds, it was time
to get in line for lunch.  Lunch was provided by Outback
Steakhouse.  Chalk it up as yet another reason to love that
place!  There was pasta salad, huge chicken fingers for
the kids, and
fabulous grilled chicken breasts for the
adults.  It was a nice dinner out...at a picnic.  Outback
really outdid themselves.  

The easiest way to feed Avalon was to leave her in the
stroller and pull it up to the end of the picnic table - it
worked perfectly as a high chair.  As we were eating, who
should walk up?  None other than our wonderful nurse
practitioner, Diane.  Avalon was thrilled!  Her excitement,
however, was not so much as to slow down the process of
shoveling food in.   It is, after all, a steroid week, and
Avalon is currently in "feeding frenzy" mode.  We invited
Diane to join us, since she had come alone, and we always
have room for one more.  She sat down and chatted for a
while, then went off to visit with other patients and families,
all of whom greeted her with huge smiles and the same
appreciation we feel for her.

Next we spied Dr. Ranalli, Avalon's attending.  He was
deep in conversation and laughter with former patients, but
it was fun to see him in a baseball hat with a huge grin,
instead of a serious, contemplative face.  I absolutely
adore Dr. Ranalli.  He's got an ornery sense of humor, and
a heart as big as the outdoors.  We resolved to make sure
to track he and Diane down before we left, for a few
pictures for the website.  

We were already having a perfect day, when one of
Avalon's favorite nurses, "Tiffy" came by.  Avalon had
finished pigging out, and had requested to be sprung from
the stroller, and be a big girl - sitting on the picnic bench
by sissy and mommy.  Tiffany snuck up behind her - and
softly called her name.  When Avalon turned around, she
squealed, "Tiffy!!!!" and gave her a giant hug.  She even
let Tiffany pick her up and pose with her for a few pictures.  
This is huge news, in light of how she's been behaving at
clinic the last three months.  

After diagnosis, Avalon was terrified of anyone wearing a
Children's badge.  Over time, she learned that secretaries,
social workers, office staff, weren't too scary - only doctors
and nurses.  Given even more time...she came to not only
trust, but actually love several of the nurses and PCAs.  
She would hug and smooch on them - and look for them on
the floor and in clinic.  The last few months though, she's
regressed back to super shy girl.  Women that she used to
seek out for hugs, she won't even look at.  My honest
opinion from the last few visits, is that she knows exactly
who these people are...she is just choosing to pretend
they're not there.  I think she's decided that if she ignores
them...they won't keep her.  For example, at last week's
appointment, she was nearly biting her lip to keep from
smiling at Diane.  Eventually she couldn't take it, and
grinned - but you could actually see her stopping herself.  
She talked about the staff the entire drive to the hospital -
but never spoke one word to anyone once we were there.  

Avalon's squeals for "Tiffy" and Diane proved that she
does love and trust these women, its the place she doesn't
like.  That's just fine with me.  It was breaking my heart
thinking Avalon had begun to mistrust these people again.  
Fact is, she's smart.  She does like them, she just doesn't
want them to "keep her" - so she's pretending she doesn't
know them.  Out of their normal environment, she couldn't
have been friendlier, in fact...she got quite friendly...

After Tiffany said "Hello" she headed off to get lunch.  We
had also invited her to join us, as always, everyone is
always welcome in our family.  While Tiffany was getting
food, Diane returned with a plate of pasta salad.  Avalon
patted the bench next to her asking, "sit hewe (here),  
Diane...sit by me...sit hewe."  Diane couldn't resist.  Soon
Tiffany came back...and Avalon instructed her to sit by
Diane.  Quite the little hostess she was!  As we all chatted,
I suddenly spied little miss Avalon...plotting to steal a
noodle from Diane.  No sooner did I see her...than she did
it.  Swiped it right off of Diane's plate!  Diane laughed, and
said.."Oh, did you want a noodle?"  "Yes."  "Its OK, you can
have some..."  Famous last words.  "Some" - became
all of
them, Avalon cleaned Diane's plate!  Between giggles,
Tiffany told Diane, "Well,
you're the one who put her on
steroids...you'd better be prepared to feed her!"

Nick felt bad, and went and got Diane another plate of
pasta salad.  Good thing...because Avalon ate half of that
too!  She did, however, eventually remember her manners.
 She not only stole noodles...she made sure that she fed
Diane too.  Diane was very good-natured about all of it,
she laughed and, I'm pretty sure, enjoyed getting to see a
whole new side of Avalon.  We made she and Tiffany
promise to tell the other nurses that Avalon does actually
speak, smile and laugh.  I swear some of them think she's
a mute.  Little do they know...

In the middle of the noodle-fest, we were joined by
"Mandy".  Mandy is actually Dr.
somebody (I have no idea
what her last name is), but we kept her as Mandy - so
Avalon would be friendly.  Diane quietly explained about
our Dr. Gross catastrophe at the Wendy's Championship,
so Mandy introduced herself as Mandy...and left it at that.  
Consequently, Avalon thought she was great.  After
introducing herself, Avalon then continued to introduce
everyone else at the table to Mandy.  "Dis is 'Boshia,
'Rora, Daddy, Mommy...and (as she gestures over her
shoulder) dat is Diane (chew chew)"  

"Well, that's nice to know.  But who is that down there?"

"Oh,  dat is Tiff - A - nee!"  Said with a huge emphasis on
the "A".  The funny thing is, Avalon insists on calling
Tiffany, "Tiffy".  We thought she didn't know the difference.
 Turns out...she not only knows her real name, she can
say it now.  She justs opts to keep her little personal
nickname for Tiffy. Tiffany was enamored, Diane was
amused...I was a bit taken aback.  Avalon is smarter than
we realize sometimes....we could be in some serious
trouble....  

Eventually, our little medical conference was also joined by
Dr. Ranalli and his wife.  Again, it was great fun to get to
interact with him in a non-medical setting.  I took the
opportunity to ask several questions about his career and
interests - that we never would have had time for in the
hospital.  I came away more impressed with him than ever.  
I hope to have similar conversations with several more of
the doctors over time - it was fascinating.  I think parents
would be touched by some of his answers, they certainly
weren't what I expected...they were better.  

In all, it was an absolutely perfect day.  The weather was
great, the food was delicious, and we had the privilege of
spending quality time with some amazing people.  It was a
special gift to be able to share conversations with "people"
we know and respect...rather than just trading medical
questions and answers with Avalon's care team.  I cherish
the fact that they hugged Avalon, teased us, and shared
their lives with us for that day.  We are truly blessed to
know them.

Overall, I consider today one more reason to see this
journey as a blessing, rather than a burden.  We're lucky
people...

Hugs to each and every one of you!!  
Love,
Alicia, Nick, Aurora, Ambrosia, and
Avalon
My tie dye girls are ready to
go!  
Making piggy banks...
Making T-shirts...
Icing...YUM!!
Diane, Avalon's nurse practitioner
Diane being "robbed" by Avalon
"Tiffy" hugs.
"Talk to the hand, Dr. Ranalli..."
L-R: Diane, Ambrosia, Aurora,
Avalon, Nick, Dr. and Mrs.
Ranalli looking at "fishies".
Avalon really was in that other
picture!
Wheeeeeeeeee!
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Our Journey:
Avalon's Army of Angels
September 8, 2005
Avalon
September 8, 2005
Avalon
September 11, 2005
Third Annual Survivor's Picnic