Avalon's Army of Angels
August 16, 2008
Hope Street Kids at the Zoo
This evening was the Hope Street Kids event at
the zoo.  (I talked about picking up the tickets from
KNK a few days ago)  Its finally time to tell you how
much I love this organization.  

Hope Street Kids was the brainchild of
Congresswoman Deborah Pryce, R-OH.  The
charity was born of her own nightmare, losing her
daughter to pediatric cancer.  Rep Pryce didn't
wallow or succumb to the paralyzing pain of losing
a child, she stood up and began shouting to the
Heavens that this should not be allowed to happen
to others' children.  Politics have nothing to do with
this.  Whether you agree with hers or not - she's a
woman of strength who deserves to be admired.  

Rep Pryce not only started Hope Street Kids, she
has led the battle in Congress to officially
recognize and financially support our children.  
She's made several attempts to secure federal
money for our kids, and this year she finally

Rep Pryce wrote and co-sponsored the Conquer
Childhood Cancer Act that we've been fighting so
hard to have passed.  For more than a year,
members of the  pediatric cancer community have
been storming the doors of our congressional
representatives and senators.  We wrote emails
and letters, made videos and photos, and begged
for a few spare minutes to plead our case in  
person.  We took the cue from our children's
oncologists, and banded together to fight the
beast, with Deborah Pryce leading the battle cry.  
On July 31, 2008, we won.  President Bush signed
the renamed
Caroline Pryce Walker Conquer
Childhood Cancer Act
into law.  link to story about
the CCCAct  Finally, after years of begging,
someone recognized that our children matter.

Congresswoman Pryce is a hero in our cancer

As it happens, Rep Pryce is from our local district,
Columbus, OH.  Her daughter was treated in the
same hospital Avalon is, and she walked the same
lonely halls we do - with a terribly different
outcome.  It puts me in a place of odd
indentification.  I know we've tread  the very same
footsteps, and it haunts me to know that she and
her husband had to make that one last walk.  I
can't fully express how touched I am that she has
worked so tirelessly to make sure that more of us
don't join her on that torturous path...

As with most of the doctors who work with
childhood cancer, several of the charities
cooperate as well.  While Rep Pryce founded Hope
Street Kids, she is fully supportive of, and
respected by CureSearch.  Each organization
seeks a cure in its own way, linking arms in their
pursuit of the ulitmate goal.  

CureSearch organizes a yearly lobbying
extravaganza in Washington DC called
"Reach the
 For several days, families of pediatric
survivors, active warriors, and angels, converge in
DC and storm the halls of Capital Hill, in an attempt
to make our kids visible to the men and women of
power.  For the past few years, this event has
been focused on the task of passing the CCC Act.  
This year was no different.  In fact, this Reach the
Day had reached a near frenzied pitch...victory
seemed so close to our grasp...

Nick and I had desperately wanted to take the
family to attend Reach the Day.  With his and
Avalon's picture on CureSearch propaganda, we
figured we'd be the perfect family to help the
nay-sayers realize that our kids are important, and
are very, very real.  Sadly, Avalon's unanticipated,
poorly executed shunt surgery of May 28, left
her in no condition for the rigorous schedule the
lobbying families keep.    We had to forgo our
plans to help.

What really tugged at our hearts, was missing the
Celebration dinner CureSearch arranged in honor
of Rep Pryce.  I would have loved to have been
there and cheered wildly for this woman I feel so
connected to.  As it turns out, the head of our
Heme-Onc department, Dr. Tom Gross was the
keynote speaker and introduced Ms. Pryce,
making us even sadder that we weren't in
attendance.  Dr. Gross and I have been chasing  
each other in and out of several local charities
since he arrived in Columbus.  We've shared lots
of laughs as we stump for money.  Avalon adores
him, he's high on the huggability scale.  I would
have been thrilled to be able to share their

Luckily, two of our local friends were able to
attend.  Eden Adams is a neuroblastoma warrior.   

She has valiantly been battling NB since a few
months before Avalon's ALL diagnosis back in
2004.  Eden, her father, Rourke, and her brother
Riley were able to attend Reach the Day.  I
honestly believe Eden was pivotal in swaying the
hardened hearts of some of the worst Senators.  

Our own Republican Senator George Voinavich
has earned a special place in Hades in my opinion.
 He knew Deborah Pryce as her daughter battled
cancer, yet he staunchly fought the senate version
of the CCC Act.  He has never even bothered to
meet with any of the families that I know from OH,
not even those in his district.  At the Reach the
Day event, he sent a low life staffer to dismiss the
families, telling them Sen Voinavich supports the
NIH, and its not his job to worry about individual
diseases.  Yeah, it sounds great that he supports
funding for the NIH.  But what we have been trying
to beat into these congressmen, is that the NIH
has routinely taken money that was assigned to
pediatric cancer, and redirected it toward adult
projects.  We didn't want any new or additional
funding, we simply want a law guaranteeing that
our money can't be redirected.  

As Senator Voinavich's staffer tried to dismiss our
families, Eden was allowed to speak.  It should be
noted here that Eden is not winning her fight.  The
battle has been long and has taken a great toll on
the body of this adorable little girl.  But make no
mistake, her spirit is as indomitable as ever.  Eden
is a charming, charismatic little princess capable of
melting the hearts of the coldest stone creation.  
When she was given her chance to speak, she
begged for her life, saying simply that she wants to
live.  Not very long after those meetings, the same
Senate that threatened filibusters and holds
against the CCC Act....passed it unanimously.  I
choose to believe that her simple, innocent
honesty finally forced our children into those
frozen hearts.

Eden and her family were also joined by Hannah,
her mother, Jessica, and her brother Duncan.  
Hannah is a rhabdomyosarcoma survivor.  She's
more than 6 months off treatment and doing
beautifully.  The families are very close, and spent
their days in DC fighting the good fight together.  
Both families were able to attend the celebration
dinner for Rep Pryce and became close friends
with her.   So close, in fact, that the two families
were invited back to Washington, to stand in the
oval office as Pres Bush signed the Act into Law.  
In the above link to the article about the CCC Act,
its Hannah Pres Bush is looking at, and Eden
that's grinning at the camera.

Both girls are also featured on the home page of  
Hope Street Kids
they're the two cuties together in the center picture
at the top of the page.  Knowing all of this, I
shouldn't have been surprised to see Eden's
smiling face first thing as we arrived at tonight's
fundraiser at the Columbus Zoo.  There she was,
grinning and being hugged by Dr. Gross, on the
first big poster welcoming you to the event.  What
a pair!  

I'm grateful that Hope Street makes several tickets
available to two local organizations, KNK and
Adventures for Wish Kids.  While the $100 per
family ticket price is reasonable, its still extremely
out of our meager budget.  Without their
generosity, we wouldn't have been able to share
such a magical evening.  

We arrived at the zoo shockingly on time.  That's
pretty rare for us, we're kind of perpetually tardy.  I
suppose living 7 minutes from the zoo didn't hurt.  
We were one kiddo shy, as Aurora had previously
committed to babysitting for our beloved Lucy.  
She was certainly not mortally wounded.  Given
the choice of baby hugging over small talk at yet
another charity event....Aurora will run toward the
diapered diva any day.

We made our way to the back of the zoo where the
event is held.  Of course we had to make the
perfunctory stop at the carousel first.  Our zoo's
carousel is normally $1 per child, so we save riding
for nights like this when the kids get to do it for
free.  The girls couldn't get in line fast enough.  I
surrendered my normal carousel duty to Nick,
since he's missed the last several family events.  
Here I was, thinking he and Anam would enjoy the
opportunity to bond on bobbing horses.  I was a
smidge misguided.  Anam HATED the entire
ordeal.  As you can see in the pictures, my wimpy
little picklehead was terrified of the plastic pony.  
He did OK the last time I took him on - but
dissolved into a simpering puddle for Daddy.  As
they whirled and twirled to the music, Nick
vacillated between shooting me dirty looks for
saddling him with Super Wimp, and laughing as
Anam climbed higher and further from the
offending horse.  As for me?  I just laughed.

Arriving at the event, we realized that the smarter
approach may have been to secure a table
then torment the toddler with the equine
roundtable.  Here we were, stroller, wheelchair, two
adults and three kids...wandering aimlessly,
convinced we'd be eating on the ground.  
Thankfully, we saw friends from Kids N Kamp, and
they moved friends to their table, freeing up one
for us.  Whew!  Crisis averted.  

As I headed to the food line with the first two
minions, I ran headfirst into Jessica, Rourke, Riley,
Eden, and Hannah.  Jessica and Rourke had the
you have got to be kidding me  look Nick and
I had undoubtedly had moments before.  Easy
enough to fix, I guided them back to our table and
we decided to make a party of it.  

Eden, Hannah, and our middle daughter,
Ambrosia, are all within 6 mo or so of age.  
Hannah's birthday is only days away from
Ambrosia's, they're both 7.  Eden is the elder of
the group, at a whopping 8.  Toss in Avalon at 5,
and we had a giggling gaggle of little girl

Eden, Ambrosia, and Avalon spent most of the
evening together.  Hannah did her own thing a lot
of the time, thoroughly honked off that Eden dared
to laugh with someone other than her.  Oh little
girls, they can have such "tudes" when they want
to.  Funny enough, we've been at Hannah's house
before, its not like the girls are strangers.  Its just
that my girls were suddenly deep in Hannah's
territory and she didn't take to that so kindly.

Rourke and Jessica are good for my soul.  They
see the insanity of this cancer life, and appreciate
each minute they're given - the same as us.  
Rourke has every conceivable right to be bitter,
sad, or angry.  He's none of them.  I'm quite sure
he has his moments, but in general, he's one of
the most life-affirming men I've ever met.  We had
several good laughs over the girls doing activity
after activity that their doctors would undoubtedly
frown upon.  I'm sure people sitting near us
considered calling the padded wagon patrol for
one of our laugh riots.  We had all been
complaining about how ridiculously loud the music
was.  Rourke said even Eden griped, and she is,
quite literally, half deaf from chemo and radiation.  
I mentioned that she and Avalon were the perfect
pair, since Avalon is half blind.  We nearly fell off
our chairs, when we decided that if we could
half-mute Hannah, we'd have a full set of
monkeys....  OK, maybe only cancer parents find
that funny...

After dinner and speeches, the girls headed off to
the bouncy play monstrosity.  They chased that
with the hockey puck hit and face painting.  The
coupe de grassi was the evening dancing.  The
girls boogied together, with other people's
children, and even with some local beauty queens.
 When the band was done, they danced on stage
until the bugs threatened to carry us off.  

In between things, we managed to snag Rep Pryce
for a quick picture and many, many hugs and
thanks.  As I chatted with her, I told her how much
we had wanted to attend Reach the Day and her
dinner.  I told her that she may have seen Avalon
before, and told her about the Nick/Avalon photo
being on the CureSearch cards.  She was so
excited to get to meet Avalon!!  She went on to tell
us that she thinks that picture is the most beautiful
representation she's ever seen of childhood
cancer.  I'm getting goosebumps even now, as I
recall her words.  She said our picture lives on her
desk, that she always wants that image close to
her heart.  Yep, getting goosebumps and a bit

Rep Pryce went out of her way to seek out Nick
before we left.  She hugged him and thanked him
for being a part of such a wonderful expression of
our kids.  I may disagree with some of her politics,
but you can count me as a huge Deborah Pryce
fan.  She has not only fought for my daughter,
she's embraced her as well.   She was truly a class
act.  And her good bye hugs were the perfect
ending to our fun evening.  

Thank heavens we had brought Avalon's
wheelchair.  Little miss was so exhausted, she
nearly fell asleep before we even left the zoo.  
She's such a funny duck.  It doesn't matter how
tired she is, or how much pain she's in - she has
this magical ability to put it on hold, as long as
there is fun to be had.  But once she perceives the
fun is over, watch out.  She simply collapses.  

Tonight's event was hard on Avalon.  She actually
had to rest several times between fun-isodes.  She
chose to sit and watch Ambrosia and Eden
bouncing around a couple of times, because joint
pain and debilitating exhaustion got the best of
her.  Its an odd thing watching her at events like
this.  I go back and forth between elation watching
her giggle and frolic, to pained sadness, watching
her have to sit and observe.  Its never far away,
that gnawing reality of how frail she is.  Tonight
though, I had Eden to smack me back to reality.  
Eden is losing ground, and yet she's enjoying
every minute she possibly can.  Who am I to whine
in the face of that?  

Besides, this was not an evening for regret or
sadness.  This was an evening with good friends,
good cheer, and good heart.  We left the zoo tired
but elated.  It was glorious to get to spend an
evening together that was wholly positive.  And
better yet, we only had that 7 minute drive before I
could take off the shoes that Ambrosia had warned
me not to wear!!  You've got to appreciate the
small stuff.
The saga of the carousel begins...
Avalon - happy kid #1
Ambrosia - happy kid #2
Anam - Not feelin' it
Game officially over.
Eden, Avalon, and Ambrosia
Eden and Ambrosia, deep in discussion
Ambrosia, who begged to bring
Eden home with us for a sleepover
If you're not being painted, you
must watch the other one
...see note above...
Bored baby brother who couldn't
give a fig about face painting
Eden's tattoo
Avalon's unicorn
Ambrosia's "bracelet"
Looking, thinking, being
Here's to dancing like you don't have a care in the world....
Pageant winners
Tired, but really happy and on our way home.
Congresswoman Deborah Pryce.  Thank you, Ms Pryce.  
Our hearts are in your debt.  Thank you for working so
hard to keep our children with us.
Dr. Gross and Eden's sign
A sweet pageant girl