Avalon's Army of Angels
|August 23, 2008
The Jonas Brothers Concert!
Grammo and Pappo brought the girls home this afternoon. They came with tons of stories
about the Newport Aquarium, lots of souvenirs, and lots of giggles about the movie they saw.
Not to mention the Ava-choli and Broba-choli they'd made for dinner, or the chocolate
cupcakes they'd made for dessert. I should probably describe 'choli. Years ago, a
co-worker of my mom's gave her a recipe for mostacioli. (no clue if I'm even close on the
spelling) The girls all LOVE mostacioli. When Avalon was on active treatment, it was often
one of the few things we could bribe her into eating.
Ever since Grammo first introduced mostacioli, the girls have pretty much expected her to
arrive with a pan any time she visits. If we go to her house, its a given that at least one
night's dinner will be 'Choli, as they've come to call it. Several months ago, we realized that
Ambrosia has developed a sensitivity to tomatoes. With tomato sauce as a main ingredient,
our beloved 'Choli faced extinction in our house. Grammo and Pappo to the rescue! They
invented what we now call Broba-choli, by replacing the tomato sauce with alfredo sauce. Its
not quite the same, but it sure makes her happy.
When we coined the term, "Broba-choli", Avalon decided we should rename the original dish,
"Ava-choli". Seemed like a good idea to us! Now truthfully, we're not supposed to call the
new concoction "Broba-choli". It totally ticks off the middle princess. You see, "Broba" is
what Ambrosia called herself for the first 4 years of her life. We all remember it fondly, but
Ambrosia insists its insulting. She steadfastly maintains the new dinner is "Ambrosia-choli".
In front of her, we acquiesce. But every last one of us says Broba-choli when she can't hear
The girls thought we needed a good dinner to fuel up for the big concert, so they begged
Grammo to help them make Choli to bring home. It usually takes all of 30 seconds to beg
Grammo into something like that. She's a giant marshmallow.
Sadly, about halfway through Choli-making, Avalon left the kitchen and went and laid down.
Grammo called me soon after in a panic, Avalon was complaining about a headache. I had
Grammo ask a series of questions, and relay Avalon's answers and demeanor. We're pretty
sure Avalon's headache was more sinus/sicky than shunt, so I told Grammo what to give her,
and crossed my fingers, toes, and eyebrow hairs that it would work. A few hours later,
Grammo called to say she was doing better, but still looked puny. Puny I can deal with,
shunt malfunction I can't.
Eventually, home they came with their food, their stories, and their loot. Trying to sort out
the competing tales from their vacation was a riot. As one would tell you about the shark
show, another one was talking about the giant plastic frog she sat on. One was describing
ray sharks, and the other one was talking about how to pet a shark with only two fingers.
Good thing I've mastered multi-tasking. A lesser human may have imploded.
The entire trip to the aquarium came about because of its frog display. Avalon's birthday
this year was a frog theme - her idea. We had a frog cake, frog plates and tablecloth, and
she wore a frog outfit. She even went on a "Fantastic Frog Day!!" program at a local park
with her Aunt Nettie as one of her gifts. When we found out the Columbus Zoo was
celebrating the "Year of the Frog", Avalon became convinced she had magical powers and
could influence the world. Therefore, when the Newport Aquarium announced its own frog
extravaganza, it seemed like the perfect fit for their special vacation.
It turns out, the aquarium's frog display failed to impress. The girls barely mentioned it in
their frenzied tales of the day. Worse, Grammo and Pappo couldn't bribe, cajole, or threaten
the girls into any frog merchandise. Pappo had purchased and worn a special "Its not easy
being green" Kermit shirt for their fancy frog day. And Grammo, picked up a nifty green frog
shirt at the aquarium. But my girls? They wanted mermaids. Pappo tried to talk them into
cool shark shirts since that's what they really loved seeing, but it was a no go. Face it,
sharks are cool to look at, but waaaay too boy to wear. When Pappo argued that the girls
hadn't seen a mermaid, so they should get a shirt of something they saw, Ambrosia was
quick to counter. "But Pappo, mermaids live in water too!" You can't argue with that logic.
So, much to Pappo's distress, his little shark-watchers came home with "boring" (Pappo's
words) mermaid shirts and "silly" stuffed mermaids. At least the girls agreed to rubber
sharks. But I think they only got those because they squeak so loud they could double as air
Pappo and Grammo satisfied their frog fantasies by bringing Anam a rubber frog and a
froggy t-shirt. He chewed on one and utterly ignored the other one. I might have coveted
mom's t-shirt, but with my hooters, the frog would have looked like he had a thyroid
condition. (the shirt had two large eyeballs in a baaaaad place)
Grammo and Pappo had also taken the girls to see an animated 3-D movie about flies going
to space. It sounds like the movie was a riot, but they left with a bit of sticker shock. How's
this for outrageous? First, you had to pay to get into the movie. Then, you had to buy the
glasses you needed to see the movie!! Yes, you read that right. You HAD to buy the
glasses, no borrowing. No way. No how. And best of all, they didn't tell you that, until after
you had your original ticket. Pappo was not pleased. In fact, its fair to say Pappo had
considered voodoo revenge. C'mon, don't the theaters already ransom enough from us?
Holding you hostage for the specs seems a bit Machiavellian.
Grammo and Pappo were unbelievably generous enough to agree to stay with Anam, so we
could go to the concert without him. I love my son, but there's a reason we have several
nicknames for him like Picklehead and Anam-zilla. Actually, there's several reasons, how
long have you got? Suffice it to say, no one would have had fun if we'd had to take the little
crumb cruncher. He's at that leave-him-at-home-at-all-costs stage. Its that, or find a baby
tranquilizer that's legal.
A few hours of gossiping, giggling, and gulping later, we were finally headed to the
much-anticipated Jonas Brothers Concert. While I can't say I know two bongs about them,
my girls certainly do. Half the conversation on the way there was about which brother was
cuter and why.
This concert was a gift to Avalon from our dear friends, Lori and Doug. We met Lori and
Doug through the Columbus Blue Jackets Hats for Heroes program. We attended a horse
race that was a fundraiser for the HFH program, and got to know them there. Meeitng them
was like meeting people we'd known for decades. They were a perfect fit from the time we
said, "Hello". Doug and Lori have been unbelievable generous to our girls. They've given
me more teary moments of joy than I can count this past year. But truly, none of us would
care if the only time we ever saw them was coming over for dinner. Our kids have come to
love them both deeply, as treasured real friends. As our beloved Marnita would say, they're
boogers. (stuck to you, incapable of being shaken off) Its hard to explain, just believe me its
the highest compliment this family can pay to someone.
For the Jonas Brothers, Doug and Lori booked one of the suites at Nationwide Arena. We
attended the concert with Doug and Lori, a friend of Lori's from work, Colleen, Colleen's two
daughters, Yasmin and Melika, and another Children's hospital cancer child and her mom
and two sisters. In a suite, you have your own bathroom (Yay! for the germophobe cancer
moms), a small sitting area with wet bar, and stadium seating like in the rest of the arena.
The great thing is, the kids can dance without worrying about bothering other people, you
can go to the restroom in a clean place without missing much of the show, and we "fluffy"
people don't feel like sardines waiting for our pizza debut. Doug and Lori were also
wonderful enough to have pizza, pop, and water in the suite. The girls were in heaven!!
This was also a bittersweet night. We've come to adore Colleen, Yasmin, and Melika. We've
spent time with them at Doug and Lori's house. In a disgusting twist of corporate greed,
Colleen and Lori lost their jobs when Limited Too was recently massacred. Since Colleen
had moved here from England specifically for that position, she's now aiming home across
the pond. While I know her family will be thrilled to have her back, we're terribly sad to see
them go. As with Lori, I fell in love with Colleen the first time we met. Its rotten to have to say
goodbye so soon. Thankfully, the internet is a wonderful tool, and the girls and I have
already promised to stalk Colleen and her kids and remain e-pals. For tonight, we tossed
the baggage to the curb and thoroughly immersed ourselves in pure, mindless fun. It was
Avalon started the night out full of anticipation, and seeming to forget the ills of the morning.
She danced with reckless abandon to the opening act. As with the Hannah Montana
concert, I found myself teary watching her. This summer has been unabashedly AWFUL.
I've tried to convey to you what its been like watching her lay in a hospital bed in absolute
agony. I've watched her retreat into herself to try to deal with what was happening to her. I
had to walk away from her, as she was wheeled away sobbing, terrified. Its been an awful
summer of memories that will haunt me forever. To stand there, and watch Avalon bobbing
along gleefully to music.... It gave my heart wings. You know those rock n roll t-shirts that
have that on them? I'm here to tell you, its a real thing. In that moment, in that beautiful,
priceless, piece of time...my daughter was free. She was feeling the music as it washed over
her, letting it take her on her own flights of fancy. She was a five year old little girl, like all the
others in the stadium, living purely in that moment, and feeling nothing but joy. She was
whole. I don't know, maybe I'll never be able to explain it. All I can say is, I'll never forget
what it is to watch her dance, its love in motion.
Lori caught me watching Avalon. I'm pretty sure she caught the tears too. There have been
so many times this past year that this wonderful woman has given me these moments with
Avalon. How can I ever repay that? How can you tell someone they've made your heart so
full you can actually feel it expanding in your chest? Somehow, thank you just seems so
inadequate. You say "Thank You" to someone for holding a door for you. What do you say
when someone holds your heart and mends your soul? I don't know, but I'm sure I'll spend
years trying to figure it out. All I'm sure of is, I wanted to stop time, and watch Avalon dance
Unfortunately, the beast that robs Avalon didn't stay at bay for long. He reared his ugly head
even earlier tonight, thanks to the cold she's fighting. By the time the second warm-up act
hit, Avalon had already found a seat. She spent the rest of the night quietly watching, taking
it all in. She was, in fact, so quiet...that Ambrosia came to find me to say she was worried
about Avalon, she wasn't acting right. Nick watched the Jonas Brothers from a seat behind
Avalon so he could keep an eye on her. I spent as much time watching her body language
as I did the concert. And Aurora made several trips down the steps to make sure she was
really OK. Aurora managed to talk her into dancing for one Jonas Brothers song, but she
didn't even make it all the way through. Damn monster...I wish he'd leave her alone.
Because there is such a gap in the journal on this website, most of you may not know about
the mythical beast that robs Avalon. The main IV chemo that Avalon took is well-known for
causing peripheral neuropathy. (affecting nerves in the extremities) Avalon's genetically
wonky immune system read the bi-products from that temporary neuropathy as a cue for the
body to continue destroying nerves. Over time, Avalon suffered extensive nerve damage.
She experienced de-mylenation of her motor nerves (slowing down how fast signals are
moved to the muscles) and some axonal nerve death. The doctor described the nerve death
like this. Imagine a telephone line is meant to run on 100 wires. If it is only running on 80
wires, it can do the work OK for a little while, but it will fatigue easily. That's Avalon. The
best I can describe it is, Avalon is given a finite amount of energy each day. If its a quiet
day, watching TV, or doing school, then she's alright through the entire day. But...if she
does something taxing that requires a larger-than-normal energy output, she will crash and
burn later. For example, bouncing for 5 minutes in one of those blow-up bouncy rooms, will
cause her to nearly have to lay down within the hour. One bouncy time, and its guaranteed
she'll be on the couch by 6:30 or 7.
If anything else is affecting Avalon's body, it automatically reduces her available energy
stores. Recovering from this summer's surgeries has been excrutiating. She's averaged
12-14 hours of sleep a night for weeks after each surgery. Her body put so much energy
into healing, there was little left over for activities. Every time I've described an outing to you,
I've left out the toll it takes on Avalon the next day, sometimes for several days. This is why
Avalon has her "chariot". (wheelchair for the uninitiated) Avalon can handle walking short
distances, but more than a few minutes, and its a toss up to which she'll complain about, her
joints or being "sleepy-tired" which is how she describes exhaustion.
As I've mentioned before, Avalon will do her best to stave off the beast if there is fun to be
had. She's particularly adept at hiding it when she has a chance to spend time with Grammo
and Pappo. Knowing she'd had such a big, fun couple of days, we were worried about her
stamina for the concert. Add in that she was working on possibly catching a cold, and its not
hard to understand why she only danced for a few songs. But as I say in nearly every entry,
life is for the living ~ so live it she shall! And dancing or not, Avalon enjoyed every second of
the concert. She's had lots to say about it since.
While the opening acts had good rhythms and music, I wasn't terribly enthused about the
quality of the singing. Then again, I'm not twelve. I'm surely not the target audience. But, I
did cop to the good rhythm, and I do admit to shaking my ample derriere on several
occasions. When in Rome, after all...
As for the Jonas Brothers, again - I haven't the foggiest about their music. I've heard the
year 3000 song, but only because the Disney Channel has played it to death. While I may
not have known word one of their songs, I have to give them a giant thumbs up for the stage
show. I'm not kidding, folks, it was fabulous! Keep in mind, I'm a child of the 80's. I love
heavy metal and big hair bands. I think all concerts should be entertainment, not just dudes
on stage with guitars. Hold onto your collective britches... This concert beat the Hannah
Montana one by about a light year and a half. Not only did the boys have costume changes,
but they had moving stage parts, lights, video stage sections, huge projection screens, pyro,
lasers, and even a string section!! This was spectacular!!!! Who knew? Someone,
somewhere (other than KISS and Motley Crue) still believes in putting on a show. Color me
I was also blown away by the fact that cameras were allowed. Kids and happy moms were
snapping pics all over the place. What a nice thing to allow! Most concerts feel more like
military checkpoints these days, threatening bodily harm if you even consider bringing in a
camera. It was nice to have mine to be able to record some of the magic to share with you.
Unlike most posts, I'm saving the pictures until after the writing. That way, I can make them
bigger so you can see the detail better. Our box was clear across the stadium, but my digital
zoom, and bracing the camera on the countertop I sat behind, helped me get some pretty
decent shots. I'm not going to post them in chronological order like I usually do. I think it will
make more sense if I group them by subject matter. I hope they give you a sense of how fun
the evening was.
Not only did the band put on a great stage show, they actually played and sounded great.
No, their music is not my personal cup of tea. But the boys can actually carry a tune and
have good pitch. (unlike the Disney creation that sang before them) All around, I give the
concert an A++. The only reason it didn't get another + was the timing of the thing. The
show started at 7pm, so we were under the impression we'd be done by 10pm. The Jonas
Brothers didn't take the stage until 9pm...and we weren't headed out until after 11. Great
show, nice effort...waaaay late on my tiny diva. The second the lights came on she crawled
into her wheelchair and begged to leave. She was asleep before we got out of the parking
All told, it was a tremendously memorable and fun evening. I'll never be able to thank Doug
and Lori enough. No matter what the future holds, we have a beautiful memory that no one
can take. There is no greater gift than that.
Hope you enjoy the pictures!
|I'm so excited! And dig my sparkly
|Ambrosia and Yasmin kept going
|OK, even the big girls took breaks sometimes.
|Above: the dancing is taking its toll. The
others are still going, Avalon is just standing.
Right: she gave up and found a seat. This is
where she stayed all night.
|Doug, Lori, Melika, Yasmin, Aurora, Ambrosia, Avalon
You can see the arena behind them, they're facing away from it.
|You have to love people who
want pictures of your kids!
|Aurora talked Avalon into one Jonas