I (still) Know Too Many Names

Her name is Charlotte O’Shea — and a year ago, she was the smiling girl, sitting with VB in his pirate pool on a beautiful summer day.

VB and "Othergirl", Summer 2009

She was the first other child we met who had ATRT, shortly after VB was diagnosed. We spent the better part of a year and a half in the battle side by side with her and her family. Then, a week before her treatment was to end, an MRI came back showing she had relapsed. It has been a long journey for Charlotte, her parents, her siblings, her community. I have often thought of them, as we have fought to return to some semblance of the life we had planned, knowing that for them the battle continued without abating.

Until now.

Charlotte left this earth in the early hours of this morning. She was 6 years old, she loved the color pink, and puppies.

Fuck cancer.

Charlotte’s family are members of our Cure ATRT NOW Team for the Jimmy Fund Walk — anyone wishing to honor Charlotte and her family can make a donation through my walk page, which remains active until the end of the year. Remember, the money we raise goes to research ways to improve treatment for this disease. Or, you can make a donation to:

“Charlotte O’Shea Scholarship Fund”
c/o The Bromfield School
14 Massachusetts Avenue
Harvard, MA 01451


VB 12, C0…Right? Yeah, Sure.

There are reasons why people run screaming from a nuclear explosion or plant meltdown. Aside from the hell-fire that is guaranteed to singe away your clothes and most of what’s underneath, those who escape the blast but remain in the area fall victim to the effects of radiation. Nowhere, of course, do we see this with more horrific clarity than in Springfield:

Terrifying and creepy in its cute-ness, no?

Of course in lower doses, radiation does some good. In our case it was one of the many amusing interventions thrown at VB’s little head “back in the day”, in between cytotoxic chemotherapy baths that would probably kill an average adult. And now, every 6 months, we travel to Chez Healing for a day of hope and fear, as the MRI machine makes its loud thumpa-thumpa and searches for proof the kitchen sink approach continues to pay off. Today we once again arrived at that happy proof, but not before the unpleasant reminder that — when it comes to cancer — even the lifeboat can poke you in the eye and make you fall overboard.

Long-time readers may recall that last year we had a relapse scare. In the end it turned out not to be the return of the “big bad C”, but rather some damage to brain tissue near VB’s surgical site that most likely happened as a result of – you guessed it — radiation. It is nothing that affects him in any way, but just his brain’s way of saying “you know, I really don’t think a ping-pong sized hole in your son’s head is enough of a visual reminder. Now try this!”

Shoot forward to today. For some reason (actually, probably no reason, as that’s how cancer rolls, y’all) the tissue damage in one spot near where his tumor used to be has grown slightly. In the grand scheme of things the growth of this damage area is small, and its not causing any problems we can see. But there it is, and it causes us to have to wait an extra 4 hours to get the official “No Evidence of Disease” seal of approval while a team of people who use big medical words gather around computer screens and talk about “T2 prolongation” (really, that’s what the spike on the MRI is called).

We are back at Chez Healing tomorrow for follow-up meetings, and on Thursday a gaggle of the nation’s top experts will once again ruminate on my son’s head to ensure consensus that we have no more to worry about than we do normally. For now, however, we sigh that today was a bit more drawn out than we had hoped, but good news nonetheless.


The Force is Strong in This One

And we come to what could be one of the most critical posts I ever write — dealing of course with the core issue every modern dad needs to address: Star Wars.

Vampboy, making Daddy proud, 2005

When Star Wars came out I was six years old, and near my home was a movie theatre that was attached to a Sears department store. My father told me we were going to Sears to look at lawnmowers. Instead, we walked right past the lawnmower department and into the movie theatre.

I was so excited that I threw up.

We stayed anyway, of course.

I did not throw up when Empire came out, although it took a few drives to the movie theatre before we could get in. I left the theatre feeling sad that Han seemed to be gone forever in his carbonite tomb — and what the heck was this whole thing about Vader being Luke’s father? I too believed it wasn’t possible.

Then Return of the Jedi came out — I dressed as an Ewok for halloween, and Princess Leia in her Jabba slave outfit put me in touch with my hetero side.

Today I am the proud owner of every Star Wars action figure that came out in the 80′s, including one that’s still in its case in prefect condition. Mom thought I might be interested in having something like that some day, so she bought one and stored it away — genius if you ask me.

Now VB is approaching the age at which I was first exposed to the ways of the Force. He knows most of the characters already, although he hasn’t seen the movie and rarely watches television (that’s the power of a peer group who does). Sharing the Star Wars experience with him is high on the “things to do to make fatherhood rock” list….But is 6 years old the right time? Can I wait any longer? And how to I explain the nightmare that is Jar Jar Binks?

Thankfully this group of Dads has brought this complex and challenging fatherhood issue to light. Thank goodness for viral Youtube-ness to frame the question:

Is 6 years old the proper age? Should I rent out a big theatre so he can see it in all its full glory? Do we include episodes 1-3 or not?

Discuss.


The 2010 Vampdaddy Halloween Post

Greetings, Ghouls –

Darkness falls across the land, and from the depths of all that is unholy yours truly returns to feast on my readership…All two of you. BWAHAHA!

And now for some things to keep you up at night….

1. Bears. Apparently Russian Bears have gained the taste for recently deceased human flesh.  Yet another unintended consequence of global warming — who knew?

2. Pumpkin Ducks. Less frightening, but you are no match for the power of my wife’s creativity. Behold!

3. Blood and Guts! Actually, a raw diet — it’s something we’ve started Vamppuppy on over the past couple of months, after about a year of rather unpleasant tummy troubles. They haven’t entirely gone away, but I’m hoping we’re nearing the end of coming home to frightening surprises in his crate — before I go insane.

4. King Vampboy.

Trivia…BWAHAHA!

When being chased by a Vampire, hop over a river or run the kitchen sink. Apparently Vampires aren’t really fond of crossing bodies of water, particularly running water.

Bonus Post….BWAHAHA!

As you may know, I am also co-blogging at Music on a Stick. Go there now to view part 2 of my annual Halloween post. Abandon all hope, ye who click the link!


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