The good news is that the media coverage of Rowan's plight has already led to one retinoblastoma diagnosis in England. We hope the continued exposure can help other parents (and friends of parents) discover this sooner. On that line, we would like to stress one thing: most of the pictures of Rowan that TV and internet news outlets choose to use came after her first treatment; this means her tumor is very noticeable. The drugs included in her treatment dilate her eye and accentuate the tumor. Before her treatment, the tumor was only noticeable in photographs. When you look at old photographs of Rowan, you'll notice that instead of "red eye," one of her pupils has "white eye." The only change we saw with the naked eye occurred very late- a slight darkening of the iris. While we didn't notice any change to her iris until around August 1st, old photographs reveal "white eye" as early as February.
A very good story on ABC. Here's Britain's Mail Online and The Mirror. There's also the Digital Journal. There's more. Jenny put up a very sweet and sensible post; when this is all over I'd like to write an article stressing how the internet isn't just porn, piracy, and pedophilia. Its also the power of (life saving) networks; the collaborative contact with others, which opens the possibility of response, compassion, and love.
Rowan continues to be the story of the hour; we're getting [persistent] interest from some pretty big media outlets. We've declined most requests, and gone exclusive with one show that agreed to fly Madeline (the woman who first recognized Rowan's tumor) over the pond to meet us. This is exciting to both of us. I cannot begin to describe how sleazy, for lack of a better term, the contact people for news media shows can be. As a professor of rhetoric, I noticed just about every dirty trick in the rhetorical handbook yesterday, and a few from the art of war. But I'm trying real hard to let the small stuff go. And not all of them are evil. But, while trying hard to avoid a strong defense/weak defense position, let me say: ughhh. We're emotionally spent. Make the phone calls stop.
5 comments:
Sorry you're being hounded, though I'm not surprised your 15 minutes is taking off like this. It IS a remarkable story.
But how do you feel about Rowan's picture/story spreading out over the net? I googled her name and she's showing up in news in several European countries and even Brazil. Definitely something to consider for your article, Santos.
I guess this would be the good/bad- or perhaps- difference of networked existence. It certain has moved beyond our "control" (evidenced by the fact that I'm "David" in about half the stories). Most of the stories contain some significant inaccuracies. Meg refers to it as the telephone game writ large. So, on a micro level, we see the same typical complaints: the internet is not to be trusted...
But on the macro level, word is speading. X number of people who previously knew nothing about retinoblastoma now know something. Even if the "something" they know isn't entirely accurate. And that's what Meg and I are hoping for. As I said, we know for a fact that at least one baby in the UK has already been diagnosed as a direct result of Rowan's story.
I doubt that the story will remain hot for too much longer, I don't think this will be one of those "Oh my, your the cancer baby" kind of things. It might. That would be weird. I do think it is interesting that Rowan will have some kind of place in public memory, however so small.
No surprise that during your moment of fame you would get all types of slimmey offers, as well as legit ones...I know that feeling.being hounded..Is it no wonder celebrities wind up punching some of the more charming ones in the nose..!!I did see the clip on Today show....The girl Meg has been commuicating with seems so humble and it appears as if she is also overwhelmed at all the attention.....But it is wonderful that another child was found hopefully in time....2 miracles ...!!! I hope Rowan did not get too sickly after her initial home visit....Does she appear to be alright, or has the treatment slowed her down? As you know we are still praying.....I do hope you write a book on this experience Marc with Megans input..so keep notes...and yes the internet is wonderful thing...during my lifetime, I went from phones where you had an operator referred to as "central" who knew everyone in town and could ring them up (when I was a child and visited the farmlands of my relatives in West Virginia) to today where you can communicate both by telephone or computer with anyone in the world without a physical connection of anytype...so amazing that we can find all info, any info , and the Louve right on line...!!!
In fact, Mike & I were discussing how even though all our kids live far apart...with Skype and cam cameras we can keep in touch ALL the time...In fact when Colleen got married we even saw the wedding sitting at home in the kitchen because their County Offices had a camcorder in the Marriage clerks office...It was wonderful...San Mateo, Ca.
@Mary-Ann:
Rowan's doing o.k. after her first treatment, although she did develop a minor infection that had us in the hospital for five days.
We've been home since Wednesday and Meg's mom is here visiting. She's already passing through the "bad" time of this treatment (ten days later), so hopefully we're out of the hospital until her next treatment September 19th.
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