Insignificant Wranglings

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.

Megan is going to do a phone interview with GM TV, London’s version of Good Morning America. Problem: they want a live interview at 8:30 UK time, so that’s 3:30a.m. EST. I will be sleeping through this one.

In the good news department: Rowan is home and very happy to be out of the hospital. She’s walking laps around the kitchen and playing with her toys.

For those that didn’t know, we initially discovered Rowan’s tumor thanks to a mum in England through one of Megan’s baby groups. Proof that the internet isn’t just porn and piracy. Anywho, the story has been picked up by many of the bigger news outlets in Great Britain including The Manchester Evening News and BBC news. We’re hoping that the press coverage can inform other parents and friends to be alert for white pupils. Although this only afflicts 250 babies a year, it is something that everyone can be on the lookout for.

We want to extend our deepest gratitude to everyone who has helped us over the last month. Words cannot express what it has meant to us.

Rowan (and Megan) are still in the hospital. Rowan had developed a UTI- that’s what caused the fever. It is a very low grade fever, and Rowan’s white cell count is still strong (Rowan’s in the most danger 8-12 days after chemo). She’s happy and energetic. This morning she “read” her first word: “Moo,” off page one of Sandra Boynton’s “Moo Baa La.” For those unacquainted, Boyton’s books completely enthrall anyone under the age of five. They make anyone over the age of five want to rip their ears off.

Meg’s mom is in town giving us some extra help and relief. We might try to make a movie this weekend (is Batman still in theaters?). Thanks again to everyone.

But we’re back in the hospital.

Sigh.

Rowan had a temperature this morning (we got 101.6 in the ear, 100.8 under the arm), so we had to go to St. Joseph’s Children’s hospital in Tampa. That was one o’clock; now, at 7:00, we find ourselves checked into another pediatric oncology office. This is all precautionary, as her fever has completely gone away. Still, she’ll receive 24 hours of antibiotics. We’re praying that she’ll be released tomorrow- but she might have to remain in the hospital until Wednesday. We’ll know more tomorrow morning after the attending doctor does rounds. Once again, we’re waiting to find out how long we have to wait.

Sigh. Mother-F@#kin’ Sigh.