Hurricane Box

One of the fun parts of moving to Florida includes putting together a hurricane box- a box of food and supplies that are there "just in case." I am new to this experience. But, on the advice of a colleague, I went out today and (in addition to picking up Tiger Woods 09) put together my first hurricane box. It contains:

• Frosted Mini-Wheats
• Pop Tarts
• Cereal Bars
• Graham Crackers
• Wheat Thins
• Triskets
• Tuna Fish
• Peanut Butter
• Canned Pineapple
• Canned Pears in Light Syrup
• Apple Juicy Juice
• Peanuts (Lightly Salted)
• Mixed Nuts (Lightly Salted)
• Werther's Hard Candies
• 3 Gallons of Water
• Dog Food

My goodness, I'm so proud of myself I almost hope we're without power for five days so we can put that box to use.

But its not all about the team

I join John Saunders as one of the few college football fans who doesn't necessarily believe college football needs an extended playoff system. I would like to see a four team, two round system, but I don't believe we need a 16 team, multi-round format.

I bring this up because many broadcasters and writers will spend time this season lamenting the plight of those powerhouse teams in the SEC who will not get to compete for the national championship. These teams will eliminate each other in the country's best conference; while top programs in weaker conferences-- notably USC and Ohio State-- will "roll" into the playoffs. Or so the story goes. God forbid a Big East or ACC team go undefeated.

So, here's my sophist position: its not about finding the best team (defined as the players / coaches / system participating on the field), its about determining the best program (which, in addition to everything on the field, includes everything it takes to get those players, coaches, and systems to the field of play). Building a championship program includes acquiring resources. Teams in the SEC have an incredible, ridiculous, borderline criminal advantage when it comes to signing day. Given this huge recruiting discrepancy, I don't pity Georgia's schedule. I find it more remarkable that Jim Tressel can lure kids away from the state of Florida to the middle of the midwest. While Ohio State might not be the greatest collection of individuals every season, it does represent an amazing program- able to recruit significant talent every year. Programs such as USC represent the best programs because they are able to recruit more of the talent available to them. Yes, this is a slippery slope. And no, I don't think an undefeated Bowling Green team should play in the national championship. Yes, I'm o.k. with having a national championship determined by "gray" matter, things that cannot be reduced to simple black and white (or, in more cliche terms, "on the field of play"). But, then again I'm a rhetorician. And...

As a rhetorician, I'm not ultimately interested in the absolute truth of any one champion, I'm more interested in the debate that inevitably surrounds the final verdict. College football provides more debate than any other sport- which is probably why I find myself interested in it more and more each year.

Journalists are Evil, Good

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.

If you're up really late...

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.

15 Minutes of Fame

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.

Thank You

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.

You're not going to believe this...

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.

Waiting to wait: Posted by Megan

Marc left me with the computer tonight, so I thought I would post on his blog. I appreciate everyone for all their support. We really are lucky to have such wonderful friends and family supporting us through this horrible and completely shitty (for a lack of a better word-it is really late and please read the following) time in our lives.

It was a crazy day. We arrived at 545, and then waited, then we waited more, but in a different room, then we waited in another room. She then had her surgery. It went well. She woke up MAD. The nurses were great. Then we waited. We made it to oncology at 330ish. Then we waited. She finally fell asleep on Marc for 1.5 hours. Then we waited. They finally started the cyclosporine at 8 30/900 ish. This isn't the chemo. Finally she fell back asleep in the crib (no small feat). I was interrupted writing this. They just administered her first round of chemo. It is about 1100. Before doing so they needed to take some blood from a pin prick in the finger. That was heart wrenching to watch. It wasn't just a pricks worth of blood they needed to take, it was close to 2mls. That is a lot of blood from one little finger. Then they administered the chemo, vincristine (goes directly into the line via a syringe) and etoposide. She is being monitored for low blood pressure every 15 minutes for an hour beacause of the etopside. Her b/p last reading was 113/66 and she is asleep from screaming herself to exhaustion. I almost passed out and threw up all at the same time. I know this isn't hurting her, but I can't help but feel helpless in this situation. I can't protect her from this. That really sucks. So here I am in a chair that I can't figure out to recline without making a super loud velcro noise waiting for her next administration of chemo drugs, carboplatin, then more cyclosporine and then we can go home. (I dream of home now like some may dream of chocolate cake with homemade ice-cream, or sweet strawberry shortcake made from handpicked organic strawberries on a hot day.) I hope she sleeps through most of this. We have less than 45 minutes till the next round starts.

On the brighter side, since this is her birthday, the nurses set up a banner and some gifts for her in her room. She likes them very much and is greatful for something to do while stuck here. Next time, Mom and Dad will be more prepared for 2 days confined to a boring room. The nurses and doctors in oncology are great too.

In a Holding Pattern

Tropical storm Kay has come and gone... we think. Actually, we're not really sure- it wasn't much of a storm to speak of. Rowan's first treatment got pushed back to Wednesday thanks to the state of (non)-emergency declaration, so we're spending a day hotel bound in Miami. Chances are we'll take a trip out to Walmart to buy a board game or something later today. No need to worry.

Rowan has really got walking down- this morning she did lap after lap around the breakfast area. Some of the other patrons found this amusing ("oh, what a cute baby"). Some found this annoying ("why don't her parents put a leash on her"). I'm finding it quite easy to determine type A from B.

On a side note, we're a big fan of these products, though we're still debating between the subtle "I'm making cancer my bitch" and the more direct "fuck cancer" as the more appropriate onesie. These are the decisions that help pass a rainy day.

B-Day Experience

With the help of some new friends (Marley and Henry), Rowan celebrated her first B-Day. The highlight of the party was the cake. It went something like this:

Rowan inspects the cake

Rowan tastes the cake

Rowan approves of the cake

Rowan takes a minute to consider whether the professionalization of Olympic sports should detract from Phelp's remarkable performance at the 2008 summer games

Rowan enjoys her cake

Rowan ponders what she hath wrought

Not Pictured: the impending sugar rush which kept us partying until 9:45 that night.

Wednesday Update

Change in plans: pediatric oncology had to reschedule Rowan's appointment until Monday morning, so we're back in Riverview for a few days. She is in an absolutely fabulous mood- laughing, playing, walking. We'll try to put up some video or something this weekend. Although we're anxious to begin treatment, we're happy to have a few more days with her while she's healthy and active.

Thanks again to everyone for the words and wishes- we appreciate it! Mary Ann: I am at USF teaching rhetoric and writing for the English department. While I'm sure Doc would be proud, he'd also probably complain about how little English profs get paid!

Tuesday Update

Good news: Rowan's right eye is completely clear. And Dr. Murray assures us that even if a tumor does appear, he'll catch it early enough that it will never interrupt her vision.

The bad news is as bad as we were expecting- which in this case is good. Her left eye will have to be removed. She will undergo chemotheraphy for the next three months, then they will remove the eye. The chemo isolates the tumor and makes it easier and safer to remove. It also is a proactive way of ensuring that the cancer does not spread.

Today Rowan will undergo minor surgery to insert a port for chemo. She's also getting a lumbar puncture and bone marrow treatment (either today or Friday- they tend to hit you with a lot of information at once at these places).

We will be in Miami until Saturday. The best news at this point is: Dr. Murray has a 99% survival rate. We are in good hands.

Update

We've just seen a specialist in Miami- Dr. Murray. He is the best in the world at treating this kind of cancer. He originally planned on operating Friday, but after some preliminary tests has decided to examine/operate on Rowan tomorrow. We are in the best hands we could be in. Murray has the best survival rate in the world.

Tomorrow we will definitively learn whether the cancer has moved beyond the retina to the optic nerve. As it stands, Rowan will likely undergo 6 months of targeted chemotherapy regardless of whether we can save the eye. Murray believes her right eye is clear-- this is the best news we've received all day.

Currently, we're waiting to meet his team. We'll stay in Miami tonight and probably tomorrow. Rowan's appointment is for 6:00a.m. tomorrow. Thank you to all of you who have sent your wishes. Rowan is still in good spirits (although she has had it with waiting for medical experts!). She learned to walk Friday, and is certainly enjoying her newfound mobility.

In the Blink of an Eye

For those who have not heard, our lives changed drastically yesterday. We unfortunately learned that Rowan has Retinoblastoma, a very rare but aggressive form of eye cancer. To give you an idea of how trying yesterday was: we were exceedingly relieved to learn that Rowan will only loose her left eye.

We'll be traveling to Miami to see an uber-specialist Monday morning (we leave Sunday night). Rowan's CT and MRI revealed that the tumors are 1) only in her left eye (her right eye seems perfect) and 2) are completely contained within the eye (so the cancer has not yet spread to her bone or muscle- this is extremely good). The doctor will likely prescribe a series of chemo to reduce the size of the tumor before deciding whether to remove the eye. Given the risks of chemo (including facial deformation), Meg and I are in favor of removing the eye immediately rather than attempting to save it. The risks outweigh the rewards.

The good news is that Rowan is feeling fine- she's been without sight in her eye for at least a week now and shows no signs of missing it. She learned how to walk yesterday at the eye specialists. Other good points: she can save half off contact lenses, cannot be drafted, and can always go as a pirate for Halloween (see, in my family, we deal with humor...).

Any Chance its Like a Surgical Strike

As I type, I sit alone in an empty, rather clinical room located in the bowels of human resources at USF. I am here for new faculty orientation with the payroll department. I am eight minutes early... and again... the only person in the room. There are nice... um, hefty... packets arranged on tables. There are cups with different colored markers in them. There are seven white boards. I have an urge to run.

I hope this is like a surgical strike- quick and painless, but I don't think I shall be so lucky... [gasp] someone approaches!