Rowan: Is today a sleep over night with Mommy?
Me: I don't know.
Rowan: Well, Mommy doesn't have to go to work tomorrow. So she doesn't have to get up early. So she can sleep over.
Me: Yes, but I'm not sure. We probably have to wait to ask Mommy.
Rowan (tapping forehead): No Dad. We just have to think with our minds. Silly Dad.
Me: "This is the first time you'll ride in dad's new car"
Rowan: "Why does your new car smell like dog poop?"
Me: "That's called new car smell. A lot of people like it"
Rowan: "A lot of people like dog poop?"
...
Rowan: "Why are you laughing dad? Did I say something funny?"
Me (reading Lyotard's Postmodern Condition)
Rowan: "What are you doing daddy?"
Me: "I'm reading a book about why people go to school."
Rowan: "Oh."
Me: "Why do you go to school?"
Rowan: "I go to school to BE QUIET!"
Casey's got a recent post up about how "Emerging Adults" are having difficulty making decisions. Perhaps because no one has ever helped them encounter a question, only fed them answers?
A few people commented on Facebook that Derek Fisher's daughter has the same disease as Rowan. Unlike Rowan's case, they were able to use a radical procedure (injecting chemo drugs directly into the eye) to save his daughter's eye. Even if our doctor used such a method (and I don't believe he does), Rowan wouldn't have benefited from this--her tumor's location would have pretty much eradicated any chance to see out of the eye again.
Derek Fisher contacted us during Rowan's illness to make sure that we were satisfied with our medical care and to inquire into whether we financially needed assistance for her treatment. We responded that we were happy with our care and that we fortunately did have insurance.
Still, his kindness pretty much necessitates that I root for one Laker this postseason. But only one.
Rowan had her medical port removed this morning after being cancer free for over a year. The surgery was very quick (about a half hour) and she is feeling fine (singing along with Dora as I write). It has been a trying 18 months, but this is a big step back towards normalcy. Thanks to everyone who helped us along the way.
Granted, it might be because our daughter is undergoing ridiculously expensive medical treatments, or that, over the last year, my wife and I have seen first hand how insurance companies and hospitals work over err... with...err... people. But watch this:
I'm not saying that there's not some holes in the arguments. But, I am saying that anyone who has had to battle insurance companies can testify to their rigorous (dare I say sophistic) measures.
Its been awhile since I have put up anything on Rowan, and I thought I should share our good news. Rowan has finished her final round of chemotherapy. Hooray!
We've been having some trouble with her temporary prosthetic (as in it fell out, and Megan and I, despite our best wrestling moves, cannot get that thing back in...), but otherwise things are going well. We will have to travel to Miami once every 6 weeks, and then once every three months for the next year. Rowan will be on high alert for the next calendar year--we have to be extremely careful protecting her from infections (infections, even minor ones, still mean a hospital stay). But they'll be no more overnight stays in the Jackson Memorial Pediatric Oncology ward. Let me say that again: there will be no more overnight stays in the Jackson Memorial Pediatric Oncology ward.
Thanks again to everyone who has helped us along the way. The support of family, friends, and strangers has meant so much to us through this whole process.
We are home resting; Rowan managed not to catch my plague. Right now, she's playing outside with gramma (Meg's mom just got here this morning to give us some much needed help). Thanks to everyone for their concern and wishes.
We got great news yesterday--the post-op examinations showed no signs that the cancer had left Rowan's eye. Her optic nerve was clean. This means that we very likely have a cancer-free baby. We're really grateful for that--we needed a win.
Things have gotten much better as the day progressed. We stopped giving her the Tylenol w/ codine and her condition really improved. Codine can cause both constipation and nausea, and she hasn't vomited since last night. She's eating solid food, playing with her toys, and even dancing a little. We're still waiting on the poop, but everyone here is in much better spirits.
Things are still not going very well. We spent last night at the hotel, and Rowan did sleep soundly through the night. She's had a bit of breast milk this morning, but is refusing solid foods (and Rowan never refuses food...). She's also crying constantly. We've stopped giving her Tylenol w/ codine, since codine can cause constipation. As can her chemo drugs. Rowan hasn't pooped since Wednesday, so we've given her some milk of magnesia.
A good sign: in the time its taken me to write this email, she took a bite of watermelon.
It is going to be a very, very long Sunday.
Rowan's recovery has been rough today--she's had a real difficult time holding down food or liquid. At this point she's refusing to take her pain medication or milk of mag (she's also suffering some constipation). We originally hoped to be released today, but its not looking that way. Currently, she's sleeping and has managed to hold down some breast milk for about 40 minutes (if she can hold it down for an hour, we might be able to spend tonight at the hotel rather than at the hospital.... fingers crossed...).
Again, we would like to thank everyone that helped make Friday night such a success. Meg and I have no way of expressing what all your support means to us. Thank you all
Rowan is recovering from this morning's surgery. She is healthy and safe. The doctor saw no signs that the cancer has spread beyond her eye. All news is good news.
We probably won't get to see her for another hour until we see her. Then we'll be heading over to Jackson Memorial for her 4th chemo treatment. We'll be in Miami until Monday.
We're down in Miami for chemo visit number 3. Everything with Rowan's cancer looks good--her tumor reduced to the point that she didn't even require preliminary laser treatment this time. She will lose her eye during our next visit, November 14th.
I can't say it gets any easier, necessarily, to do this, although we have developed a sense of what to expect--essentially we're better at coping. Cancer is difficult; you leave pieces of yourself all over the place--in waiting rooms, along the side of the road in traffic jams, in the grocery store while searching for good string cheese. As the disease grows, you fragment. But, luckily, you meet other people who give you replacement parts in the form of kindness and concern. Thanks to all of those people who help us hold it together.
And can you believe the Sox came back from 7-0 in the 7th? Crazy.
I haven't put anything up recently, but I wanted to let everyone know that Rowan is doing fine after the second round of chemo. She has become a big fan of the Wiggles. Somebody save us (for those who do not have kids, you just have no idea...).
My mom and dad came down to help us with this round. Dad has returned to Plymouth, but mom is still here. Meg and I got to go out for the first time in almost a year last night--good times. My mother also bought her first computer yesterday, so we're teaching her some basics (and by basics, I mean what the space bar does. Seriously). Its exciting for her, and exciting for us to know that she can see Rowan over iChat every night if she wants to.
I watched the last half of the first debate the other night and will say this: I thought McCain did much better than I expected. I was disappointed in Barrack's reversion into very strict partisan politics. His campaign has been so predicated on difference, change, and transcendence that I thought it really undermined his ethos. I want that ethos back (and not the guy forcing discussions of the environment into questions regarding Russian relations--boo, bad form). Don't get me wrong, I'm still voting for him, but I hope he can improve his performance in debate 2 and 3 (which should target his strengths). If I'm worried about anything, its the silent racism underlying this election. The very fact that, the day after McCain stated "the fundamentals of our economy are strong" we suffered the second worse fiscal crisis in our nation's history and the polls didn't shift signifies that Barrack is up against something silent, hidden, and scary. Make sure you tell your students to vote... and tell them who to vote for...
Rowan's story will be featured on Inside Edition Friday night. Megan and I are fairly confident that we're not made for TV, so we're hoping to come out of this looking like semi-capable parents.
Here's a link to find when the show will be on in your area.
UPDATE:
We just found out that Rowan's segment will be on Monday's Inside Edition, not Friday nights.Carry on.
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.
