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.