Friday, January 27, 2006

Hard battles, hoping for an easy war

NOTHING is easy. She's still got the canula (thingie in the nose), still has the Foley catheter, still hooked up to all kinds of monitoring devices, ivs, etc. After she tolerated the pedialyte okay, we were given the go ahead to nurse. Now, she wouldn't take the pedialyte in a bottle because she's been exclusively breastfed. Sorry, I didn't train her to a bottle anticipating that she would get cancer!

"Nobody expects the Spanish Inquisition."

Anyway, with a syringe, we got it down her. At midnight, we were free to nurse. Well, nursing a baby with a canula in her nose just AIN'T gonna happen, or at least, not this baby. Took it out. Tried for an hour to nurse. Not gonna happen, not after the whole canula incident. Okay, so bundle up all the wires, hoses and tubes and get her back in bed.

This morning, we were able to nurse (again, each time we have to go through a 3 person ordeal of moving wires, hoses and tubes and HER) ... but she threw it up. Probably because that's what she does at least once a day, having nothing to do with the nursing per se.

Tried again later. Did fine, except we had to give her blood pressure medication, which meant she threw up again. Not an easy one for taking any medicine by mouth, even before all of this. Oh! And mixed in all of this, The Husband is trying to hold an oxygen mask close enough to her that she'll breathe some of it, but not so close that she fights like a wildcat to get it away. Hmmm. Back when we were in college, I don't think that that is quite the way he envisioned getting close to my bosom.

And we're going to start the chemotherapy today. Cross fingers and toes that it goes well. Ideally, they'd wait til she was somewhat back to normal ... but we can't. The tumors are shoving everything up into her chest, making it harder for her heart to work, which in turn affects her kidneys, which already have problems their ownselves since that's where the tumors are residing.

But you know, I can take every battle being a sunovabeech if it means that the overall war is "easy." Do the chemo, get the surgery, be cancer free.

Sounds good to me.

Thursday, January 26, 2006

Tell me again how lucky I am

Okay, I understand the mission behind it, but I'm getting tired of people telling me how "lucky" I am. Yeah, yeah, yeah, I know ... I'm lucky to live in a country where I can get good healthcare. I'm lucky to have a good, close family. I'm lucky that it's Wilm's tumors and not some worse type.

But it's one thing to know this yourself and comment on it, and quite another for someone who is not going through this to lecture you on it. My dear daddy, bless his pointed head, actually said, "If you'd been born when I was, you'd have two dead babies right now." (My first child had emergency surgery for a blockage when he was an infant.)

It has been ONE WEEK since we found out that the happiest baby in the world has cancer in not one, but both kidneys. Yes, the cancer is curable, but guess what? That's only one part of the equation. Killing the cancer has to be balanced with saving the kidneys, saving the heart. I always thought it was a quip when people would say "the thing with chemo is, you hope it will kill your cancer before it kills you." Guess what. It ain't a joke. It is literally true.

Let ME decide how lucky I am, please. And unless you have had a child fight cancer ... do not tell me I'm "lucky."

Lizard Eater

p.s. If another person tells me "this is a good cancer to have," they're going to get ... well, they'll get a mean look. Aw heck, probably not. Okay, then, then ... THEY'LL GET A TOTAL POKER FACE!!! Ha. That'll teach 'em.

Wednesday, January 25, 2006

The Journey Changes


That was the sound, not unlike a record player needle scratching across an LP, of one life screeching to a halt, in order to violently change directions.

Last week, I took the baby in to the doctor. She'd been vomiting some yellow stuff, and one side of her abdomen was swollen and hard. I hoped it was gas/indigestion, worried that it might be a blockage of some kind.

The pedi immediately sent us to get an xray. 15 minutes later, in the car on the way home, she caught me on my cell. Instructed me to instantly turn around. And head for the ER at the children's hospital.

Well, it's a week later. After an ultrasound, echocardiograms, xrays, CT scans and slicing her open to do a biopsy, we know that Little Warrior has bilateral Wilm's tumors in both of her kidneys.

Amazing how fast your perspective changes. You become grateful for such crumbs: we're grateful that it's Wilm's; they have a good rate for cure. We're grateful that they both have "favorable" histologies. We're grateful that the lymph nodes biopsied were clear.

We're profoundly grateful for our friends and family who are enabling us to just concentrate on LW right now, while they take care of the older 3.

And we're learning that just because something is a cliche, just because you know about it, doesn't mean it won't happen to you. 5 levels of grief? Yup. Have been experiencing them all. Incredulity -- a baby with cancer??? That's the most ridiculous thing I ever heard of. Rage at the situation, at the tumors themselves. Especially once I learned that the reason she's never been as roly poly as my others were was because the tumors were gobbling up her nutrition. MY wonderful, homemade breastmilk was being consumed by these tumors? That's like a criminal breaking into your home, stealing your goods, beating up your sister, then eating the birthday cake you made for her birthday. WTF???

Right now, she's recovering from the surgery. Surgery that hasn't actually done anything in the cure, it only provided us with information. Next step is chemo -- hoping to start it either day after tomorrow or the day after that.

Do I sound calm? I guess I am, at the moment. First you cry. And in my case, then you cry more. Then more. Then more. Then more. And then, it's time for the journey to begin.

Journey to ministerial life. It just became much simpler.

Journey to life.