Friday, July 11, 2008

I almost feel guilty...

Nights like tonight amaze me. The Boy and I had a joyful 45 minutes of playing after he got home from temple tonight. He was laughing and giggling - I think I tickled him so much that he wet himself.

Then again, he's a baby and does that well enough without encouragement.

It's so much fun playing with my baby! He's a neat guy, and we've got games and interactions that I can't really describe with words. It's just how we communicate with each other. Tonight, it really worked - he was happy, smiling, laughing and having a great time, right up until he stuck his thumb in his mouth, put his head on my shoulder and fell asleep.

It is SO hard to believe that he has this life-threatening, life-altering illness that - two weeks ago - required the complete removal of a kidney. I know that one of the symptoms of Wilms Tumor is that it has no outward symptoms. Those diagnosed with Wilms tend NOT to show behavior changes and outward symptoms. I, personally, look at my baby with wonder and joy. How can he be this sick?

When I hear "pediatric cancer," I think of those waif-thin children in hospital wards on television. They're all bald (which will happen in the next couple of weeks, I know) and sickly and can't move around on their own without help. They're all coughing and hooked up to IVs 24 hours per day, and clowns and things come visit them.

(...and, according to the Buffy episode from season 2, so do demons. But, I digress.)

When I hear "pediatric cancer," I DON'T immediately envision a happy, smiling baby who crawls around the house and tries to get at the electrical wires and DVDs and books and cabinets that Mommy and Daddy won't let him have. I don't envision a baby that sleeps well (as well as any 10-month old) at night and eats like a horse for the three meals per day that he's given. I guess I do envision a baby that nurses 5,286 times per day, like mine does; kind of.

There's times when I'm uncomfortable talking to people about how The Boy is feeling, because I almost feel guilty that he doesn't match the profile that I've come to expect from watching WAY too much television. I know the bad days are coming - the nausea and vomiting, the crappy-feeling, the lethargy and sickness - even if they're not here yet.

We're through the major crisis. He's recovered - pretty much - from the catastrophic surgery which he underwent. The scar is starting to recede into his abdomen already, and he shows no physical signs of surgery. What's left is the long haul - the long, steady, dreary, unexciting, dangerous, toxic and unrelenting treatment. This will all happen, incidentally, while I'm struggling with a new job (making FAR more money than I'm likely worth) and in the middle of the busiest and most stressful band time in the year (marching band).

We've been telling people, "Thanks for the offer to help - we'll take you up on it in the fall." We will. We'll have to. The days and nights after chemo almost wiped us out last night, and that's when we're both not working and able to nap when required. I'm terrified about what it's going to be like in the fall, with the stress of 80-hour workweeks ahead of me.

But, it's still a little bit awkward, talking about Him right now. "How's the baby with cancer?" "Well, right now, he's great - laughing, playing, active. But, don't worry. That'll change - he'll get worse."

Sigh. I know that that lack of knowledge and that innocence is what makes pediatric cancer SO much more survivable than adult cancer. I also know that I should be counting my blessings instead of waiting for the other shoe to drop. But, I'm a worrier.

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