A Good Year

We believed it was gone. We really really really believed it was gone. Not just that we wished it was gone or wanted it to be gone. It was gone.

And now it’s back.

Dr. Auletta came over yesterday afternoon — you know you’re in trouble when your oncologist makes house calls. We’d already talked on the phone, we already knew. Mark had come home early from work, I had cancelled an afternoon meeting. But we went through the motions with the kids: cutting their fruit just the right way, pushing them on the swings, looking up with an appropriate display of pride and delight every time one of them shouted, “Look at this, Mommy!” I read to them, wondering how on earth I had ever liked The Lorax because it was so god-damned long. I laughed with them and shook my head in wonder at how marvelously healthy they seem.

But Austin is not healthy. The “thing,” the little blob we truly believed was scar tissue or a bit of packing cotton left over from that last surgery in October 07, is actually a tumor. “Another of Austin’s Wilms’ tumors” is how Jeff described it when he called.  There is a lot we don’t know, but what we know is enough. Austin’s cancer has recurred.

And recurrence, you know, is pretty bad. This means that these particular cancer cells are tough, tougher than the rest were, sneaky like they’ve been hiding in there plotting their return, waiting until we had fully settled into our normal lives before rearing their ugly heads again.

But it’s not doing anything right now; it’s not growing and it’s not harming him in any way. So we’re waiting. We’re gathering information first from all the best sources before we develop a plan, a new protocol for moving forward. Jeff sent all of Austin’s files to St Judes and also to the “Wilms’ tumor guru” in New York who’s been following along since the very beginning. Dr. Elder, the one in Detroit who did Austin’s last and trickiest surgery, is coming in on Sunday to look at the slides and see what he thinks he can do. There will be another surgery, that’s pretty certain, but what we need to decide is whether we remove just the tumor or remove the tumor and what remains of that kidney. It depends in part on whether there is more cancer in there and on whether this little tumor is attached to the kidney in any way, something we can’t tell from all the scans. And of course, dialysis looms large once again, something that fills me with dread.

And then there’ll be more chemo and probably radiation this time. It is these thoughts that put me over the edge, that move me from numb disbelief to gut-wrenching sadness. I’m afraid it will change him, all this torture, squash the light out of him, make him a sick child. I don’t want him to be a sick child. And radiation is going to make him sick — he’ll be nauseous and skinny, he’ll be pale and bald, he’ll be sick. My Austin who is not just “okay” right now, not just “normal” — he’s vibrant, he’s wild, he is full of life. He hops from one place to the next, especially after I say “Hop to it, kiddo,” which he takes quite literally. He jumps down the stairs, skipping three or four at a time. And you should see him jump on the bed: he counts as he bounces up and down and at five, he shouts, “Time for funny stuff” and dive bombs onto the mattress, landing flat on his face without ever putting his hands out to catch himself.

He is as alive as they come.

And now this. Mark commented yesterday on how the outside and the inside of him are so totally different, not aligned, like no one told him he was sick so he just moves forward at light speed, living it up, making silly faces, laughing, always laughing.

We have had a really good year. A great year. I don’t mean for that to sound so foreboding or conciliatory like when some old person dies and everyone says, “Well, they lived a long and happy life.” But we have had a really good year. And I am so glad for it. I am so glad he got to be a kid, to be himself, to show us all who he is, before we head back down this road.

We’re not acting fast. This Tuesday, he’ll have a chest CT to make sure it hasn’t spread to his lungs which would be horrible but is very unlikely because he had a chest x-ray just last Wednesday and they’re pretty accurate in picking this up. So that’s an out-patient procedure, just a few hours. And then we’ll wait for word back from all the experts we’ve consulted before we decide what to do. As many of you know, Austin’s case was rare to begin with and it has only become more and more rare as we’ve moved through this. Whatever we do now is going to be brand new, a plan devised for him alone, without numbers and stats to back it up. But the best minds in the country, and probably the world, will back it up. And that will have to be enough.

So we should be home, going through the motions of normal life, for at least a week, maybe two. I’m happy to have this time, although I know it would make some people crazy, like “let’s get in there and do something already.” But I know how good he feels right now and I am in no rush to change that. Instead we’re going to go on lots of outings, enjoy ourselves to the fullest, before we start this journey anew. Plus, we haven’t told them yet, either boy, and it is going to be brutal on Braedan this time. He just knows so much more, he’s so very smart, and he loves his little brother so very much.

You know, I started this blog just two days ago as a marketing tool. I’d studied the industry and knew I needed to generate some media attention and garner a following which would then help me attract an agent and secure a book deal. This was a selfish endeavour. It was about me. I was actually worried about coming up with enough new material to keep people interested and coming back. Jesus, what I would give to be sitting at my computer late at night wracking my brain for clever new things to write about. None of that matters anymore. This is about Austin. It is all about Austin.

We are about to set off on a terrible new journey, one we never wanted to take, one we really believed we would never be forced to take again. And it is going to be hard. We know a lot more than we did the first time, we know our way around pediatric oncology, both literally and figuratively. But this is new ground. I don’t think we can yet imagine the challenges we’ll face, although I lay awake in bed all night imagining them. But we will do this. We will do everything we have to, we will do everything we can.

And we will not lose this child.