Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.
Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene. We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months. And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.
The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery. I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.
But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!
That is no way to think.
And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”
No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.