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I apologize in advance if this one is disturbing for you, but I feel it’s a necessary part of our full story. On Austin’s birthday last week, Mark and I took a moment to look through the photo album that contained images from his first birthday, and to reflect for a minute on just how far we’ve come. As we flipped through a few months’ worth of photos, I realized that those of you who started reading after I launched this blog, but never read the CarePage, missed out on some of the most serious days — and most disturbing images — of his and our lives.

So, here they are, in all their gory (“L” purposefully omitted).

This first one was taken the morning of August 1, 2007, our third day in the hospital. You can see that his belly is a bit distended, but not alarmingly so. This was the last moment his skin was unmarked by scars, as he was preparing to go into his surgical biopsy which left him with two inch-long incisions on either side of his abdomen and a Broviac line in his chest:

Sleeping post-surgery with his mama. It was now confirmed that he did indeed have cancer:

And with Caryl. You can almost see one of the scars under his hand:

And with his Gram. Poor sad baby, he held on to that juice box for dear life:

But after eleven days, we went home and he started to get back to normal. The Broviac line under his shirt is what causes all that lumpiness:

Still smiling:

Still playing:


And then things began to change. When he was supposed to be getting better, he instead got worse. Over Labor Day weekend, right after a blast of three chemo drugs, his belly just kept growing. Growing and growing, bigger every day. I literally tied a piece of ribbon around it and measured it on Saturday. It was one centimeter bigger on Sunday. And another on Monday. And by Tuesday, we were back in the hospital:

The next day we learned the truth: the tumor, which at diagnosis was 7 by 7 by 14 centimeters, was now 10 by 15 by 21.

And yet he still tried to smile:

But it wasn’t easy:

And then there are these next ones. Taken on Friday, September 7, 2007, two weeks before Austin’s first birthday and mere minutes before we brought him to the pre-op room for a six-hour surgery that would remove his right kidney and a five-and-a-half pound tumor:

I know, I know. I was there. I saw these images with my own eyes. In my own child. So believe me, I know how bad they are:

And hours and hours later, he was returned to us, nearly six pounds lighter:

And so he was lighter and, we hoped, healthier:

But it was six days before we knew why it had grown so horrifically and a full ten days before he was allowed to eat again. Ten days with no milk, no food, no water, except for the few ice chips I sneaked him one day (which he promptly threw up):

He was a mere shell of the boy I once knew:

Those were the worst days for me. Of my life, I think. But he still managed to smile:

Finally, we got to go home, for five days, where we celebrated his first birthday:

And when those five days were up, we were right back in the hospital, getting ready for another surgery. But this time, Austin’s belly was fat from all that cake:

I know these are sad and I know they’re shocking. But I’m okay with looking at them. In a way, I think it’s good: we should never forget. But that was then.

And this is now:

And we are the luckiest.

I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study protocol we’ve been following, half of the children had a second recurrence (which, not to confuse you, means a third time). But, like I’ve all too often, Austin doesn’t fit neatly into any of the categories of children in that study.

The main reason is that Austin’s initial tumors, on both sides, had that rare rhabdomyomatous differentiation. This is significant in terms of his future prospects mostly because his initial cancer was resistant to chemo and therefore, the fact that it recurred once doesn’t necessarily mean that it beat chemo — which is what makes recurred cancer so much more deadly in the first place. Think about this: if you treat cancer cells with the deadliest weapon known to doctors (chemo) and instead of being destroyed, they instead go into hiding before sneaking back out again, that means they’re pretty darn tough cancer cells. But if you knew that chemo wouldn’t work on them anyway (or would only work on 20% of them as was the case with Austin), and then they returned, it’s a whole different ball game. The cells didn’t actually beat the chemo, they just didn’t respond to it.

Add to that the fact that his most recent cancer was not rhabdomyomatous at all but instead a regular old Wilms tumor and things get even murkier. Did it morph? Was it maybe smarter than the chemo and it somehow changed over time? Or, because we were watching it so closely and frequently in those months and actually saw it grow over that two week period and then quickly swooped in and removed it, did we just catch it so early that it hadn’t yet had the chance to evolve from a classic Wilms into a rhabdomyomatous Wilms?

I know, blah blah blah, I’m sure I’ve lost a lot of you with that damn “r” word again. The important thing to glean from this is that Austin’s recurrence doesn’t mean the same thing as some other child’s recurrence.  Unfortunately, what it does mean remains unknown to all of us. Quite frankly, we don’t know whether his chances are made better or worse thanks to his unique situation.

Which brings us to the other major question I’ve heard and that is, how likely is this cancer to spread if it does return? A very important question because if it never spreads, then taking the kidney out preemptively isn’t even necessary. Why not just roll the dice, hope for the best and then if (if!) some small shadow appears on a scan down the road, we remove the kidney then? If it’s not gonna spread anyway, we just scoop out the whole kidney (“whole kidney”? ha!), tumor and all, and start dialysis then, when we must. One problem with this is that it resets the clock and we then have a full twenty-four months before transplant (as opposed to, say, twenty months if we remove the kidney electively in August). The bigger problem is the danger of the cancer spreading. If we leave the kidney in and cancer returns and then spreads beyond it to Austin’s liver or lungs, then we’re in real trouble. Like, you know, real trouble.

Which brings us back again to the rhabdomyomatous question. That variant is highly UNlikely to spread (and Austin’s certainly never has), whereas classic Wilms is more likely to spread. So, like I just asked, was his most recent cancer really classic Wilms or would it too have morphed into a rhabdomyomatous tumor over time?

I know, your head is hurting now. Imagine how mine feels.

So this brings us back to our current — and ongoing — predicament about what to do next. So many of you have expressed what a terrible position this is for me and Mark to be in, how horrible and unfair it seems to place this sort of responsibility in the hands of parents. And in many ways, I agree: I hate the choice we have in front of us.

But I also believe that we are the best ones to make it. In the absence of clear medical and scientific information, no doctor has the answer right now. They have opinions and recommendations, but they don’t know what the right choice is. And neither does Mark. And neither do I.

But we do know Austin. And we know, beyond a shadow of a doubt, that no matter what we do, we will do it with Austin’s best interests at heart. We are his parents. No one on earth could handle this decision more carefully than we will. No one on earth could care more about its outcome than we do.

So who better to make this decision than us? In whose hands could his fate possibly be more secure than ours?

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