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I know, you’ve been waiting for some big revelation or major announcement after yesterday’s meeting. Well, we’re mulling. No decision yet. Although I will tell you that both of us walked in there leaning towards stopping chemo and both of us walked out leaning towards continuing.

It’s not what we want, of course. More than anything we want to do next week’s chemo and then celebrate being done, empty that marble jar and throw a little party. We want to enjoy our summer free from medicine and hospital stays and transfusions and PICC lines that can’t get wet. We want to pat ourselves on the back, and feel accomplished and confident that we did everything we needed to.

But if we stop now, it would feel more like quitting and I think we’d just be nervous, more nervous than we will be anyway, that what we did just wasn’t enough.

The data supports continuing on with one more twelve-week cycle. Of course, there’s no one quite like Austin in any of the studies, but most children with relapsed Wilms do at least two cycles and the protocol, as you know, recommends six of them. We know we’re not doing six, there’s no way, or even five or four or three. But two seems reasonable and doable, as awful as it may be.

Austin’s nephrologist basically told us to leave the kidney out of the equation. Which is hard to do since that poor little beat-up kidney is at the forefront of almost every decision I make. She said there’s no way for them (or certainly us!) to accurately predict how long it will last or what it will take for it to either recover or wither away. She believes that the “amazing recovery” it showed after December’s surgery was probably a honeymoon period and the recent deterioration is more likely due to surgical trauma (and maybe radiation) than to chemo anyway. It could be finding its new set point and then just sit there, for years even, just chugging along. Or not. But, according to her, chemo will not be to blame either way. She reiterated, in a less direct way, what we’ve heard many times from Austin’s oncologist: that there’s no point in having a kidney without a kid to use it.

A harsh truth, but a truth nonetheless.

Of course, the other truth is that we may have no say in this either way. If Austin’s bone marrow is indeed depleting, as his recent platelet troubles would indicate, we may have to stop chemo anyway.  If recovery between doses takes more than six weeks, then chemo is rendered much less effective and treatment is often halted. We’re not there yet, and may never be, but it is indeed a possibility.

So, we will continue mulling. There’s no rush, no deadline for deciding. We’re awaiting some more detailed numbers from one of the protocol’s authors (the Wilms tumor guru at St. Jude’s we’ve been consulting with all along) with specific outcomes for kids depending on the number of cycles they completed. The plan has shifted and changed many times already and no doubt it will shift and change many times before we’re through.

But for right now, at this moment, it looks like we’re halfway there. Fifteen weeks done out of thirty. Huh. It’s been a long slog already. I’m sorta feeling my glass half empty right now.

I know why Austin enjoys the hospital so much. He has my complete attention when we’re there. All the usual distractions are erased: laundry to fold, computer to check, big brother to care for. Nope, when we’re there, even just for our twice-weekly clinic visits, I have nothing but occasional phone-surfing to draw me away from painting, reading, playing with the little man.

This past Thursday, while Austin received a blood transfusion over three-and-a-half hours, we sat next to each other on a bed in front of an eight-foot window looking down on the construction site six floors below us. We must have sat there “in the sun” for at least an hour, gazing at the forklift and bulldozer driving back and forth across the dirt. Then he sat in my lap on a chair and reminisced about last summer at Chautauqua: “Remember when . . .” he’d start each sentence, recalling boat rides and fireworks and trips to the mini-amusement park down the road.

“We’ll do that again,” I kept saying over and over, already looking forward to our upcoming summer, when cancer could be well behind us. But I know that boat rides and fireworks and trips to the amusement park might not happen too quickly. We might still be in the midst of cancer when summer arrives. We are indeed halfway through the mandatory eightteen weeks of treatment. But those extra twelve weeks loom large on the horizon. The fact that Austin is doing so well, tolerating chemo and bouncing back after each dose, will probably bite us in the ass in the end. As long as his bone marrow hasn’t been totally depleted, we really have no good excuse for stopping treatment in April and will almost certainly continue through July. Ugh.

This protocol, the one designed for relapsed Wilms, actually calls for up to six rounds of the twelve-week maintenance cycle we’re currently in. As I explained a while back, few children are able to withstand the full ninety-week protocol (six 12-week maintenance cycles after one 12-week induction cycle and one 6-week consolidation cycle) because their bone marrow is so completely destroyed.  When we signed on for this treatment plan, we committed to at least one of these six-week cycles and two if Austin was able.

And, of course, as of now at least, he is able. So strong, little Austin, too strong.  If he breezes through the next three doses as he has through the past three, we will definitely be in for the long haul. There’s a part of me that hopes he isn’t strong enough just so we can be done. But, as his oncologist has reminded me too many times, our ultimate goal is not an easy few months or a pleasant summer but survival.

Survival. There’s just no arguing with that.

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