Patchwork

You know how this goes. First I’m in disbelief, then I’m angry and sad and scared, then I grasp at something to hope for. Then there comes (or not) a reluctant acceptance of the ugly truth, followed by that well of strength that has been tapped too many times. Back and forth, up and down, over and over. The roller coaster ride has begun.

Thank you, all of you, for yet again stepping up and offering to walk this tortured path with us. Today was an emotional day as at every drop-off and pick-up and at several places in between, there were long hugs and inevitable tears and many many f-words. I hear and appreciate every offer of help (and I hear and appreciate every f-word). At this moment, there is nothing we need (save that magic pebble), but the time may come when we will accept all the meals and playdates and everything you’ve all given so many times before.

Nothing is certain. This is not yet the worst news. It is simply not the good news we had so fervently hoped for and so completely believed we’d receive. But we have many more steps before we can say for sure that this is cancer and before we know at all what any of this means for Austin’s future.

His oncologist is taking a surprisingly calm approach, considering he usually wants to do more and do it faster. After discussing the situation with Austin’s nephrologist, they now say we can skip the GFR. The fact that his kidney function has remained steady for two years pretty much guarantees a GFR result of 60 or greater. So that’s one small thing off the table. We will instead do an MRI in the next two weeks, perhaps Wednesday, May 16. Mark and I had been thinking we’d do it the week after that, but everyone I mentioned that to gasped in horror and said, “Why can’t they do it sooner?!” I think they probably can do it sooner (they’re working on scheduling it right now), but the truth is that Mark and I don’t really want to deal with the results any sooner than we have to. Usually I’m the one who believes everything will be alright and this time, I feel fairly certain that the next step will involve removing his kidney and I just don’t want to get to that step one single second sooner than we have to. Then there’ll be the chemo issue — which could push the start of the two-year countdown clock back by several months. Of course, none of this is certain, but I can’t stop it from going through my mind.

So, first things first and that’s the MRI, which poses no danger to his now strong kidney and is expected to give us at least a good look at what’s there. Of course, a clear image is not the same as a biopsy, so even that won’t define the “thing” with certainty. But we’ll just take things one day at a time and make the next decision when it comes.

I feel an incredible sadness and a huge weight upon my shoulders. I look at this vibrant boy zooming ahead of me on his bike down the street and it seems impossible. But it’s seemed impossible before. Not ever, not for one minute of one day did having a child with cancer ever seem possible or normal or expected. I feel like we’re piecing his life together, buying snippets of time here and there. Trading in one surgery for three good months. Or twelve rounds of chemo for half a good year. Stitching together these ridiculous pieces, in-treatment time with non-treatment time, a bit of sickness here with a bit of health there, mixing the living in with the dying. Or the dying in with the living.

A patchwork quilt of life, held together by a thread of hope so thin that it at times appears invisible, and yet so strong that it proves unbreakable.

It just has to be unbreakable.