Delayed Intensification

Having a few weeks off of treatment has given us a much-needed break to spend time with Wesley and our new baby Ruth. I had high-hopes for all the things we’d do, and get done, during this time but what it turns out we really needed was to decompress. It also gave me a lot of time to think, which isn’t exactly writing but it sometimes leads me there.

I’ve thought a lot about what Wes is going through, and what it means for us as a family. This isn’t a singular event – it will likely be a central part of our family narrative forever. In the months after Wes was born, I was easily overwhelmed whenever the thought of his mortality would flitter across my consciousness. The thought of him dying someday was at best something I found difficult to process, and more often simply and utterly painful. He’s still the most beautiful thing I’ve ever held close, but his mortality isn’t nearly as remote. The idea that he could still die in childhood is crushing, especially as I get to know him more and more. I’m not even obsessed with this thought – it’s just one I’ve had to grapple with, accept, and then somehow find a way to look beyond. It’s one of those impossible feelings we’ve learned to accept and face, and it’s hard to believe that there may be a time when I can go back to fearing the normal stuff. Keeping this within our immediate family is difficult and isolating, but oversharing is as well.

There are so many of these emotional riddles we’ve had to learn to navigate, even while I often feel like I’m still coming to terms with simply having and discussing feelings at all. The hardest of it to convey is, I think, the damage of the emotional rollercoaster we find ourselves on – it’s not just that we have bad days – those are easy to understand. In fact, at least for me it’s the feeling that even during the best moments the sky could come crashing down. It has already, and yet we’ve been spared so many worse outcomes, which itself creates that sense that our luck could turn. We could wake up on a beautiful spring day, with plans to do so many lovely things, and then find ourselves on the way to the E.R. again in an hour. A friend we have a play date with could have had contact with someone with the sniffles, or a classmate with chicken pox, and we have make smart choices which almost always mean erring on the side of extreme caution. This takes a toll, continuously, and in obvious and subtle ways.

It’s hard to make plans. Hard to keep promises. Hard to convey to others how much you’d love to do something, but how much you don’t want to disappoint either. Difficult to get across how serious his condition still is, and will be for years to come, without being a buzzkill in every conversation. Hard to decide when someone asks “how’s Wes?” how much to share. Hard to figure out if you’re being overly protective, or taking too many risks. Impossible to find the right balance between wanting your child to have a carefree childhood on the one hand, and wanting your child to survive their childhood on the other. You long to talk about your problems, but you also know how impossible they are to process for parents of healthy kids.

All of this is on my mind as we head back to King of Prussia tomorrow to begin Delayed Intensification (DI), the last phase of treatment before Long-Term Maintenance (LTM) begins. DI is, like all previous phases, a series of explicitly described treatments – we have a detailed roadmap, laying out every medication and every procedure for the next several months – coupled with a huge black box of unknowns that represent how he’ll react to each step. The roadmap shows only out-patient treatments, but that doesn’t mean he won’t be hospitalized for any number of reasons. Of the chemo he’s had before, will he react the same way again? Worse? Better? Will he have a serious reaction to anything new? Will the steroids turn him into a monster, or just a big eater? Will he be able to sleep? Walk?

In some ways I think two weeks off reset my brain enough that I’m feeling anxious again, almost like when this was all new. Three weeks ago the prospect of starting DI seemed no scarier than another month passing on the calendar, but with the benefit of rest and decompression it feels daunting again.