Posts from September 2013

We’re now a full two weeks into Rebecca’s proton therapy and, possibly due to the near-total resection of her tumor and definitely due to the specific chemotherapy regimen she’s using, you’d be hard-pressed to tell that anything is or ever was wrong with her.  Her energy and spirit continue to burn as bright as ever.  She jumps and cavorts and storms like any child of her age and temperament.  Sometimes, it’s very hard to believe that all these things are actually necessary.

Updates have been more sparse of late in part because of the ceaseless parade of specialist appointments and other demands on our time, but also because we realized our eldest daughter is reading what I write, and that’s something I have to take into consideration.  Our family may be split between two cities, but we are still a family, and the balancing act of being a family continues, as it must.

Tomorrow Team Becca is going to be a very strong presence at the 2013 Northeast Ohio CureSearch Walk for Children’s Cancer.  If you’ve contributed to the team, thank you so much; we really, really appreciate the overwhelming support.  If you’d still like to donate or join us, please do!  We’re close to 40 team members and $10,000 raised, and crossing either of those thresholds would be fantastic.

• Two Weeks was published on Friday, September 27th, 2013.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

A week into proton therapy, we’ve settled into a routine.  It’s a much earlier routine than we’re used to, but we’re all adjusting.  Ordinarily I’d qualify that with “about as well as could be expected”, but I don’t know if that’s strictly true.  What does one expect?  And anyway, I think we’re just adjusting, period, no qualifiers.

It all starts a couple of hours before sunrise, when we administer a staggered series of three medications.  Or at least we did; now, for the most part, Rebecca administers them herself, once we’ve managed to wake her up enough.  The first medicine keeps the second from making her throw up, and the third keeps her brain from crashing.  Assuming it’s needed at all, that is; we don’t know, but can’t take her off it long enough to find out.

The mornings are devoted to proton therapy and recovering from the sedation, and then afternoons are a mixture of meetings with specialists and spending time in stores, parks, playgrounds, and so on.  Rebecca is as spunky and mischievous as ever, with only minor physical evidence of possible side effects.

And then, after dinner and some quiet time, we all go to bed.  Kat and I are slowly synchronizing to the new early-to-bed-early-to-rise schedule, which means that we’re a little less exhausted every day.  This is a bigger deal than you might imagine.

That’s the story so far, anyway.  People ask me how I’m doing, and my answer now is always the same: “One day at a time.”  We don’t know what tomorrow will be like, which has always been true, but now we’re very sharply aware of exactly what that means, which was not always true.  Tomorrow a proton beam might rob her of her ability to write, or to remember her last birthday, or to run in a straight line.  Tomorrow might bring a drug reaction that causes a badly itchy rash, or trigger blind-panic anxiety, or make her extremely loopy.

Or tomorrow might instead bring us another day like today, except with the combination of medicine and radiation burning away a bit more of the cancer without noticeable damage to any of the tissue around it, and the rest of the day spent with a strong, willful, laughing little girl.  Tomorrow might be, probably will be, what the past week of tomorrows have been: one more forward step on this new and unexpected road.

• Tomorrow and Tomorrow was published on Thursday, September 19th, 2013.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

Tomorrow begins a long and dangerous road, one we’re lucky to be able to walk at all.

We’re back in Philadelphia to start almost seven weeks of proton radiation therapy, which will attempt to burn away the cancerous cells in Rebecca’s head without burning too much of the brain matter that surrounds them.  That’s the danger: the brain matter in question is the brainstem, thalamus, and fornix.  These are all, in the words of several of the specialists who’ve talked with us, high-value real estate.  Too much damage there could cause serious side effects.  And my use of the word “serious” in that sentence may constitute one of the greatest understatements of my life.

This is why we are undergoing proton therapy as opposed to any other form of radiation therapy: we are told that proton therapy is “more brain-sparing” than its irradiating cousins.  In other words, it’s the technique that gives us the most cancer-burning for the least brain-burning.  Or so we are told.

In all likelihood, “least” does not mean “none”.  Thus the concern about possible side effects; that is to say, neurological damage, which (if it occurs) may or may not be significant, and may or may not be permanent.  There is no way to know until it happens, or possibly doesn’t happen.

These are the dice we are forced to roll.  We must bet our daughter’s cognitive abilities against her continued survival, her mind against her life, and hope against desperate hope that none of the die lands with a skull face-up.

As I say, we’re lucky to have the opportunity to possibly inflict brain damage on our child, because having that opportunity means the cancer is weak enough that there is a decent chance of eliminating it completely.  If the doctors can do that, she can actually grow up and learn to cope with whatever side effects there might be, or maybe even have her growing brain interpret the damage as deficit and route around it.  She will be able to become whoever she will, and if that isn’t who she would have been without the cancer and radiation, well, that’s unescapable now.  Even if there are no physiological side effects at all, she will still never be who she would have been.  This whole experience will profoundly shape her, and the rest of us as well.

All of which is really unremarkable, in its way.  We all extinguish an uncountable number of possible future selves every day of our lives, and never mourn.

As I type this, Rebecca is unwinding from the long drive here with a favorite video.  Part of me wants to go over there, stop the video, and spend all night holding and talking with her.  But she is a spirited, defiant five, and would probably end up throwing a (deserved) tantrum at me for messing with her and boring her to tears and possibly scaring her a little.  Because she is already far too painfully aware of her own mortality, in a way that no child should ever have to experience.  I have no right, and less desire, to force that awareness even further into her life.

We don’t know what lies at the other end of this stretch of the road, but must walk it anyway, because we know beyond doubt what lies at the other end of the other road, the one our hearts want us to take, the one that leads away from proton beams and chemical cocktails and pain and fear and so many unknowns, but also away from the possibility of a full life.

I hope she can one day forgive us our choices.  I hope we can one day do the same.

• High-Value Real Estate was published on Wednesday, September 11th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been seventeen replies.