Thoughts From Eric Archive

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.

Some of our Cleveland friends have organized “Team Becca” as part of the 2013 Northeast Ohio CureSearch Walk for Children’s Cancer to be held in University Circle on the morning of Saturday, September 28.  If anyone would like to join and walk the 1.75 mile course, please do; if you can’t join as a walker, please consider making a small donation to the team as a show of support.  It would be much appreciated.

Kat and I hope to participate in the walk with Rebecca, but we won’t be able to commit until a week or so before the event.  Basically, until we know our exact schedule and how Rebecca reacts to the sedation-and-radiation-and-chemotherapy regimen, we can’t commit to much of anything.  But our friends will be there, and hopefully some of you will be there (either in person or in spirit), and if at all possible we’ll be there too.

• Team Becca was published on Thursday, August 29th, 2013.
• It was assigned to the Cancer, General, Personal, and Rebecca categories.
• There has been one reply.

All things considered, we were incredibly lucky that Rebecca’s brain tumor emerged on vacation.  We were incredibly lucky in so many ways that it almost defies believability.

For starters, because we were in New Jersey, Rebecca was transferred to The Children’s Hospital of Philadelphia, which is very likely the absolute best place she could have been treated for her particular problem.  I sent a copy of her MRIs to a cousin of mine who’s a highly respected radiologist, and he showed it to a colleague, and they both can scarcely believe how much of the tumor was removed.  It’s essentially a total resection in an incredibly risky and difficult-to-reach area of the brain.

Anywhere else, with any other surgery team, there might have been more of the tumor left in her head, leading to significantly lower odds of long-term survival.  Furthermore, CHOP is one of the few places in the country with a proton radiation facility, which allows us continuity of care in a great program, and they are participating in a study of chemotherapy/radiation therapy combinations that could raise the odds even further.  This is the place that will give her the best shot at complete elimination of the cancer.  If we’d been at home, it’s incredibly unlikely we’d have come here.  Even if it had been suggested, Rebecca would have been far too ill to transport so far.  Instead, we transported her within range of CHOP in the family minivan just before (or even as) her symptoms began to manifest.

Just as lucky is that we were on vacation and so able to pay closer attention to Rebecca’s initial symptoms over periods of time unbroken by work or errands.  We were deeply in tune with what was going on, and so Kat knew when it was time to go back to the emergency room.  That’s where Rebecca’s seizures happened, and the ER staff responded instantly and flawlessly, which means she was stabilized in the minimum possible time.  That very well may have spared her, neurologically; in those situations, every second counts.  If we had been out of the ER, or maybe even in a different ER, she might not have fared so well.  If we had been in Cleveland, given the time that she seized, we might well have been driving her from the pediatrician’s office to the ER.

Then there was the logistical luck.

Kat’s high school friend Lisa, who lives just north of New York City and was already planning to come with her daughter to join us for the second week of our vacation, was able to come south as soon as she got our call, even before we knew exactly where we wanted her to go.

Even more incredibly, our very good Cleveland friends Gini and Ferrett were on the road, on their way to a convention in New England, and were paying the toll at the Tappan Zee Bridge when I called them with the news.  They immediately turned around to head south as well, and arrived at our vacation rental exactly the same time Lisa did.

We sent everyone there instead of Philadelphia so they could take care of our children Carolyn and Joshua, who were being watched by a sitter who turned out to be someone we already knew.  Kat and I had already left for Philadelphia, driven there by the woman who runs the sitter service we’ve always used on our vacations in New Jersey.  We didn’t even ask.  We were still trying to figure out how to get to Philadelphia when she found us a sitter — her own daughter — who could stay until our friends arrived, and then volunteered to drive us to CHOP so we could be with Rebecca, to support her and each other.  Even after all those years of using her service, that evening was the first time we’d actually met in person.

The kids came up to CHOP with Lisa, Gini, and Ferrett the next morning, bringing the whole family together.  Everyone needed a place to stay, and lo: Kat’s cousin Wendy and her family, who live 20 minutes west of Philadelphia, were leaving that same day for a week of their own on the Jersey shore.  They offered their house without a second thought, allowing everyone to stay less than half an hour away instead of five times that distance.

And further, the fact that it was late summer made it possible for more people to come to our without being hampered by the weather or school being in session and so on.  My parents could make the drive from Florida to Philadelphia on a moment’s notice, pushing through the entire 15-hour trip, and stay with us for almost a week.  Kat’s friend Dena could take the Acela down to help out the very next morning, mere hours after we’d arrived at the hospital.  Our friends Jen and Alyx were able to drive from Cleveland to Philadelphia later in the week to give Rebecca’s brother and sister more familiar faces.  Our various friends were able to get Rebecca’s siblings back to the shore so they could finish their vacation, away from the constant stress of the hospital, and they were able to meet up with Kat’s cousin’s family for a night on the boardwalk.

Everything came together.  So much support assembled in so little time with so few roadblocks that it still amazes me just a bit.

All things considered, I’d rather my daughter had never had a brain tumor, especially one so rare, in the first place…but given that she did, we are so, so lucky that it emerged on vacation.

• So Very Lucky was published on Wednesday, August 28th, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been eleven replies.

One of the hardest things for me is that too much of the time, the thought lurks in the back of my head: “What if she dies?”

I think any parent has that thought at specific moments, no matter how hard you try to suppress or transcend it.  The first time your child climbs up higher than their own height, when they get enthusiastic about sports, when they take their first solo plane flight, when they start learning to drive…you can intellectually know the odds, know that the chances of them being killed in the act of crossing the street or backpacking across Europe are infinitesimal, and yet that primal thought surfaces.  Maybe just for an instant, but still, it’s there.

And you let them do it anyway, because the alternative is to forbid them doing anything even slightly dangerous, keeping them at home and at your side at all times until their life becomes indistinguishable from the backstory in a Stephen King novel.  You have to let them live their life and hope that it all works out, that they don’t roll a long string of ones at the craps table of life.  You have to let them live.

But what if she dies?

Rebecca’s odds are better than we had feared, not as good as we’d fervently hoped: a 50% chance of surviving the next five years.  Imagine that your child’s life depended on a coin flip.  That’s where we are.  Even with the best doctors and care and technology in the country or possibly even the world, her chances of making it to her tenth birthday are basically the same as the chances that your football team gets to choose between kicking or receiving.

In order to maximize her chances of surviving, we have a lot of decisions to make.  The first was where to take her for proton bombardment.  That one seemed pretty easy: in fact, we made it in the room where they delivered the diagnosis, without needing words to come to consensus.  CHOP is the best, or one of the best, and we can get her started as soon as possible, denying the leftover malignancies extra time to continue their spread.

The decisions when we get home are a great deal more difficult.  We have three excellent health care options in Cleveland — The Cleveland Clinic, Rainbow Babies & Children’s Hospital, and Akron Children’s Hospital — but all of them are imperfect in different ways.  None of them immediately stands out as the clear best choice.

We’ll tour and interview with each of them as soon as possible, but what it comes down to is that we have to pick the facility that we believe will give Rebecca the best chances, both over the course of chemotherapy and followup examinations as well as if she suddenly requires more brain surgery.  How do we weight those factors?  How can we know what we’ll need two, three, four years from now?  What if we guess wrong?

What if she dies?

Every decision a parent makes — buying a crib, allowing a piece of chewing gum, signing up for sports camp, going to the swimming pool, handing over the car keys — is a gamble with their child’s life.  It’s just that most of those decisions have very, very long odds, some of them close to infinite odds, against losing.  Now Kat and I find ourselves in a situation where the odds are not at all long, where they in fact are horrifyingly short, and we are tasked with keeping them from getting any shorter.

And if you want to know the real, true hell of this new phase of our lives, it’s this: we can ace every decision, increase Rebecca’s odds at every step, give her the best shot of all possible shots at living to be an adult…and still, after all that, the cancer might survive the radiation and the chemotherapy, hiding a few malignant cells in critical brain tissue until we’ve run out of things to kill it with, and then re-emerge to kill her instead.  We could make all the right moves, and she could still die.

Of course, that happens every day, randomly or otherwise.  Parents who make no wrong safety decisions still lose children.  That possibility, however small, is part of parenting, and you go into the job knowing that.  You do what you can to properly balance safety and independence, and past that, all you can do is hope.  Even, or perhaps especially, when the odds shift far enough to throw the whole mechanism of randomness and luck into painfully sharp relief and turn what used to be routine, slightly banal decisions into long and sleepless nights.

In the end, all we can do is hope that the coin flip comes up in Rebecca’s favor.

But what if she dies?

• What If was published on Monday, August 26th, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been twenty-five replies.

This is the stage of recovery where things are both going great and deeply difficult.  (Because alliteration.)  And the two are inextricably intertwined, so that even the difficulty becomes a sign of the progress.

Although we don’t have exact start and end dates yet, since that depends on when they can get Rebecca’s brain mapped in excruciating detail, we have a treatment plan that feels pretty solid.  That in itself is a relief, as was learning that CHOP is in-network for my health insurance plan.  That’s huge, considering what kind of treatments and care were required to save Rebecca’s life.  Had all this been out of network, well, let’s just say that at a minimum I would have had to restart my retirement planning from scratch.

Rebecca has improved greatly over the past two days, and as of today was taking unassisted steps, holding a hand for balance, walking slowly from bed to hallway and back.  Her fine motor skills have pretty much come back up to par: her handwriting looks not a bit different than it did two weeks ago.  What she needs now is strength, a bit more gross motor skill recovery, and to re-establish her balance.  And that last might be a function of strength.  It’s easy to lose your balance when your legs are trembling from the effort of holding up your weight.

As her strength returns, though, she has enough spare energy to start processing what’s happened to her and how her life has changed from what she remembers.  All sorts of fears and resentments bubble up, as they should, and can trigger epic temper tantrums that require a great deal of patience to weather, diagnose, and treat.  We’re trying as hard as we can not to medicate her into quiescence, because that’s not her and it’s not our way.  We want her fired up and ready to fight, her old fierce self.  At the same time, we don’t want her to unnecessarily suffer real, physical pain.

It’s a tough line to walk as a parent, because we are determined not to baby her, but at the same time we have to constantly make snap judgements as to whether or not she’s really at her temporary limits, or if she’s using her situation as an excuse to be a defiant five-year-old.  Then we second-guess our snap judgements.  Sometimes we make the wrong calls, and learning to accept that is part of our adjustment process.  We keep moving forward just as she does, slowly relearning how to do what had become second nature, stumbling, regaining our feet, and taking another step, and another, and another.

In between the storms and second-guessing, Rebecca is her old impish self, constantly smiling like she has the world’s greatest secret on her lips, laughing quietly at the funny movies she watches, making silly faces at the nurses, and generally charming the hell out of anyone she meets.  She is herself, something we had feared (with good reason) might not be the case.  That alone is reason to celebrate.

• One Step At A Time was published on Saturday, August 24th, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been thirteen replies.

A lot of people have asked how they can help us, and the truth is that right now, I really don’t know.  Even more importantly, I don’t need to know.  Throwing me a thousand things to think about is not going to help.  We love and cherish and appreciate all the expressions of support and caring more than most of you can imagine.  We are helped by knowing that you want to help.  If we knew of a specific way you could help, I’d say so, and will.  We’re just dealing with a lot right now.

We have a meeting today with a hospital social worker who will give us information on things like the Ronald McDonald House and other nearby short-term housing solutions, and whatever other things they know we need to think about that haven’t occurred to us yet.  We’ll deal with those things as they come.  We have to deal with everything as it comes.

Some people have asked if there’s a way they can donate money.  Please, not yet.  I literally do not know how much all this will cost, not even within a rough order of magnitude.  Maybe it will be a few tens of thousands of dollars that we can easily pay on a plan — hospitals are quite used to that sort of thing.  Maybe it will be hundreds of thousands of dollars, or well over a million.  I have not the first idea, and as of this moment I really don’t care.  Believe me when I say that if we need financial assistance, I will ask for it.

I realize that I’m effectively asking everyone to stay in a holding pattern, and that’s kind of sucky when the instinct is to jump into the breach and help, but that’s what we need at this moment in time.  Be ready and willing to help when help is needed, and hold us in your thoughts.

• Holding Pattern was published on Thursday, August 22nd, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been twelve replies.

Rebecca has grade 3 (anaplastic) astrocytoma.  With six weeks of proton radiation bombardment of her brain and a year of mild chemotherapy, she still has a 50% chance of dying at some point in the next five years.  Because if, after all that treatment, another tumor emerges, there are no more treatments that will help.  We will only be able to watch her die.

On the other hand, if she survives those five years, her chances of growing to adulthood are excellent.  In the meantime, her quality of life will not be terrible, however long it lasts.

There are very few proton treatment facilities in this country (or any other), but one of them is the Children’s Hospital of Philadelphia.  We have already decided that is where she will receive her treatment, which will begin after two weeks of intensive planning.  I don’t yet know where in Philadelphia we will live for the next two months; not in the hospital, as the radiation therapy is outpatient, and we will be discharged once she regains her physical strength.  I know we will find a place, one way or the other.  For now, she is still in the hospital, and we are trying to face each day as it comes.

Kat and I are still deep in shock.  Carolyn is struggling mightily to cope with everything that’s happening to her sister, her family, and her life.  Rebecca is still physically extremely weak and doesn’t want to know what the doctors said.

Me either.

I don’t have much else to say right now.

• The Diagnosis was published on Wednesday, August 21st, 2013.
• It was assigned to the Cancer, Parenting, Personal, and Rebecca categories.
• There have been thirty-eight replies.