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Thanksgiving

This is an even more thankful holiday for us than usual.  We’ve always been thankful for our good fortune, friends, and family, but it was two days ago that we got the strongest indication yet that our daughter Rebecca will live to see next Thanksgiving, and very possibly many more beyond that.

Tuesday morning we got up very early to deposit Carolyn and Joshua with friends, and then took Rebecca to Hillcrest Hospital for an MRI.  This was our first interaction with the radiology staff there, though by no means the last, and Rebecca as usual charmed the socks off of everyone there.  After she recovered from the anesthetic, we got lunch, picked up a few groceries, and then headed to the main campus of the Cleveland Clinic to get the results of the MRI.

To put it baldly, the results couldn’t have been any better.  The MRI showed no sign of renewed tumor growth, no regions that appear abnormal, not even signs of swelling secondary to cancerous activity.  This doesn’t mean that she’s cancer-free: nobody can say that with certainty.  As I wrote two weeks ago and XKCD beautifully illustrated a couple of years ago, there can be never really be certainty except of the terminal kind, but what we have now are strong signs that Rebecca’s cancer actually can be eradicated.  What that means is that instead of hospice, we can start a year of chemotherapy in an effort to make certain that the astrocytoma doesn’t return.  The normalness of the MRI, and the particular pattern of side effects she experienced from the first round of chemotherapy, mean it’s reasonable to feel hope.  As a friend put it, this isn’t the light at the end of the tunnel, but it means that there is a tunnel.  A long and difficult tunnel, perhaps, but nevertheless a tunnel that might one day yield to daylight and open skies.

And so we’re thankful for the nurses and doctors that have shepherded us through one of the most harrowing periods of our lives.  Without them, Rebecca would already be dead.  We’re thankful for the medical research and science that made it possible to remove so much of the tumor and target any remaining cancerous tissue.  Without them, Rebecca would be dying.  Instead, she is still as sparklingly alive as ever, and we have hope again.

We‘re thankful that we have the means and the opportunity to fight for our daughter’s life.  We’re thankful for family, who were there, and will always be there, when we need them.  We’re thankful for all the people who have supported us through the past several months, bringing meals to our house, ferrying our kids to school and activities, and doing the organization work to make sure it all happened.  We’re thankful for the Cleveland Animal Protective League, where we adopted a three-month-old shorthair tuxedo kitten yesterday.  We’re thankful to be together under one roof, and not under a cloud of grief.  We’re deeply, profoundly thankful.

A happy Thanksgiving to one and all, whether you celebrate a specific holiday today or not.  May every day be an occasion to be thankful.

Hoping for Uncertainty

With a lot of cancers, including the cancer that Rebecca has, the best you can hope for is an ongoing state of uncertainty.

At the moment, we’re in our month-long break.  The purpose behind this rest is to let her brain settle down from six and a half weeks of radiation treatments.  That’s enough time to let any swelling subside.  At the end of that break, just before Thanksgiving, she gets her first post-proton MRI, in order to establish a baseline.

The very best result we can hope for is to not know if there’s still cancer in there or not.  If her MRI looks clear, if all the structures look like they should and the brain tissue looks relatively undamaged and there’s nothing new and deadly, then all we know is that there is no evidence of cancerous growth—but absence of evidence is not evidence of absence.  Wondrous as it is, medical science has not yet developed imaging with enough detail and discrimination to pick out cancerous cells hiding among healthy cells.

The other result, the certain result, is that we find out, from seeing a tumor or other significantly abnormal result, that the cancer is still there and very aggressively attacking our daughter.  In that case, we’ll most likely be put in touch with hospice services.

Assuming that the baseline MRI and the ongoing blood tests show nothing obvious to worry about, we will proceed with an aggressive chemotherapy regimen.  As we do, every couple of months, a new MRI will be taken.  As with the baseline, the point of these MRIs is to make sure no tumors are growing in spite of the chemotherapy.  If not, we continue with the treatments, hoping to kill whatever microscopic bits of cancer might still be there, hidden between the neurons of her brain and the pixels of the images.

All the time wondering if all the cancer has already been killed, and we’re just pouring more chemotherapy agents into her to no purpose, like firing artillery barrages into a city long since abandoned by enemy forces.  All the time knowing that we can’t take the chance of stopping too soon, just in case there’s even a single cancerous cell left.

After a year of chemotherapy—assuming we make it that far—then we decide whether we should continue further, or call a halt.  I can’t imagine what we’ll be feeling by then, how we will bias ourselves.  Partly because I don’t know yet how the chemotherapy will affect Rebecca, so I don’t know what we’ll be feeling after a year of side effects.  Maybe we’ll be ready to take any chance to end the suffering of side effects.  Maybe we’ll be ready to take any chance to make sure all her suffering was not in vain.  Or maybe there won’t have been much suffering; everyone has a different reaction to the drugs, and some people have very few side effects.  I can’t know until then.  Assuming we make it that far.

After the chemotherapy is finally done, whenever that happens, then Rebecca will still get regular MRIs, all with the same purpose: to make sure nothing malignant is growing.  Every three months for the first couple of years, then maybe every six months for a few years, and then, with any luck at all, every year for the rest of her life.  And always, every time, the best possible result will be this: as of now, nothing has gone wrong.

I have lived with this exact uncertainty my whole remembered life, so this is not as difficult for me as it might have been, but I’ve noticed that this is the facet of our future that seems to horrify people the most.  I think most people have a vague sense that cancer is a disease that can be definitively cured—that it comes, it’s attacked with treatments that can be debilitating, and that eventually, if things go well, you can declare that the patient is cured.  That eventually, you can relax into the knowledge that the terror is over.

It’s never over.  You can never relax.  You can only get used to your new, heightened awareness of the horrible uncertainty, and to the probably new and unwelcome idea that uncertainty is and will remain the state in which you fervently hope to dwell, for however many days are left.

Westward Bound

If you can read this, we’re on our way home to Cleveland.  Somewhere on the Pennsylvania Turnpike, at a rest stop or from a passenger seat, I’ve tapped the Publish button in the WordPress iOS app, sending this post forth to tell the word that the second phase of Rebecca’s treatment has come to an end, and we are finally, after so many weeks, on our way home.

Technology has lifted us in so many ways, big and small.  The ability to fly Rebecca to CHOP when she was unconscious and at risk of her life.  The equipment used to remove the tumor that threatened her, the machines that monitored her brain activity, the shunt that keeps her intracranial pressure low, the arterial port in her chest wall, the massive equipment that fired protons into her skull on precisely calculated vectors into a precisely mapped volume at the center of her brain.  The wireless interfaces to the global networks that let us keep in touch with friends and family, watch a movie on demand, research treatment options, buy supplies to be delivered to our temporary residence in Philadelphia, videoconference with our children and parents back in Cleveland.  The ability to draft this post ahead of time and then simply publish it with the touch of a button.

People have lifted us in so many ways, big and bigger.  The relatives and friends who rushed to our side without a second thought, who did what we asked when we asked without hesitation, who came to see us throughout the whole extended process, who organized to feed and support the family we left in Cleveland, and who came in force to walk for Rebecca and for cancer research.  The Philadelphia friends who came to see us for a few hours here and there, who gave us brief breaks away, who checked up on us to see how we were doing.  The wonderful people at the University City Arts League, where Rebecca was able to take painting and dance and hula-hoop classes in the afternoons.  The fantastic staff at Morey’s Piers, who made sure that the one weekend we could have in Wildwood with the whole family was the best it could possibly be.  The incredible staff and even more incredible volunteers who run the Philadelphia Ronald McDonald House, who housed us and fed us and gave us a calm and welcoming space where Rebecca could play with other kids.

The web community lifted us in ways so varied and vast that they very nearly defy belief.  When I put out the first call, you were there, instantly and in force, hundreds of you, replying and favoriting and retweeting and liking and commenting and emailing to show your support, your regard, your care.  So many well wishes came our way, and every one of them helped us.  They’ve continued to help us throughout the process, as people have checked back in or just let us know that they’re still thinking of us.  Because whatever you may think about the efficacy of prayer and warm thoughts and good vibrations and karmic loans with regard to medical issues, there is no doubt that the expression of those things help in this way:  they let those who are struggling to deal with terrible choices know that they have a support network and resources to draw on, should they be needed.  That is a bigger deal than you can imagine, unless you’ve been there yourself.

All those things got us through the first phase, the initial surgeries and recovery; and then through the second phase, the radiation treatment and initial chemotherapy.  We’re headed back to a month-long resting period, a brief window of no treatments… and then the third phase will begin: a year (or more) of intensive chemotherapy that will likely have serious side effects, but offers the best chance of eradicating whatever cancer cells may have survived the resection and radiation.  This will be a deeply trying year, but we will face it in our home, with the whole family together.

So we’re wending our way through the Appalachian Mountains, looming dark against the twilit sky, leaving behind the city that sheltered us while we fought for our daughter’s life.  Ahead of us lies the city that is our home, where we will fight to secure her future.  It makes our path forward immeasurably easier to know that so many of you are there to help us.  We can never thank you enough.

One Week

Assuming all goes according to plan, we have just one week left before the radiation treatments stop and we can go home.  Assuming no delays, next Monday morning we will place Rebecca into the path of the proton beam for the last time. 

In the past couple of weeks, there have finally been external signs of the process.  All along one side of her head, the side where the stream of protons enters her skull at 100,000 miles per second, nearly all the hair has fallen out.  This is a good sign: it means that the radiation is doing what it should be.  The cells in hair follicles, you see, are very much like cancer cells: always dividing.  The radiation and chemotherapy kill cells that are in the act of division.  They don’t discriminate beyond that, so any cells that are dividing the way they should be—say, growing hair—get hit the same as the cells that are dividing the way they shouldn’t—like cancer cells.

When her hair is washed and down and its glorious curly self, you can hardly see the missing area.  Anyone who didn’t know her as well as we do would probably assume the lopsidedness of her hair was a style choice.  It’s only when the hair is braided, as we do each morning to pull it out of the beam’s path, that you can really tell.

As for her personal energy, well, when her hair is down, new families at the Ronald McDonald House think she’s the sibling of a kid in treatment instead of the actual kid in treatment.  She skips and jumps and dances through life just as brightly as ever, playing silly wordplay games, swiping stuff from our pockets and laughing at her own cleverness.  She’s still five, so it’s not always fun and games; imagine a fiercely strong-willed child pushing back against a change of household, never mind a bunch of unwanted medication and treatments and new people all the time, and then add being away from her siblings for weeks at a time.  She has smooth days and rough days, and of course Kat and I also have smooth days and rough days, so the hope every morning is that no more than one of us has a rough day ahead of them.

As of the pre-dawn hours in which we got up to come to the hospital this morning, there were just five radiation treatments left.  Next Monday morning, after she wakes up from the sedation, we will retrieve our car from the hospital valet and head west.  As long as there are no schedule delays that morning, and no horrible traffic delays along the length of Pennsylvania, we should be home just in time for dinner.

Home.  It almost seems like a myth.  We did a Facetime session the other day and when I glimpsed some of the living room and sun room in the background, it took me a second to recognize it.  I wonder if it will take us a day or two to re-adjust to living in our own house.

Two Weeks

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.

Tomorrow and Tomorrow

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.

High-Value Real Estate

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.

Team Becca

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.

April 2014
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