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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.

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.

One Step At A Time

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.

The Diagnosis

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.

77 Hours

The days leading up to the discovery of Rebecca’s tumor were, in a lot of ways, just as filled with uncertainty as the days after.

On the day before we left for vacation, Rebecca had her hair tightly braided by a professional.  We went with tight braids because we were headed to the beach, and we wanted a hairstyle that offered some hope of washing some of the sand off her head.  That evening, she complained that she had a headache, so we gave her some ibuprofen and sent her to bed.

Was the tumor already making itself felt, or was it just that her braids hurt her scalp?

The next day, we drove through the Appalachian Mountains on our way to the southern tip of New Jersey.  Halfway through the mountains, Rebecca complained that her back hurt, and shortly thereafter threw up pretty thoroughly.  We pulled over, washed her and her things down as much as possible, told her to watch out the window for a while, and continued on.  After that, she seemed fine, eating normally and fighting with her sister over who got the top bunk in our vacation rental’s second bedroom.

Was the tumor already making itself known, or did she just get car sick?

That night and the next morning, she played on the beach, jumping waves and making sand castles.  After lunch, she lay down for a beach nap, and it went much longer than usual—more than three hours.  We braced ourselves for a rough bedtime, but instead she threw up a couple of times that evening and complained of a headache and sore throat.  Kat took her to an urgent care center, where a rapid test for strep throat came up positive.

Was the tumor already affecting her, or did she just have strep throat?

Given her symptoms and the test result, the urgent care staff prescribed antibiotics and sent her on.  Rebecca came back to the apartment and fell asleep almost immediately.  The next morning, she still felt sick, so she lay in bed and ran to the bathroom a few times to throw up, usually just after she took her antibiotics.  By that evening, she was sufficiently dehydrated that Kat took her to the emergency room to be evaluated and rehydrated.  So Rebecca was evaluated and rehydrated, given some anti-nausea medication, and sent home.

Was the tumor already sickening her, or was she just having a reaction to the antibiotic and/or the anti-nausea medication?

The next day Rebecca was increasingly lethargic and continuing to throw up.  We were feeding her 5mL of Pedialyte by dropper every five minutes in an attempt to keep her hydrated and nourished until she got over whatever was sickening her—we’d started to wonder if she’d caught a virus to go along with her strep throat, as there are several with those symptoms making the rounds—and could start eating food again.  This continued through the day and all through the night.  Every few hours, just as we started thinking that she’d turned a corner, she’d throw up whatever we’d gotten into her.  Past midnight, she started complaining of a headache just before throwing up.  I asked her about common migraine symptoms, none of which she had.  Occasionally, as she lay limp in my lap, her limbs would twitch once, the way they sometimes do when you’re falling asleep.

Was the tumor already disrupting her brain, or was she just exhausted from the vomiting and lack of consistent sleep?

By morning, we decided to switch her to a different antibiotic.  We were guessing, grasping at straws, feeling more uneasily concerned, but not knowing what else made sense to try.  I went to pick the new prescription up from the pharmacy.  While I was gone Rebecca threw up more than her stomach should have contained, and did so repeatedly.  Before each bout of vomiting, she would grab her head and writhe on the floor in pain.  Before I had returned, Kat knew that Rebecca had to go back to the emergency room.

So we went, and Rebecca sat listlessly in a chair with a bucket in her lap.  Eventually we were taken back, and Rebecca was hooked up to intravenous saline and anti-nausea medication.  It seemed to help, but she wasn’t getting any more energetic.  We sat there with her all afternoon, getting sympathetic looks from other patients and their families.  “Such a little angel, it’s a shame to see her here.  I hope she’ll feel better soon,” one said.  Around 5:20pm, I left to reclaim our other children from the day sitter we’d hired.

Just before 6:00pm, Rebecca had a seizure.  She came out of it and was rushed to the CT scanner.  After her scan, I talked to her on the phone, and she sounded really good.  Like her old self, perky and mischievous, better than she had in days.  We said “love you” to each other and hung up.

Five minutes after that, Rebecca went into another, more severe seizure, and didn’t stop.  The ER staff broke into the crash cart, administered paralytic drugs, and intubated her to keep her alive.  I found out as it happened when I took a call from Kat and the first thing I heard was her sobbing voice calling out, “I love you, baby, Mommy loves you…”

I might have died in that moment from the freezing terror that spiked through my chest.

The CT scan showed a mass.  The regional medical center requested a life flight to The Children’s Hospital of Philadelphia.

The total elapsed time from the beginning of that long beach nap to her first seizure was 77 hours.

How little we know, even when we think we know.  Rebecca had a sore scalp from her braiding.  Rebecca was car sick.  Rebecca had strep throat.  Rebecca wasn’t tolerating the medication.  Rebecca had a virus in addition to strep throat.  Every one of these hypotheses fit the available data.  Every one of them was reasonable and backed by the assessments of medical professionals, one of whom was her mother.

Yet somewhere in that progression, what we were really seeing was the emerging effects of a brain tumor, the last thing we would ever have suspected.  Where was that line crossed?  Which of the complaints were what they appeared to be, and which were the zebra-striped thestral of a tumor disguised as an ordinary pony?

We’ll never know, any more than we really knew what we were seeing as it happened.  I have my suspicion, as the title of this post suggests, but I’m going on instinct and hindsight-double-guessing.  I could be wrong.  Maybe it was when she complained about her braids.  Maybe it was months ago, when her usual fiery stubbornness intensified, something we put down to developmental appropriateness.  Maybe it was halfway through the vomiting period, with that effort spiking her intracranial pressure in a such a way that it shifted the tumor into a blocking position, causing the pressure to continue to build and build until she started seizing.

We don’t know.  We never know.

Three Steps Forward, Two Steps Back

As we were warned by many and are beginning to learn the very hard way, this is a journey of many setbacks.

The tumor that had grown in Rebecca’s head, forcing itself between all the most critical areas of the brain, was entirely or almost entirely removed.  It’s mostly likely the latter, since entirely removing the tumor would have meant cutting into brain matter that simply cannot be sacrificed.  So it’s very likely that microscopic bits of it still remain.

There was an initial pathology analysis done, but I’m not going to share the results because we’ve been told that the full workup could tell a very different story.  Apparently, some tumors can look like other tumors at first glance, as it were, and the tumor type and grade that they initially identified is really rather frightening.  Regardless, we don’t know for sure what we’re up against, and won’t for a few more days.  We don’t know how much ongoing treatment she will require.  It could be a lot, a long road of courses of chemotherapy and radiation bombardment that will sear cells and sicken her in an attempt to kill the tumor before it kills her.  Or she might need no further treatment at all.  Not really counting on that last one, though.

The problem is that even with the tumor removed and an alternate drainage path already created, Rebecca’s intracranial pressure is not staying down.  Even worse, the drainage line that extends from the back of her skull cannot be set at too high a pressure level, or else cerebral fluid starts to leak around it onto the sheets.  Worst of all, at least from my perspective, her energy and behavior levels aren’t correlating to the pressure levels in the expected way, which is a real mystery.

So tomorrow morning is another MRI, and the day after that will almost certainly mean another round of surgery—either to reopen the drainage channels in place, or to install an artificial channel that will drain fluids from her brain and dump them in another spot in her body.

Apparently that’s a thing.

Thus she faces her third major surgery in four days, and at this point we can’t even feel like we know that that’s the end of them.  For all we know, she might need a fourth surgery, and then a fifth, and on and on.  Not only are we uncertain about the true nature what grew in the center of her brain, we’re uncertain about when she can finally start healing.  Our daughter’s life is in obvious peril, all while we lack even the most basic information about when and how we can help her fight to keep it.  It is a special form of parental hell, one that cannot be fully understood even by those who live it.

And yet, today she was able to whisper a few words at a time to us through the fog of her exhaustion, telling us what she wanted to drink and responding to questions.  She was able to hold and eat a popsicle without any assistance.  She smiled as best she could at Kat’s silly faces and in response to visits from grandparents and friends.  She played blinking and hand-squeezing games with me for a while.  Later, she was able to kick off her covers and endanger her arterial line.  She was, for all her lethargy, recognizably herself.

Three steps forward, two steps back.  It is progress, but progress of a cruelly exhausting kind.

Lend Us Your Strength

Our five-year-old daughter, Rebecca, is currently between major surgeries at The Children’s Hospital of Philadelphia.  We were on vacation in south New Jersey when what seemed to be a serious bout of strep throat turned out to be a large brain tumor.  She was airlifted from the regional medical center in Cape May to CHOP and is resident in the PICU, as are we.  This afternoon, the surgeons were able to relieve her elevated intracranial pressure by creating an alternate drainage path for the fluids that the tumor had obstructed.  Tomorrow, she will undergo a craniotomy to resect as much of the tumor as possible as well as biopsy it to see exactly what we’re up against.

I do not know, as I write this, where we will be in 24 hours.  The possible outcomes quite literally range from death to complete long-term recovery with no serious side effects.  Everything depends on what they find in her head tomorrow, and how much of it they can remove, and how the removal process goes.  Until we know that, we know only that she is still herself and that she has incredible care here at CHOP.

We are well covered for help.  We have friends and family here to help us and our other children.  But we—me, my wife Kat, Rebecca’s siblings Carolyn and Joshua, and our extended family of relatives and honorary relatives—could really use your support.  Warm thoughts, positive vibes, heartfelt prayers, just keeping us in mind…whatever works for you will work for us.

She is so small, and so strong, and we are so scared.  Any thought you can spare us is more than appreciated.

Update 17 Aug 13: Rebecca’s surgery went very well, almost optimally well.  I’ll post about it soon, when I know more details.  Thank you all so much.

If Harry Befriended Sally

I really want to see a mainstream Hollywood movie, preferably with stars in the lead roles, that goes basically like this:  a couple of single people meet cute, become very good friends, meet and fall in love with other people, and stay very good friends.  The End.

It’s been pointed out to me that this is basically the Harry Potter series, which causes me to applaud J. K. Rowling all over again…but note that I said “movie”, not “movie series”.  That is to say, while I love that Rowling resisted having Harry and Hermione hook up, I’d like to see that same sort of arc played out over ninety minutes, not nineteen hours.

Here are some other limits I would place on my ideal movie:

  • The friends never have sex.  Not even drunken one-night-stand sex.
  • In fact, they never even date.  They hang out and do stuff together, but the way that people hang out and do stuff with people they aren’t dating.
  • Related: neither of them develops a crush on the other.  Their love for each other is that of really good friends, period.
  • Possibly optional: show through various grace notes in the scenes that while these are great friends, they wouldn’t work well as a romantic couple, and that they realize and are totally fine with that.
  • Their friendship is not broken or externally threatened.  It’s okay if they argue and even fight from time to time—friends often do.  Misunderstandings are part of any relationship.  Show those, but don’t make it into some kind of world-shattering drama or seem like they’re going to part ways.  Just normal human struggles.
  • Related: neither of them hates or is jealous of their friend’s choice of romantic partner, and vice versa.  I’m not going to insist they all four become super-best friends, but what we’re looking for here is healthy (if imperfect) relationships all the way around.

In a lot of ways, this would look like When Harry Met Sally… without the sex and the stuff at the end.  I’m not saying it’s exactly that, because it’s been a long time since I saw that movie and there may be other things that would need to change.  But, in a broad sense, that.

Why do I want this?  Because I’m really tired of seeing movies (and TV shows and video games and on and on) that essentially insist that any two people who could potentially fall in love must fall in love.  Or even just lust.  Those things are not requirements of all human interaction, and I’d like to see—even if it’s just once—something that looks like a rom-com, but ends up being something a lot more interesting and true to life.  Even more, I’d like my children to see it.  They see it in real life, but a little extra backup wouldn’t hurt.

If anyone knows of a movie that meets these criteria, whether Hollywood-based or not, I’d love to know about it.

April 2014
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