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The Thief of Light

When Rebecca was almost 17 months old, she had her first real Halloween—the year before hadn’t really counted, since she spent the whole evening sitting in her bouncy seat dressed as a chile pepper.  It was a big occasion.  We dressed her in her Tigger costume and sat on the front porch with the bowls of candy we’d prepared for all the trick-or-treaters to come.  She loved candy and was thrilled to be sitting with her big sister and all that sweet stuff, even if we did keep telling her not to eat it.

Right on schedule, the first group of trick-or-treaters came up the front walk.  Carolyn, who loves giving out candy far more than she does receiving it, deposited a few pieces in each bag.  Rebecca watched this whole process very intently.  She watched the kids walk away, and saw that another group was headed up the front walk.  She looked at Carolyn, then the approaching kids, then down at the candy bowl in her lap.  Back up at the kids, then back down at the bowl.

And then she leapt up and took her bowl of candy to a far corner of the porch, hunched over her candy, defying anyone to take it.

Now if you offer her candy, you might get a nod or just a shrug.  Taking it from her elicits no reaction at all.


While she was never a super-chatty child, Rebecca was verbal pretty early and always happy to express herself, especially in disagreement or, really, any other form of opposition.  She was never shy about speaking up, a trait we subtly encouraged even as we tried to direct it.  If she thought you were being silly, she’d say so.  “Well that’s just lame,” she’s become fond of saying in the last few months.  Always with a little smirk, unless she really was angry.  The Brits would say that she absolutely loved taking the piss out of everyone around her, and loved even more that she could get away with it by making her target laugh along with her.

She barely speaks now.  Early in the day, we’ll get a few short sentences in response to questions or observations, but she almost never speaks on her own initiative.  A lot of her spoken answers are a clipped “sure”, delivered in a flat, almost bored tone.  Most of her communication with us is in the form of head shakes, nods, and shrugs.  Toward the end of the day, they become so subtle that only Kat and I can be sure what she meant.


Rebecca was always athletic, running and throwing like a much older child.  Like a boy, we would have said in my unenlightened youth, but it was never really like that.  Like a gazelle, I once thought, knowing very little about actual gazelles.  She just threw hard and well, and ran hard and fast, and loved to do both.  I have pictures of her sitting on a trapeze bar, holding the ropes, and her posture looks like that of a seasoned circus performer, sinewy and controlled and poised to do great things.  She excelled in gymnastics, to the point that last summer they moved her up to an older class, placing her on track to join the competitive gymnastics team.

Now she can barely stand upright.  When she has enough energy to walk, she has the slow plodding gait of a clumsy toddler, weaving in unsteady curves from side to side.  When she reaches for something, always so slowly, her hands visibly tremble.  The most activity we see in her comes from obsessive, repetitive motions, pulling over and over at a loose thread or worrying the beads on a bracelet or picking tiny crumbs of food off a plate.


Rebecca delayed potty training mostly because she knew we wanted her out of diapers.  If we hadn’t encouraged it, she probably would have done it sooner.  But she put it off, and put it off, just because she could.  When she finally did, though, she was done.  There was no night-training period, and hardly an accident.  She just gave up diapers one day, on whatever impulse made her decide to do it, and never needed pull-ups after.

Until now, because she’s lost almost all control of her bladder and bowels.  At first she was mortified, but now the most she registers is a distant sort of anger at us when we change her.  We have to change her several times a day, and she just lies there, staring vacantly at the ceiling until we tell her we’re done.  Then, sometimes, she moves her eyes to look at us and wait for us to help her up.


She was full of energy, our Rebecca.  She was always dancing through life, Kat used to say, singing her favorite songs when there was no music to be heard and making a walk on the sidewalk into a skip-steppin’, butt-wigglin’ festival of joyful movement.

Now she sits inert for hours, staring off into space for long stretches of time.  We have to say her name loudly, and sometimes move her head to face us, before she suddenly snaps back.  Her eyes focus on us, the eyebrows raise a bit in query.  We ask her if she wants this or that, sometimes more than once, before she responds.  Sometimes, if she’s more with it, she’ll sit inert and look at one of us.  When I gave her a bath tonight, she sat up in the tub, but as the water rose, her legs floated upward with it, slowly tilting her body backwards until I had to put a hand on her back to keep her upright.  And the whole time, she stared half-vacantly at the chromed overflow drain cover.  At her reflection in it.  At the person there, who I cannot be certain she recognized as herself.


Everything we felt so fortunate to have kept, all her intact neurologic function and physical health and vitality, her ineffable sun-bright spark, have been leached away.  She is dying by slow millimeters, sinking further and further into a miasma of lethargy both physical and mental.  All her emotions crushed flat by the rising pressure in her head.

For all that, she is still Rebecca.  She shakes her head no when she knows we want her to nod yes, and if there’s no smirk to go with it, maybe we can see the faintest echo of a crinkle around her eyes.  When we verbally fence her to the point that no isn’t an option, she just looks at us as if she has all the time in the world to wait out our interest, her eyelids slid just a fraction shut to register her disdain for our feeble attempts to outwit her.

At bedtime, Kat read Rebecca “Madeline”, a favorite they’ve long shared.  Rebecca was so drained that she was basically asleep before we put her in bed, but as Kat started reading, Rebecca’s eyelids slid partly open, her eyes rolling a bit before the lids fell shut again.  Her eyes kept cycling through this, over and over, as Rebecca fought to stay awake enough to hear her mother read her a beloved bedtime story.  She kept fighting until the closing passge:

“Good night, little girls!
Thank the lord you are well!
And now go to sleep!”
said Miss Clavell.
And she turned out the light—
and closed the door—
and that’s all there is—
there isn’t any more.

And as the last syllable passed Kat’s lips, Rebecca’s eyes stilled and she sank deep into sleep.


She lies sleeping on her back, her arms at her side as though not just asleep, but actually unconscious.  She has always been a side-sleeper, ever since the day she was born.  Now she lays inert, her head straight on her pillow, as if rehearsing for the casket she will never occupy.  But when a friend came in to give her kisses, she turned her head slightly, her brows drew together a bit in annoyance, and she folded defiant arms across her chest—still sleeping.

Her pulse is still strong and regular, and her breathing is slow and steady, the calm notes of a child at rest.  She relaxed her arms a while ago; they still lie across her chest, but separated a little bit.  Her jaw has stopped constantly working in her sleep, another new symptom we don’t know how to interpret.  Maybe she was dreaming of chewing gum, one of her favorite things in the whole world.  Maybe it was something very different, and much worse.  It still happens every now and again.

Earlier tonight, I was convinced by all these little clues, and a hundred more, that she would die tonight.  Now I’m not so sure.  The slow rhythm of her breathing gradually carried me from stupefied terror to a quiet reflection.  Now, as I stand guard over her sleeping body, I can look at her still, beautiful face without fear.  I can believe that she’ll wake tomorrow, no more herself than she was today, maybe even a little bit less so, but still going.

Still fighting to stay awake, stay alive, stay with us.

In Shock

Today’s MRI showed that the CT scan two weeks ago was inaccurate.  The tumor has grown significantly, and two of the flare sites are larger.  We’re out of the p28 study.  There are no other studies we or our doctors know of that can help.  Surgery is off the table.

Rebecca has a few weeks left at best.

We’re starting steroids to reduce swelling in her head, in hopes of restoring her to something like her old self.  And we will make whatever time is left as fun and amazing as we can for Rebecca and Carolyn and Joshua.

I built a memorial page for my mother, eleven years ago.

I’m not ready to make one for my daughter.

Stress Fractures

As word of Rebecca’s diagnosis spread throughout our network of friends and acquaintances, we are told, more than one person said, “That’s why she was placed with the Meyers.  If anyone can handle something like this, it’s them.”

It’s flattering, I suppose, to be thought of that way.  Certainly it’s better than having people say, “Oh crap, that’s about to be a Category 5 train wreck!”  But how many couples were thought of the same way we were, and ended up separating?  Do they get marked in the false-predictions column, a lesson that we don’t know other people as well as we think we do?  Probably not.  Selection bias runs strong, especially when it comes to our assessments of others.  When our guesses about other people are right, we take it as proof of our insight; when they’re wrong, we tend to shrug it off as “people change” and forget that we’re often wrong about other people, never mind ourselves.

What concerns me is that this kind of thinking can easily lead to thinking that those who face crisis and stay together are strong, wise, noble—and that those who don’t, aren’t.  It makes a morality play of how people cope with events largely beyond their control, which is unfair no matter how things turn out.

After all, it’s not actually the stress of a crisis that drives people apart.  What breaks a relationship is how the people in it react to the stress, and (even more importantly) how they react to each other’s reactions.  Under stress, and particularly under extreme crisis, we are tested in entirely new ways, and our legitimate and honest reactions may or may not be acceptable to our partners.

To pick an example that didn’t happen, suppose that Kat and I had disagreed about where to take Rebecca for proton therapy.  One of our other choices was Bloomington, IN, about two hours closer to home than Philadelphia and definitely closer to several of my relatives.  Suppose I had decided that was where we should go, and Kat had decided that Philadelphia was best.

Already, that’s the seeds for a major conflict, because it is, in a very real sense, a life-or-death choice.  It’s not like arguing about where to go for dinner.  It’s a fundamental disagreement over a fundamentally critical choice.

Now, suppose that one or both of us reacted to other’s decision with outrage, panic, even scorn: “How could you think that way?  How could you endanger our daughter like that?”  And been met with outrage over the outrage, if you see what I mean.  Both of us being unable to understand how the other could act and react in such a way, when the right answer seemed so obvious.  That’s a fracture that will not easily heal.

Or, to pick another example that didn’t happen, suppose one of us had felt that they couldn’t stay in the PICU ward with Rebecca as she lay half-conscious, waiting for surgery after surgery.  Suppose one of us had stayed in a nearby hotel.  You might feel an instant, instinctual contempt for such an act, even knowing that it didn’t happen in our case.  We both stayed by her side non-stop, to the point that people started gently urging us to take some breaks away.  On rare occasion, we actually listened.

Come back to that contempt, though—how could a parent run away from a sick child?  Yet some parents do, and to judge them for that is contemptible in its own right.  Perhaps they know their anxiety, terror, and anguish would be so amplified by staying that they would do more harm than good.  Perhaps they know they would break down, become almost catatonic and unable to help anyone.  Perhaps they know they would go effectively crazy, and endanger their child and themselves.

Whatever the reasons, suppose one of us had stayed away.  How would the other have reacted to that?  With compassion?  Sympathy?  Feelings of betrayal?  Scorn?  Contempt?  Righteous anger?  All of the above?

Or more recently, when I cracked and had to set a limit for my own good, what if Kat had been unable to accept that limit?  What if what I needed was the exact opposite of what she needed, forcing us to choose which one of us didn’t get what they needed?  That sort of conflict can easily sow resentment, and resentment can easily become anger and contempt and worse.

It’s pretty easy to see how, no matter how deep their love, a couple might split up over such differences.  Maybe not in the throes of crisis, but sooner or later.

Had we had split up, people might have said, “Oh my, I guess they weren’t strong enough to handle it after all.”  That would sound true, but it would be a lie.  You could have the two strongest people in the world split up just because they can’t accept how the other deals with a crisis.

This really shouldn’t come as a surprise, even though it so often does.  It’s astonishing enough that any of us can find someone who’s sufficiently compatible to live with us full-time, with all our quirks and foibles and failings, someone who can accept the way we hang the toilet paper roll, squeeze the toothpaste tube, and load the dishwasher.  To have that same someone accept, let alone admire, the way we react to extreme crisis… that’s luck so incredible as to defy belief.

I’m not saying anything your local therapist or religious leader doesn’t already know.  They see this play out over and over, year upon year.  I just want to remind the rest of us that it isn’t strength that keeps a couple together in the face of crisis.  It’s having the luck to remain compatible under the most extreme pressures.  Like any complex interaction between two complex systems, the outcome is fundamentally unpredictable.  If an unresolvable incompatibility is uncovered, it doesn’t mean the people involved are weak or undeserving.  It just means they’re people.


(Just in case anyone takes this as some sort of veiled announcement, Kat and I are not getting nor plan to get nor have any expectation of getting a divorce.  We both hope it will stay that way—a point of compatibility all its own.)

Cracks Appear

I cracked last night, and I mean that two senses: that of a structural crack, and a crack of the whip.  Over something admittedly important, yet still not immediately critical, I just lost it.  Angry lost it.  I yelled at my wife and child, at the top of my lungs, my voice cracking, venting frustration and rage.  I ended up leaving the house for a while, right in the middle of bedtime, because if I’d stayed I would have kept making things worse.

Part of me feels like I failed them and myself, because I was adding to the stress and upset of loved ones.  It radiated outward, a wave of anger passing from me to them and from them to others in the house.  We don’t need any more upset than we already have.  I shouldn’t have been the flashpoint.  I expect more of myself.

But more of me, maybe most of me, knows that strength always has its limits, and that last night, I reached mine.  There were too many weights from too many sources, and I broke.  It was, perhaps, understandable—the breaking, and maybe even the manner of breaking.

Whether you think the manner of breaking was okay probably depends a lot on the kind of household that raised you.  Some families think yelling in anger is merely a louder form of conversation.  Others think it’s a fundamental betrayal of respect, trust, and love.  The calculus often changes if children are involved, and how involved they were in whatever precipitated the anger.

I’m not here to ask for absolution, nor to be condemned.  Nobody else could do that anyway.  Only I know all the specific pressures involved, the mitigating factors, and the paths not taken.  I’m more than capable of judging myself and my actions (and inactions), and deciding whether I deserve harshness or leniency.  Or some combination of both.  I might err a little bit on the side of harshness; I always have, when it comes to me.  If anything, the past nine months have pushed me away from that.

Afterward, when the kids were (mostly) asleep and I had returned home, Kat and I talked, and I set a limit I didn’t want to set, but had to set.  I said exactly that to her, that this was not something I wanted, that I actually wanted the opposite, but it was something that I had to have, or else I would just keep breaking, day after day.  I asked forgiveness for what I was saying.  Asked us both for forgiveness, really.  She gave me hers.  I’m still working on fully getting mine, but I will.

Why am I even telling you this?

Because blogging is a heavily filtered view of reality, just like any other medium.  Here, I choose what to share, what to hold back, and what to lie about.  I do my best to avoid the lying, but to some extent it’s unavoidable, because I’m not going to record every conversation and every incident in precisely the way it happened.  Not even documentaries do that; every jump cut is a falsehood, by omission if nothing else.

It’s too easy to edit out the rough patches.

So many people keep telling us how strong we are, how amazing, how incredibly we’re coping with all this.  There’s a sort of imposed romanticism about it.  I’d always noticed, before we had cancer or even kids, that stories of people who discover they’re dying always get an aura of nobility applied to them.  In the shadow of death, the victim somehow always attains a special glow, one that spreads to those nearest them, bathed in a light of wisdom and clarity and rightness.

And I’ve fed it.  I’ve fed that aura in our own story, in what I’ve talked about and how I’ve presented it.  I didn’t consciously set out to do it, but it’s there.  I read back through the archives, and I can see it.  I shared the best parts, and skipped the bad parts; or, when sharing the bad news, did it in a way that made us, all of us, seem strong, amazing, incredible.

Maybe we are all those things, but we’re human.  Flawed, struggling humans, just like everyone else, just as prone to error, just as capable of hurting loved ones with our words and outbursts.  Inside the aura, there is no nobility.  We don’t get a special, knowing inner light.  There is no melancholy beauty, no surplus of grace.  We don’t get bonus abilities.  We have more help than anyone could ever dream likely, all the hundreds people who lend and have lent their hands, their ears, and their encouragement, and still we struggle imperfectly with ourselves and each other and the demands we must meet.

We’re human, with every drop of beauty and ugliness that label carries with it.  The angel and the demon, all rolled up together.

We cry and we crack, inside and outward.  We stumble and fall and fail and flail.  We simmer and seethe, and also we soothe.  We give and forgive.  We hold to each other and hold ourselves tight.  We do what we can, as best as we can, as long as we can.

And when we falter, we patch the cracks as best we can, make our apologies, and try again.  That’s what keeps our failings from making us failures.  We try again, one day at a time.

That’s not noble.  It’s not even all that remarkable.  It’s simply what has to be done, over and over.  Just like everyone else.

Deep in the Forest of Fear

Rebecca’s spark has dimmed, and we don’t know why.

On days we go to Pittsburgh, she sleeps the whole way there, is pretty normal at the hospital, and then sleeps some or all the way back home.  When we get home around mid-day, she usually stumbles to the couch and takes a long nap.  She might have a few normal hours of wakefulness starting mid-afternoon, get energized around dinner and bedtime, and then go to sleep for a full night.  Or she might spend those hours not doing much of anything except lie awake.

On days Rebecca goes to kindergarten, she usually walks there and has a normal morning.  And then, right around lunch time, she usually runs out of steam.  We had to go pick her up the other day because she’d fallen asleep at her desk, deeply enough that normal attempts to rouse her got no response.  (Normal, as opposed to “THERE IS A FIRE WAKE UP NOW!”)  We got her home, and she stumbled to the couch and took a long nap.  Once that was done, she didn’t do much for the rest of the day.

Even when she’s awake, at least half the time she seems distant, disconnected.  Much of the time she’ll just lie on a couch or a lap, not moving much, not doing anything but staring off into space.  You can catch her attention and get a warm smile or an air kiss when you do, but that’s it.  She’s there, and yet not there.  At her most energetic now, she’s much more subdued than she has been in the past.

And we don’t know why.

We’ve ruled out seizures.  The EEG showed absolutely no trace of any seizure activity, even when she just sort of stopped and stared off into space, as she does so often these days.  Everything was completely normal, diagnostically.

We think we’ve ruled out pressure due to tumor growth, given the latest CT.  We’ve moved up her next MRI, and expanded it to most of her body, to see if there are tumors elsewhere, or if the CT somehow missed something.  Maybe a thalamic tumor.  Maybe not.

We can’t definitively rule out a virus of some kind.  Her viral panel was negative, but it’s a limited test.  Everyone in the family has had a virus that drained us, as have some of our friends, but most of us recovered in a few days and Rebecca’s been like this for two weeks now.  If it’s a virus, then something is keeping her from recovering from it.  But her blood work is normal, her immune system apparently fine.

We can’t rule out the possibility of side effects from the p28 treatment.  Rebecca is the 38th child ever to receive this treatment, and one of a very few who’ve gotten it at her dosage level.  Maybe this is all just a huge side effect.  Except it’s been almost a week since her most recent treatment, and there doesn’t seem to be much, if any, improvement.

In the absence of certainty, it’s hard not to descend into fear.  Maybe none of these things are what’s wrong, we try not to think.  Maybe she’s just dying.  It’s a little like being deep in the heart of an unknown forest at twilight (or is it sunrise?), unsure which way to turn and what’s really dangerous.  A snake could be in that log.  A rotten tree might fall.  There might be a bear.

I grew up in forests; Kat’s totally a city girl.  But even I can’t help feeling like Rebecca is leaving us slowly, a tiny little bit at a time.  Intellectually, I know that may not be so, but in my gut I feel it.  I look at her lying limply on the sofa, her eyes vaguely focused on something a thousand miles away, and my stomach twists icily.  I want to shake her fully to life, drag her back to us, scream until the spell is somehow broken.

Instead, I take her hand and smile at her.  I sign “I love you”, tapping it to my heart as we always have in our family, to see if she’ll do the same.  Usually, she speaks “I love you” back, because that takes less energy, less movement than signing.  Her eyes crinkle with warm affection when shes says it, looking into my eyes, holding my gaze for a few moments.  Until her gaze slides away and loses its focus on the here and now.

If Rebecca were cranky and irritable from exhaustion, that would actually be easier on us, because that would make sense.  That would be normal.  It’s the quiet inertia that really, deeply scares us.  Whatever our heads may derive from looking at all the maddeningly incomplete data, our hearts are filled with fear.  We’ve tried to push it away, and also tried to accept and acknowledge it, and neither approach seems to help.  The fear persists.  We’re afraid that her light is very slowly going out, that she’s fading from this world, that she’s leaving us.

And we don’t know why.

Perhaps posting this publicly will make all the symptoms go away, and I’ll wonder some day what I was so bothered about.  I hope so.  I’ll absolutely take feeling foolish in exchange for having her be herself again.  I’ll even accept never knowing why she’s been like this.  Just as long as we can put this forest behind us.

A Good Day

As soon as the doctors came back into the room from looking at the just-completed CT images, I knew the news was not bad.  I didn’t know exactly how not-bad it was, but I could tell just from the way they walked into the room that the worst had not come to pass.  The expressions on their faces simply confirmed it.

And then their words: the primary tumor’s size is essentially unchanged since the MRI that was done three weeks ago.  There are no obvious solid tumors arising from the flare sites.

This is huge.  The rate of growth previous to starting the p28 study was frighteningly rapid.  If unchecked, it should have been at least a third bigger, maybe half again as big, maybe even twice as big, by now.  Instead, it’s basically the same size.  The flare sites have not produced tumors of any notable size, and may have produced none at all.

I can’t say if the primary tumor is exactly the same size, or a little bigger, or what, because today’s image was a CT scan (done in the Pirate Island imaging room, by the way).  As such, it can’t be directly compared to the last MRI.  We won’t get a more precise estimate until another MRI is done, and even then it won’t be ultra-precise.  Medical imaging can only get you so far, precision-wise.

The tumor isn’t being eliminated, because that’s not how this treatment works, but it is being held in check.  The p28 is buying us time—enough time, we can hope, to find a way to shrink or possibly even eliminate the tumor.  That’s where our energies will be directed in the next few weeks and months.

So after all my angst and worry about making a blind choice, there was no opportunity to make it.  In a sense, we had no choice, though of course we always had the option to refuse.  Given the situation, though, we ended up imaging earlier, and differently, than expected, for unexpected reasons.

The reasons were that, starting Friday afternoon, Rebecca became very tired, almost to the point of listlessness between daytime naps.  She hasn’t napped in years, and suddenly she was sleeping twice a day, going to bed early, waking up late, and still having low energy.  There were periods where she’d rally and be her usual self, but they got shorter and less frequent.  Yesterday, there really wasn’t a time where she had her usual energy levels.

Our instincts basically got whipsawed into pulp.  There were a few times over the weekend where I nearly tweeted that she was dying, because that’s how it felt to both me and Kat.  Then she’d rally, and we’d think that maybe it was just a virus.  And then she’d slide into a torpor that felt so much like the days before her seizure last August.

The thing was, it was only fatigue and lethargy.  There wasn’t vomiting, as we would expect with intracranial pressure, nor complaints of headaches.

Then, last night, there was an incident that seemed like a very small seizure.  We talked with the on-call nurses both here and in Pittsburgh, and both agreed that we should get her to Pittsburgh for her p28 infusion and further evaluation with the study doctors.

Kat and I were pretty well convinced that the CT would show a much larger tumor, not driving up pressure so much as disrupting the normal brain tissue and slowly killing her.  We were braced for the news that the drug wasn’t working and that she was out of the study.

As we waited for the CT machine to spin up, Kat broke from our embrace to look me in the eye.  She asked, “Are you ready for the results from this?”

“No, of course not,” I said.  “But whatever they are, we’ll deal with them.”

Less than an hour later, we were asking the doctors to repeat their findings.  No change.  Our intertwined fingers contracted, squeezing as one, disbelief translated into white-knuckle pressure.  We turned inward, fell into each other’s arms, and wept tears of relief and a kind of joy.  For the first time in months, our tears came from something other than fear and sorrow and pain.

Tonight, Rebecca is in yet another hospital bed, this time at the Cleveland Clinic.  She’s still deeply tired all the time, and if the tumor isn’t exerting pressure, then there has to be another cause.  We might have waited it out to see if it’s viral, but there are enough other signs—the incident last night, some subtle physical changes, behaviors that might not be behavioral—to tell us that she’s probably having micro-seizures, and having them pretty often.  The tumor would be the most likely culprit here, considering where it’s located.

So tonight a technician is gluing a couple dozen electrical leads to her scalp so the EEG monitor can tell us if we need to add an anti-seizure medication to her daily routine.  In one way, I hope that it does, because that would be a known, fairly easily-addressed problem.  We’ve done anti-seizure medication in the past, and have a good idea of what works for her.

Of course we don’t want her to be suffering seizures of any kind—she’s suffered enough as it is—but as Kat observed, we’ll take a seizure disorder over an unchecked brain tumor any day.

We’re not out of the woods yet.  Even if the p28 is preventing the tumor from growing, which is all we can realistically expect it to do, the tumor is still there.  We have to find a way to deal with it, because we can’t expect the p28 to be effective forever.  But if this initial effect holds up, we might have several months, possibly even a year or two, in which to search for a stronger, more permanent treatment.  We’re checking into a number of clinical trials, some you’ve heard about in the news and others that were unknown even to our neuro-oncology doctors.  (That’s not a knock on the doctors; there are a lot of studies happening at any one time, and always more being launched.)  We’ll use the time the p28 is giving us as best we can.

A long day, and a very emotional day, but a good day, one of the best in a long time.  Any day you end with more hope than you started with is a day worth celebrating.

Blind Choices

It’s the nature of cancer and its treatment that there are often incredibly difficult decisions to make on very little information with no real idea of the eventual outcome.

Once conventional treatments for cancer (or any other life-threatening illness) fail, you enter a realm with no landmarks, full of apparently identical paths, and you must choose one.  Or else refuse to choose any, and so wait for death to catch up.  Because past chemotherapy and radiation, there are experimental studies, alternative remedies, and so on.  One of them might be the path to long life and health, but there’s nothing to distinguish it from all the others.  And it’s entirely possible that none of the paths lead anywhere but a quick death, some more painful than others.  And there’s still nothing to distinguish one from another.

So many paths, all looking exactly alike.  Choose one.

We’re facing a particularly difficult decision soon.  Rebecca qualified for a Phase I clinical study of a novel treatment.  It isn’t chemotherapy, but a whole different class of drug.  To quote (with a minor edit) the Sloan-Kettering Cancer Center:

Many cancer cells have a protein called p53 that does not work properly. This protein normally puts the [brakes] on rampant cell growth, and when it does not function well, cells can continue to grow uncontrollably (as cancer cells do). The p28 drug is designed to find and kill cancer cells with dysfunctional p53.

The major advantage is that p28 isn’t anything like chemotherapy; thus, it doesn’t have the toxic side effects of chemotherapy drugs, though apparently some patients do get nauseous from the infusions.  It’s basically a genetic therapy, in the sense that the treatment is designed to address a particular genetic situation.  It doesn’t interfere with other systems, like the immune system or bone marrow.  Not so far as anyone knows, anyway.  It’s always possible the study could show otherwise.

We’re in this study because the genetic analysis of her tumor last fall indicated a “p53 deletion”.  Thus, drugs meant to address p53-related problems are a first choice.  In theory, p28 could completely halt the growth of her tumors.

In theory.  In practice, miracle drugs are never totally miraculous—every type of cancer is its own distinct thing, and every patient responds differently.  The upshot is that there’s no way to know if her tumors are being affected by the p28 drug without doing an MRI.  The doctors leading the study arm in Pittsburgh want to do an early MRI, six weeks into the study instead of 12, to see what’s going on.

If we do the MRI and the tumor is essentially unchanged from the start of the study, then it means the drug is working.  In that case, we continue the treatments while we try to figure out ways to cause the tumors to shrink, either through careful surgery or other experimental treatments.  Kat’s been researching options along those lines, since she’s the one with three advanced-practice medical degrees and a Doctorate of Nursing.

At the other end of the spectrum, if we do the MRI and it shows the tumor is growing just as fast as before, meaning the p28 isn’t working at all, we would withdraw from the study, because the time we spend going there and back for treatment is wasted time.

But if we do the MRI and it shows too much continued growth, even if it’s a reduced rate of growth, then she will no longer qualify for the study.  Some growth is acceptable under the study protocols, but too much—even if it’s less than would have been the case without the drug—is not.

We don’t know what the odds are for these outcomes.  Rebecca is part of the first p28 study ever done in children.  And there haven’t been that many p28 studies in adults.  There is nowhere near enough data to tell us what the odds of success are in general, let alone for her specific type of tumor, let alone for tumors of that type in patients with her age and gender and ethnic background.

If we scan sooner, at six weeks, two out of three outcomes will mean she exits the study and the tumor continues growing at its pre-study rate.  One of those two would mean exiting the study even though there was some benefit, simply because there wasn’t enough benefit.  The third outcome is the best case, the one where she stays in the study because it’s working.

If we wait to scan at twelve weeks, and the tumor is growing unchecked, it could very easily kill her before we get to the scan.  We would spend all those hours in the car for nothing.  Or she could have too much growth and be disqualified.  Or the growth could have stopped.

These are the blind gambles you take, the excruciatingly difficult dilemmas you face, as the parent of a dying child.  Do you find out what’s happening sooner, even though it could mean you hasten her death, when not finding out might have meant she’d live longer?  Do you wait to find out what’s happening, even though that could mean you waste six more weeks, and you could have used those six weeks to try to find another treatment, one that might actually help?

And even if you look sooner, and as a result you find out that another treatment is needed, you don’t know what other treatment will actually help.  Maybe none of them will.  The choice is real enough, but the implied promise—that the right choice, if you can somehow manage to find or luck into it, will lead to a cure—may be, almost certainly is, an illusion.

I don’t know what choice we’ll make.  I still haven’t worked out how to come to a place where I can live with whichever choice we end up making, should the worst outcome of that choice come to pass.  I can’t even take refuge in not choosing, since that is the same as choosing to scan later instead of sooner.

Events will not wait for me, of course.  Soon enough, the choice will have to be made, one way or the other, whether or not I’m ready, whether or not I’m prepared to live with the consequences.

The only thing I think I do know is that I wouldn’t be able to live with myself if I refused to make a choice.  Right or wrong, good or bad, this is part of what I volunteered for when I became a parent.  Taking that role meant taking responsibility for the lives and welfare of my children.  Now Kat and I must take direct responsibility for the life and death of our child, and if we must choose blindly, we will keep her firmly in our sight as we choose.

Afraid

Half an hour after we left UPMC this morning, just as we were approaching the entrance ramp for I-76 West, Rebecca threw up with no warning.  She threw up a lot.  We pulled over and scrambled to get her out of the car so we could clean her off and check for any other symptoms.  She stood with her arms held away from her body in the classic “ick” pose, until I peeled her shirt off to get most of the vomit away from her.  “It’s all over my arms and legs!  Why do I have to be like this?” she wailed miserably.

I pulled her to me, wrapped her in my arms, and said over and over, “I know, honey.  I know.”  Keeping my voice as level and calm as I could.  I don’t think I did a very good job of it.

By the time we’d gotten her and her car seat mostly clean, she felt fine, except for the taste in her mouth, which she pronounced “disgusting”.  We found the nearest drug store, bought some wipes and paper towels, completed the cleanup, and got back on the road, a newly fresh set of fears riding with us.

It could be the experimental treatment she’s taking, which is known to induce nausea in some kids, though she’s never been sick from it before.  It could be an aftershock from the GI ailment that went through the house the past few days, which had every single one of us dealing with unpleasant symptoms at one point or another.  It could be that she choked on her juice and triggered the gag reflex.  Or it could be the tumor, finally grown large enough to kill her.

I don’t know.  But the last time Kat and I were cleaning her off by the side of a Pennsylvania highway, she had four days to live.

September 2014
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