Posts in the Parenting Category

Apophenia

Published 10 years, 1 month past
My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.

Kat and Carolyn were in New York City this past weekend for a brief trip, and when they got back Kat was in a bad way.  I picked them up from the airport and Kat’s symptoms were such that I drove her straight to the Cleveland Clinic ER on suspicion of a cardiac event.  (It wasn’t.)  With the help of friends, I got the kids off to their scheduled activities and stayed with Kat.  By late in the afternoon, we knew she’d be staying overnight, and we decided that I should go to be with the kids.

I gathered up the backpacks and dirty clothes from their weekend trip, slung them over my shoulder, and then stood at Kat’s bedside, holding her hand.  Not speaking, just standing.  Eventually she gave me a small smile and said, “Go on.”

I twitched toward the door, and failed to actually move.  Kept standing.  Kept holding.

“I’ll be all right, Eric.  It’s fine.  Go.”

“I know it’s stupid, but I’m afraid to.  The two times I walked away from Rebecca in a hospital, it didn’t end well.”

We spent our last few hours of innocent ignorance in an emergency room in New Jersey, getting Rebecca rehydrated and hoping to figure out what was going on.  She was so lethargic and tired, and we feared spinal meningitis.  As the day wore on, she seemed stable, neither better nor worse, but one of us had to go get the other kids.  We decided to have Kat stay, since she was the medical professional.  I gave Rebecca a hug and kiss, told her I loved her so much and to feel better soon, and walked out the door.  Not long after that, she had her first seizure.

Just a few months later, after the surgeries and protons and initial chemotherapy and our return back home to Cleveland, Rebecca finally came down with a fever.  It was of course at a time that we could only take her to the ER for evaluation, to make sure she wasn’t neutropenic.  It was evening, and we were hungry, so I went over to the food court while the last few tests were run before they discharged us.  While I was gone, the staff gave Rebecca a routine dose of ceftriaxone, and she immediately had a strong anaphylactic reaction.  We had never known she was allergic to it.  Antihistamines were quickly administered, and she had to spend the night at the hospital in case the reaction flared up again.  It didn’t.

Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong.

And of course there’s nothing to that but coincidence, but we evolved to spot patterns.  It was a survival skill of the savannah, to see how disparate and apparently unconnected events tied together into a cohesive story.

Now we drag it around with us like a growth that we’ve long since ceased to notice.  We see stories written in the stars and meaning imposed on our mundanity.  The most common question we ask is “Why?”, and that can lead us to wonderful discoveries and insight, but it seems just as often to mislead us into an egotistic reordering of the world.  Our obsessive quest for causes can all too easily cause us to invest in illusions.  That pattern-recognizer that coils through the hindbrain can and does turn on us.

Think of all the conspiracy theories you’ve ever heard or believed.  Think of all the times you’ve heard of something terrible happening to someone and asked yourself why it happened.  Think of all the people who get blamed for what has happened to or even near them, regardless of whether we know all they did or didn’t do.

Think of all the Greek or Roman or any other culture’s myths, the stories where some person draws the notice of the gods, who then proceed to punish them for hubris or mischievously grant their prayer according to its letter but opposite its spirit.  That impulse is no less strong in us.  So many people ask themselves what they could have done differently to avoid their current situation, or what they’ve done to deserve what’s happened to them.

And even our language enforces this view, subtly and persistently.  In the last paragraph, I could have written “So many people ask themselves what they could have done differently to avoid their fate”, but “fate” is a concept born of stories.  It carries with it meanings of destiny, of supernatural forces directing a specific outcome.  I even started to type the word, and then replaced it with “current situation”, which is a far more accurate rendition of what I want to say, but not nearly so poetic.

Not nearly so story-like.

We optimize our language’s patterns to favor the concepts that feel the best to us.  All languages do.  And in doing so, we not only reflect the patterns we see, but reinforce them.  Powerfully.  We reorder the way we see the world, we create patterns of filtering, and when we talk to each other we transmit those patterns to each other, self-reinforcing.

I could say the patterns are living, memetic symbiotes, and thus fall victim to the overactive pattern-recognizer in my own hindbrain.

So we ask ourselves what we could have done to save Rebecca.  I can and do believe as strongly as I believe anything that there was never any hope for Rebecca.  Her genetic makeup, some accident of her conception or fetal development or whatever, meant that she was always going to die of cancer as a child.  We could have tried anything from megadoses of chemotherapy to experimental surgery to the latest woo-woo herbal treatments, and she still would have died.  All we could affect was how long that took, and what her short life would be like as it came to an end.  And we had no way to know which choices struck the best balance of lifespan and life quality.

I like to think that we did well, but for all I know some other set of choices would have given her another six or twelve months with the same quality of life she had.  I don’t know, and I don’t torture myself over that; we did the best we possibly could.  Perhaps that’s me imposing an absent pattern on disparate points of data again, but she did have great quality of life, up until the last week or so, and we fought ourselves to safeguard that for her.  It will have to be enough.

And yet, I still ask myself sometimes if we somehow could have saved her.  If there was a moment when the doctors said X, that we were supposed to do Y instead.  And there’s that pattern-recognizer, affecting our language again: “we were supposed to”.  As if her life was meant to be a long and perfect story, and we were too blind and stupid to see it and fulfill it.  As if we failed to understand what we were supposed to do.

That same impulse is only a short step away from taking responsibility for the cancer itself.  Wondering if we could have avoided the cancer entirely if we’d fed her a different diet, or lived in a different city with different air, or taken a different approach in infant medications, or to vaccination.  Or if we’d been less satisfied with our lives.  Maybe she’d be all right if we hadn’t had the impulse to thank whatever gods or demons might lurk beyond the horizon for our lives that seemed so right, and say no more than that; maybe she suffered for our being humbly grateful for what we had and not thinking that we needed to beg for that state to continue.  Punished for the hubris of believing that our lives were good and in no need of improvement.

“What did I do to deserve this?” it’s so easy to ask.  “What did she do to deserve this?  Why her?  Why us?”

“Why”.  “Deserve”.

Patterns of instinct, encoded in language, enforced in thought, imposed on the world.

Capricious deities, lurking in the clouds.  Heroes and monsters, written in the stars.

Twice I walked away from a loved one lying in a hospital bed.  Twice something went terribly, horribly wrong in my absence.

So I stood there holding Kat’s hand, wanting to stay with her even if it meant sleeping in a hospital chair all night, because deep in my hindbrain, the pattern-recognizer was screaming that something would go wrong, just like those other times.  That she would die if I left.

I squeezed her hand and gave her a kiss, told her I loved her and to feel better, and walked out the door.

She’s fine.

Presence and the Gift

Published 10 years, 2 months past

There are two aspects of my parenting that have really helped me cope with the illness and death of my daughter.  One was there long before she became ill, was in place before we had any kids; and the other I learned in the months since the first tumor emerged.

What I’ve had all along is a strong determination to appreciate each stage of our kids’ lives for themselves.  I’ve heard or read any number of parents saying they wish the next stage of development would hurry up, or that a past stage had lasted longer.  You know: “Oh, I can’t wait for Johnny to start talking, all this grunting and wailing is so difficult!”  Then, months later: “I really miss the quiet days, before Johnny talked non-stop all day every day!”

Sure, the current stage is difficult.  They’re all difficult.  They’re also amazing, unique to each child, and they’ll never happen again.

So I went into parenthood determined not to push them forward, and equally not to hold them back.  Of course we teach and encourage them.  We taught them sign language so they could talk before they spoke.  But we also didn’t push it, drilling them and punishing every mistake and rewarding every success.  It was the same with speech: we spoke and signed with them, and they picked up each at their pace.  The same with solid foods, and potty training, and learning to read and write.

Of course this isn’t a 100% deal.  I don’t always manage to maintain a Zen tranquility about every last thing.  I’m really ready for diapers to be done, for example; it’s been a decade now, and I’m pretty much over it.  But we’re not pushing it, and I don’t make a big deal out of it — or even a small deal.  This phase will be done when it’s done.

That focus on appreciating the kids for who they are every day has long made it easier for me to navigate the regular shoals of parenting.  And believe it or not, it’s made dealing with illness and death easier.  I didn’t fidget impatiently for the end of the treatments, or try to block out what was happening.  I didn’t spend my time looking over the horizon, dreaming of future days and missing what was happening in front of me.  I was focused on what was happening, good and bad.  Every day, as much as I could stand.

Given how little time we had, I am incredibly glad that I was present for it.  That I cherished everything good in it, and accepted everything bad.  I shudder to think how I’d be doing now if I hadn’t.

That was the first thing that helped.  The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.  That probably sounds like a prescription for massive spoilage and neuroses galore, but hear me out.

Try to imagine this: you learn that your child has a small but noticeable chance of dying a year from now.  Say, 5%, or something like that.  There’s nothing you can do to change that, it’s just how it is: a small chance they have a year left, and a much much larger chance they don’t.  How would that change how you treat them and interact with them?

For me, it created a new blend of short-term and long-term parenting.  I’ve always been a long-term parent, thinking ahead years or decades.  That sometimes led me to be stern or unyielding, and to not always express an appropriate amount of patience and care when it came time to discipline.

But when I realized Rebecca would likely be dead within a year, I realized I had to change how I acted toward her.  I had to soften how I disciplined.  By soften, I don’t mean letting her do whatever she wanted, or reducing the scope of discipline.  It meant working extra hard to meet outbursts of five-year-old rage with calm and measured words.  It meant being clear about the causes and reasons for punishment while working extra hard to be matter-of-fact and neutral about it.

These were things I’d always tried to do, but in the chaos and tumult of day-to-day life, I hadn’t always pushed myself.  Now, with a limited time frame, I had to make every day count.

And, once I realized that, I realized I had to do it for all three kids.  Because who knows what will happen?  We all have a limited time frame, easy though that can be to forget.  Carolyn might have died in an accident before Rebecca’s tumor came back.  How would I feel if that happened, and the last thing I had said to her was angry in words and tone?

I had been falling short with all of them.  Rebecca falling ill made me realize that, and showed me how to step up.  And so I have.

As I said, that doesn’t mean their discipline has lessened.  Because, to go back to the 5% chance of death in a year scenario, that’s a 95% chance that they’ll grow up to be adults.  So you can’t let them run wild; if you do that and they grow up, you’ll just as surely have failed them, not to mention everyone who comes into contact with them.  The boundaries are still the same.  I just try my best to communicate them in a different way.

Even with the odds of death much higher than 5%, that’s how we treated Rebecca.  Partly it was because she might survive, and partly it was because she wasn’t an only child.  We had to treat her consistently with our other children for their sake, as well as for hers.  Even more for her siblings, perhaps, given the outcome.

But when I did put her in time out, or took away a privilege, I always did my utmost to do so quietly and with care, not in anger.  Not with a smile, which would have mocked her frustration; nor with raised voice, which would have escalated it.  Just calmly, implacably, maybe a little sadly.  I did my best every time, and not just with her.  With all three kids.  I continue to do it with our surviving children.

I don’t always succeed, but I always try.  And when I find myself losing control, a quick internal reminder of the stakes is usually sufficient to regain my course.  Usually.  I’m not perfect.  But I’ll keep trying.  That’s all anyone can do, is keep trying.

The Silent Hole in the World

Published 10 years, 5 months past

There is a sound a family makes that only its members can truly appreciate.  The interplay of voices, footfalls, laughter, sobbing, shrieks of joy and frustration and anger, songs sung, catchphrases, the rattle and chirp of beloved toys played with, doors slamming, the rustling of clothing and whispers of breathing, running water and bath splashes and teeth brushed.  The aural fabric of lives entwined.  It forms a curtain around you, altering your perceptions of the world.  It becomes the world.

You feel it, usually half-consciously, but if you stop and listen with purpose, you can actively hear it and savor it and know that the world is right, secure and content inside the cocoon it weaves.  It’s not a symphony, it’s nothing so organized and artificial and remote as that, but sure, yes, call it a symphony, because words like “texture” and “landscape” are even more misleading.

And now a whole section has been silenced.  Not simply resting, not waiting to rejoin the piece, but utterly removed from the stage.  Vanished forever.

I cannot describe how utterly wrong that feels.  Everything feels wrong, sounds wrong, every instinct is scraped on edge, screaming danger, because something has gone fundamentally, horribly wrong and I must fix it.  And I can’t fix it.  It can never be fixed, not by anyone.  Someone is missing and will never be found, no matter how many times we look; can never be replaced, no matter what we might do to try.

There is a silent hole in the world, and the best I can ever hope to do is train my ear not to hear it, most of the time.  Find a way to hear around the void and let what’s left fill my ears.  If I am lucky and work very hard at it, I can learn to appreciate the symphony for what it is, and not constantly obsess over what it once was and should still be.

The Thief of Light

Published 10 years, 6 months past

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.

Blind Choices

Published 10 years, 7 months past

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.

Three Interludes

Published 10 years, 7 months past

We lay snuggled together in her bed, the stories read and books put away, the lights turned low, listening to her nighttime music.

“Rebecca, can I tell you a secret?”

“Sure.”

“I love you super a lot.”

“I already knew you were going to say that, Daddy.”

“Oh, so it’s not a secret?”

“Nope.”

“Well then, can I tell you something that’s NOT a secret?”

“Sure.”

“I love you super a lot.”

(exasperated sigh)

I answered with a small chuckle, which earned me an affectionate glare.  Five minutes later, she was asleep, her breath quiet and even and calm and as normal as it had ever been, in the years before the tumors and the months after.

We were at the local playground, Rebecca and her sister Carolyn and brother Joshua and some friends and me.  At no apparent prompting, Rebecca came running toward me, then slowed to a walk and beckoned me to lean down closer to her.

“Daddy, I need to tell you something.”

“What?”

“I love you.”

“I love you too.”

“I love you more! I love you to infinity… and BEYOND! No really, I do.”

And she was already headed back to the slides, smiling at me over her shoulder, her eyes squinted in a knowing amusement, before she turned away and rejoined the other kids at play.

We lay snuggled together in her bed, the lights turned low, listening to her nighttime music and admiring the rainbow arc projected onto the ceiling by a bedside light.  It fell across the ceiling fan and some of the get-well stars strung in a line from one side of the room to the other.

“Daddy, did someone put a rainbow on that star?”

“No, it’s from the rainbow light, sweetie.”

“Oh.”

“What do you think when you look at your stars?”

“I think that my friends are always cheering for me.  Always.”

“You bet they are.  Always.”

“I love you, Daddy.”

“I love you too.”

“I will love you forever.”

“I will love you forever and ever.”

“Daddy, why are you copying me?”

“Well, because your words are beautiful, and they’re all true.”

“Oh.  Okay.”

“I love you to the moon and the stars and back again.  I love you to infinity and beyond.”

“Okay, okay, Daddy, we get it already.”

“Good.”

She smiled at me like we shared a gentle secret, as normal as ever.  I kissed her forehead, and within two minutes, she had fallen asleep.  I listened to her slow, steady breathing, my arm still curled around her — not to protect her, but just to hold her close — and looked up at the stars and watched the rainbow until its timer reached zero and it faded away.

Heroic Measures

Published 10 years, 7 months past

This morning, I walked Rebecca and her best friend to kindergarten, all of us enjoying the crisp spring sunshine after the long, cold winter.  The girls ran ahead of me to see if the playground had been re-flooded by last night’s rains (it hadn’t) and then balance-walked a low retaining wall.  Once inside the school doors, I hugged and kissed Rebecca and told her to have a good day, collecting a hug and kiss and a “Love you, Daddy“ in return.  I watched as she tromped down the hallway in her sparkly new Bella Ballerina shoes and pajamas (today is a special Pajama Day at school) and rounded the corner out of sight.  And then I handed her principal a Do Not Resuscitate order.

She’s still so alive, so very vital, but we know that could change at any moment.  We’ve lived through it once already, last August, when she went from playing on the beach to the literal brink of death in just three days.

We carry DNR cards with us, and have given the school a DNR form sealed into a manila envelope with our names and phone numbers written on the outside, because if she suddenly seizes, our overriding goal is to make her as comfortable as possible while she dies.  The EMTs or hospice or we ourselves will give her medication to take away the pain and, if at all possible, the fear.  As much as she needs.

Because we know what will happen if the tumor induces seizure and she’s forced back to life.  We know that once it’s reached that stage, there are mere hours left, even if we permit life-prolonging measures.  Heroic measures, they’re called.  Hours, possibly days, spent in misery and pain and fear.

We can’t do that to her.  If there were a reasonable chance of her suffering leading to a cure, yes.  We did that last August, submitting her to multiple surgeries and the difficult recovery afterward, because there was reason to think that doing so would save her life.

Now we know better.  We know that when the cancer overwhelms her, there is nothing that can stop it.  We know that the best we can do is make what’s left of her life as normal and happy and full of love as possible, and minimize any horrors as it ends.

We’ve thought about pulling her from school entirely.  That would ensure that if she does have a sudden seizure, she’ll do so with one of us.  By sending her to school, we risk it happening when she’s not with us, and inflicting that experience on her schoolmates instead.

We send her to school because she loves it there, however much she may complain about having to get up in the morning and get dressed and put on a coat to walk to school.  Try as she may to hide it, she loves to learn.  She loves her teacher, her classmates, and her friends, and they love her in return.  It would be selfish of us to take that away, despite the risks, despite the hours of separation.  It would shift some of our burden onto her shoulders, force her to pay the cost of our sorrow and fear.

There are so few things we can do for her now, so very few things, but we can do this: we can give her her life, as whole and unbroken as we can manage, and an unspoken promise to fiercely guard it from even ourselves.  We can give her this.  Our last gift.

A New Trial

Published 10 years, 7 months past

Very early this morning, we hit the road for Pittsburgh.  We plan to be back home around lunchtime.  We plan to do this three times a week for the next four weeks.  Twelve days of two and a half hours in the car, an hour or more in the hospital, and then another 2.5 hours in the car, all on a slim hope of buying some time.

Rebecca has qualified for a Phase 1 clinical trial of an experimental drug that might — it might, maybe, possibly, if we’re very lucky — slow or even halt the growth of her tumors for a while.  Not shrink them nor eradicate them; this is not a cure.  It’s a new type of treatment, not chemotherapy, but genetic trickery.  Our research had led us to be very interested in this study, and thankfully we were able to secure a spot and qualify for inclusion.

The fact that it’s not chemotherapy means there should be no toxic or other negative physical side effects, which is a very high priority for us.  Furthermore, for people with Rebecca’s specific genetic mutation, this drug has shown a fair amount of promise.  In an earlier Phase 1 trial of the same drug as applied to adults, one patient’s tumors stopped growing for a period of years.  But then, another’s tumors barely stopped growing at all.  (And we don’t know which kinds of tumors responded in which ways.)

This clinical trial is the first test of the drug in children, to see if it works the same, or better, or worse, as compared to adults.  It’s being managed through the Pediatric Brain Tumor Consortium.  The closest PBTC site is the Children’s Hospital of Pittsburgh, where we were able to be sited.  So off we go.

And we keep asking ourselves: Are we doing the right thing?  Is it worth it?

It might seem like an easy choice.  What’s three mornings a week against a child’s life?  It’s 20-25 hours, is what it is, out of something like a hundred waking hours every week.  That’s almost a quarter of her waking time spent sitting in cars and hospital rooms, instead of being at school or running around playgrounds or coloring or playing with friends and siblings.

Sitting in a car isn’t 100% wasted time, of course; it’s not like she’ll be confined to a blank beige box for the trip.  She can sleep on the way there, and watch videos or play games on the way back — thank you, tablet computing industry! — or vice versa, I suppose; but it’s still a lot of time that could otherwise be invested in other, more interesting activities.  So while there may be no pharmacological side effects, there are serious side effects nonetheless.

And thanks to the MRI that was done Thursday, in order to establish a baseline for the study, we know that she is quickly running out of time.  The primary tumor is noticeably larger than it was five weeks ago, and the flare sites haven’t gone away.  How she’s managed to avoid neurological damage, nobody is quite sure.

Given how little time she has left if untreated, if this drug adds a year to her life, then yes, it’s absolutely worth it, especially if that gives us time to qualify for a study that somehow leads to tumor reduction.  But what if the drug only adds a couple of weeks?  Is it worth it to extend her remaining time by fifteen percent, if a quarter of her life is spent away from friends and home?

On the other hand, what if the drug doubles her time left to live?

On the other other hand, what if it doesn’t add any time at all?

We don’t know.  We can’t know.  We can only guess, and try to be as rational about it as we can be even though we are, essentially, blindly choosing how quickly our child will die, and what her life will be like along the way.

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