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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.

Three Interludes

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

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

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.

Today She’s Okay

While we were in Florida on Rebecca’s Make-A-Wish trip to Disney (and other parks), we were asked a few times which of our kids was the Wish kid.  And I suspect that quite a few more people just assumed it was Carolyn, since her hair is still buzz-cut short.  Rebecca was able to fully enjoy the trip and be an active part of it, every bit as much as her siblings and cousins, and the pictures and videos we all took are full of laughter and excitement from all of the kids.

This has been one of the many fortunate aspects of our misfortune: Rebecca has never really been sick, in the “I feel ill” sense of the word, since she recovered from her surgeries last fall.  The tumors in her head haven’t had any measurable neurological effects, and if they’ve made her a little more irritable or irrational, well, this is a five-year-old we’re talking about.  How could anyone tell?

Even the chemotherapy and radiation therapy had no major side effects.  We tend to think of cancer patients as thin, pale, bald, weak, and vomiting, as much from the toxins we pour into them as anything else.  Rebecca has remained as energetic, luminous, and irrepressible as ever.  Now that she’s stopped her Avastin treatments, she’s able to go back to gymnastics class, and is eager to do so.  She’s even kept a full head of hair, albeit with some loss of hair volume.  We can see that there’s less hair, but a random passerby on the street would never suspect she was a cancer patient, let alone near-terminal.

Thus our new mantra: “Today she’s okay.”  We don’t know what tomorrow will bring; but really, who ever does?  We live with a more present, known danger than most, but today she’s a normal kid.  She’s so normal that even we can forget, sometimes for hours at a time, that she’s terminally ill, that a lump of runaway growth sits behind her eye and threatens to one day kill her.  She’s so normal that we have the space to make our family’s life (mostly) normal.  We hope that tomorrow she’ll be the same.  Whenever our fear of that tomorrow rises, we say to ourselves and each other: “Today she’s okay.”

We’re still working to find treatment options, of course.  There are some promising leads developing even as other leads that looked promising have been closed to us.  A driving force in that search is the desire to keep her as healthy as possible—to preserve her quality of life while still trying to extend the quantity of her life.

It’s a balance almost incomprehensible in its gravity: to decide how much quantity to risk in exchange for protection of the quality, to decide how much quality we can sacrifice in an effort to add quantity.  Before all this, I would have thought maintaining that balance would be paralyzing, but it isn’t.  If it ever starts to become so, we have only to look at her, still full of life and vigor, to know what to do.  We may be the captains of the ship that carries her, but we steer it by the light of her star.

Today she’s okay.  And so today we’re okay.

All the Way to the End, All of Us Together

Our first day here at Disney World, we tried to go on Big Thunder Mountain Railroad, but it was closed “for refurbishment”, so we decided to try Splash Mountain instead.  In addition to being a ride that was right there where we were, it promised to cool us off a bit.  Going from 30ºF to 90ºF in the space of a day was a bit rough on everyone.

Carolyn and Uncle Jim sat in the front seat of the log boat, and Rebecca sat between me and Kat in the next seat back.  Things started well enough as we splooshed and bobbed around bends, but fairly near the beginning of the ride, you get a glimpse of its (sort-of) end: a fifty-foot drop down to a splash pool.  Rebecca, seeing a log full of people fly past us down the ramp, the screams of its riders trailing in its wake, wasn’t at all happy.  She switched instantly from being amused at the water occasionally splashing her parents to scared of what was going to happen.

The various animatronic displays along the way helped distract her, but she kept returning back to her fear of the big hill.  Kat and I soothed her as best we could, telling her it would be all right.  She generally accepted this, calming down until the next time she remembered the big hill that lay ahead.  She never cried, exactly, but the fear was still there, an almost physical thing at times.

“I don’t wanna go down the big hill!”

“Honey, it’s all right.  It’s going to be okay.  We’re right here.  Mommy and I will keep you safe.”

“No, I don’t wanna, it’s too scary.”

“I know, sweetie.  I know you don’t.  But there’s no need to be afraid.  It’s coming and it will happen and then it will be over.  Try to enjoy all the little shows before.”

“Daddy, please let me get off the ride.”

“I can’t, honey.  If there was a way to get off, we’d take it, but there isn’t.  The ride goes where it goes, and we’ll go with it, together.”

“I wanna get off this ride!”

“I wish we could get off, Rebecca, but we’re on the ride now and we have to take it all the way to the end.  I know you’re scared, but we’re right here with you.  We’ll keep you safe, sweetie.  You don’t have to be afraid.”

We’d arrived at the bottom of the last climb, the one that would take us to the big drop.  She looked up the ascending tunnel into the bright, bright light streaming down, and shrank back, quivering, her eyes wide with fear.  She knew the moment was close.  I leaned in next to her, keeping my voice level and light.

“I know, Rebecca.  I know.  I know you’re scared, but it’s going to be all right.  It’s going to be all right.  It’ll be all done very soon.  Mommy’s here, and I’m here, and we’re with you until it’s over.  We’ll stay with you all the way to the end, all of us together.  We’ll be right here with you.  Always.”

The log was drawn up the hill, the drop coming closer and closer, relentlessly.  My arm around her shoulders, Kat’s arm around her shoulders, both of us hunched toward her tiny, trembling body pressed against our sides; and as we came to the precipice, she shut her eyes and squeezed our hands tight.

On Writing

Our situation, and my posts, have been the cause of sleepless nights and fallen tears for a great many people.  In some ways I feel bad about that; it occasionally feels like I’m forcing our pain onto other people, which isn’t exactly a friendly thing to do.  But I know you’re here because you want to be here for us, and here, words are how we commune.

But why, I am occasionally asked and occasionally ask myself, am I writing about Rebecca’s cancer instead of doing other things?  There are a number of reasons.

Part of it is that I’m creating a precisely timestamped chronicle for later, the historian in me asserting itself.  This is where a lot of my tweets come from, as well: the desire to record something at the moment, so that later I’ll be able to say whether X happened before or after Y or how many days apart two events actually were.

But it’s also for Joshua, if he wants to know more about his sister and what happened to her, when he’s older; and for Carolyn, if she ever wants to revisit this time or see it from my perspective, to compare against her memories.  And perhaps for others, if I ever decide to collect these fragments into some sort of longer work.

More importantly, writing about what’s happening and how I feel about it allows me to organize my thoughts and give some structure to what’s happening.  In a situation where so much is beyond our ability to do anything at all, this is something I can shape directly.  It allows me to feel some small measure of influence.  It lets me face my fears by naming them.  It helps me get a handle on a few shards of this overwhelming thing that defies any real understanding.

And of course I’m grieving online.  I do that here so that I can put it away elsewhere, so to speak.  When I’m with the kids, I can be there for them as the father I’ve always been and hope to keep being, rather than the hollowed-out ruin I sometimes feel like.  Grieving here, through the words that come to me, makes that easier to do.  So I write and tweet.  A little bit of pressure release.

But most of all, I am sharing Rebecca with you, with anyone who will listen.  We’ve always felt it’s up to our kids to become themselves and then bring themselves to the world in their own way, to meaningfully affect it and be affected by it.  In the words of Khalil Gibran:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

We’ve always meant for our children to fly free of their own accord, on the arc of their choosing, when they were ready.  Rebecca will almost certainly not have that opportunity.

So now we are her archers.  In the Web, I have a bow that can send her arrow all the way around the world.  If her flight is to be short, then let it be far, a trail of purest fire etched across every sky, more beautiful and wondrous than any comet could ever hope to be.

The Evening

We had guests for dinner, as we often do, a house full of squealing, laughing children and their grownups, preparing dinner and trying to figure out who would get stuck with setting the table.  We’d all gone up the street to the elementary school to test out their new playground equipment and try to fly a kite in the random spring breeze, running around an open field and trying not to slip in the mud.  Now we were back and ready to eat.

Rebecca played and laughed with the other kids, all obvious traces of our conversation earlier that day erased by the simple joy being a five-year-old, living wholly in the moment.  Playing impromptu tag, hiding around corners to shout “Boo!” and cackle with delight, singing pop songs and musical numbers with her sister and friends.  Because for all that’s going on, you would never know to look at her that anything was wrong.  We can even forget, from time to time.  She lives just as she always has, full of energy and smiles, and we’re determined to keep it that way as long as we can.

Eventually, it was time to take the little ones up to bed, which Kat and I divided up with a family friend.  Suddenly, I heard Kat’s voice breaking.  She was in the nursing chair we still have hanging around the house, Joshua on her lap, ready to read his bedtime stories.  Rebecca was standing next to her, still and calm.  I sat on the footstool, my legs just behind Rebecca’s.

“Rebecca told me she’s scared that she’s going to die and be all alone.  Baby, we will be always be with you, always always always.  You will never be alone.  Okay?”

My hand was on Rebecca’s back, tears in my eyes but not on my cheek.  I asked if she understood what Mommy had said.  She nodded, her eyes cast down in thought.  We thanked her for telling us what she was feeling, for trusting us.  She nodded again, and turned to look at me.  Looked into my eyes, and saw everything that was there.  Gave me a sad, affectionate smile, put her arms tenderly around me, and kissed me gently on the cheek.

My little girl, my child, trying to soothe my pain.


Later, as she lay under her princess blankets to read her own bedtime stories with a family friend, I came in to tell her good night.  She was holding a book about kids who have cancer.  We have such books, now.  I perched on the edge of the bed next to her and smoothed back a riot of her curls.

“Can you tell Daddy why you picked this book to read?” our friend prompted.

“Daddy, I’m reading this book because it will help me be strong—”, she curled her arms in classic strongman pose, then dropped them, “—and brrrave.”  She beamed up at me.

I smoothed back another curl, affectionately tweaked the end of her nose, and looked directly into her eyes as I said, “Sweetie, you are already by far the strongest and bravest person I have ever met.”

A wide grin, a little chortle, and then she flung her arms wide.  I leaned down and she leaned up, our arms circling each other, squeezing just hard enough.  I held her lean, solid weight close, her body strong and light, and for those moments I felt no sorrow, no fear, no pain, not for her and not for me, not for any of us.  There was just a calm peace rooted in the strength of her love and the bravery of her heart, and nothing else.

September 2014
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