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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.

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.

November 2014
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