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Archive: August 2013

Team Becca

Some of our Cleveland friends have organized “Team Becca” as part of the 2013 Northeast Ohio CureSearch Walk for Children’s Cancer to be held in University Circle on the morning of Saturday, September 28.  If anyone would like to join and walk the 1.75 mile course, please do; if you can’t join as a walker, please consider making a small donation to the team as a show of support.  It would be much appreciated.

Kat and I hope to participate in the walk with Rebecca, but we won’t be able to commit until a week or so before the event.  Basically, until we know our exact schedule and how Rebecca reacts to the sedation-and-radiation-and-chemotherapy regimen, we can’t commit to much of anything.  But our friends will be there, and hopefully some of you will be there (either in person or in spirit), and if at all possible we’ll be there too.

So Very Lucky

All things considered, we were incredibly lucky that Rebecca’s brain tumor emerged on vacation.  We were incredibly lucky in so many ways that it almost defies believability.

For starters, because we were in New Jersey, Rebecca was transferred to The Children’s Hospital of Philadelphia, which is very likely the absolute best place she could have been treated for her particular problem.  I sent a copy of her MRIs to a cousin of mine who’s a highly respected radiologist, and he showed it to a colleague, and they both can scarcely believe how much of the tumor was removed.  It’s essentially a total resection in an incredibly risky and difficult-to-reach area of the brain.

Anywhere else, with any other surgery team, there might have been more of the tumor left in her head, leading to significantly lower odds of long-term survival.  Furthermore, CHOP is one of the few places in the country with a proton radiation facility, which allows us continuity of care in a great program, and they are participating in a study of chemotherapy/radiation therapy combinations that could raise the odds even further.  This is the place that will give her the best shot at complete elimination of the cancer.  If we’d been at home, it’s incredibly unlikely we’d have come here.  Even if it had been suggested, Rebecca would have been far too ill to transport so far.  Instead, we transported her within range of CHOP in the family minivan just before (or even as) her symptoms began to manifest.

Just as lucky is that we were on vacation and so able to pay closer attention to Rebecca’s initial symptoms over periods of time unbroken by work or errands.  We were deeply in tune with what was going on, and so Kat knew when it was time to go back to the emergency room.  That’s where Rebecca’s seizures happened, and the ER staff responded instantly and flawlessly, which means she was stabilized in the minimum possible time.  That very well may have spared her, neurologically; in those situations, every second counts.  If we had been out of the ER, or maybe even in a different ER, she might not have fared so well.  If we had been in Cleveland, given the time that she seized, we might well have been driving her from the pediatrician’s office to the ER.

Then there was the logistical luck.

Kat’s high school friend Lisa, who lives just north of New York City and was already planning to come with her daughter to join us for the second week of our vacation, was able to come south as soon as she got our call, even before we knew exactly where we wanted her to go.

Even more incredibly, our very good Cleveland friends Gini and Ferrett were on the road, on their way to a convention in New England, and were paying the toll at the Tappan Zee Bridge when I called them with the news.  They immediately turned around to head south as well, and arrived at our vacation rental exactly the same time Lisa did.

We sent everyone there instead of Philadelphia so they could take care of our children Carolyn and Joshua, who were being watched by a sitter who turned out to be someone we already knew.  Kat and I had already left for Philadelphia, driven there by the woman who runs the sitter service we’ve always used on our vacations in New Jersey.  We didn’t even ask.  We were still trying to figure out how to get to Philadelphia when she found us a sitter—her own daughter—who could stay until our friends arrived, and then volunteered to drive us to CHOP so we could be with Rebecca, to support her and each other.  Even after all those years of using her service, that evening was the first time we’d actually met in person.

The kids came up to CHOP with Lisa, Gini, and Ferrett the next morning, bringing the whole family together.  Everyone needed a place to stay, and lo: Kat’s cousin Wendy and her family, who live 20 minutes west of Philadelphia, were leaving that same day for a week of their own on the Jersey shore.  They offered their house without a second thought, allowing everyone to stay less than half an hour away instead of five times that distance.

And further, the fact that it was late summer made it possible for more people to come to our without being hampered by the weather or school being in session and so on.  My parents could make the drive from Florida to Philadelphia on a moment’s notice, pushing through the entire 15-hour trip, and stay with us for almost a week.  Kat’s friend Dena could take the Acela down to help out the very next morning, mere hours after we’d arrived at the hospital.  Our friends Jen and Alyx were able to drive from Cleveland to Philadelphia later in the week to give Rebecca’s brother and sister more familiar faces.  Our various friends were able to get Rebecca’s siblings back to the shore so they could finish their vacation, away from the constant stress of the hospital, and they were able to meet up with Kat’s cousin’s family for a night on the boardwalk.

Everything came together.  So much support assembled in so little time with so few roadblocks that it still amazes me just a bit.

All things considered, I’d rather my daughter had never had a brain tumor, especially one so rare, in the first place…but given that she did, we are so, so lucky that it emerged on vacation.

What If

One of the hardest things for me is that too much of the time, the thought lurks in the back of my head: “What if she dies?”

I think any parent has that thought at specific moments, no matter how hard you try to suppress or transcend it.  The first time your child climbs up higher than their own height, when they get enthusiastic about sports, when they take their first solo plane flight, when they start learning to drive…you can intellectually know the odds, know that the chances of them being killed in the act of crossing the street or backpacking across Europe are infinitesimal, and yet that primal thought surfaces.  Maybe just for an instant, but still, it’s there.

And you let them do it anyway, because the alternative is to forbid them doing anything even slightly dangerous, keeping them at home and at your side at all times until their life becomes indistinguishable from the backstory in a Stephen King novel.  You have to let them live their life and hope that it all works out, that they don’t roll a long string of ones at the craps table of life.  You have to let them live.

But what if she dies?

Rebecca’s odds are better than we had feared, not as good as we’d fervently hoped: a 50% chance of surviving the next five years.  Imagine that your child’s life depended on a coin flip.  That’s where we are.  Even with the best doctors and care and technology in the country or possibly even the world, her chances of making it to her tenth birthday are basically the same as the chances that your football team gets to choose between kicking or receiving.

In order to maximize her chances of surviving, we have a lot of decisions to make.  The first was where to take her for proton bombardment.  That one seemed pretty easy: in fact, we made it in the room where they delivered the diagnosis, without needing words to come to consensus.  CHOP is the best, or one of the best, and we can get her started as soon as possible, denying the leftover malignancies extra time to continue their spread.

The decisions when we get home are a great deal more difficult.  We have three excellent health care options in Cleveland—The Cleveland Clinic, Rainbow Babies & Children’s Hospital, and Akron Children’s Hospital—but all of them are imperfect in different ways.  None of them immediately stands out as the clear best choice.

We’ll tour and interview with each of them as soon as possible, but what it comes down to is that we have to pick the facility that we believe will give Rebecca the best chances, both over the course of chemotherapy and followup examinations as well as if she suddenly requires more brain surgery.  How do we weight those factors?  How can we know what we’ll need two, three, four years from now?  What if we guess wrong?

What if she dies?

Every decision a parent makes—buying a crib, allowing a piece of chewing gum, signing up for sports camp, going to the swimming pool, handing over the car keys—is a gamble with their child’s life.  It’s just that most of those decisions have very, very long odds, some of them close to infinite odds, against losing.  Now Kat and I find ourselves in a situation where the odds are not at all long, where they in fact are horrifyingly short, and we are tasked with keeping them from getting any shorter.

And if you want to know the real, true hell of this new phase of our lives, it’s this: we can ace every decision, increase Rebecca’s odds at every step, give her the best shot of all possible shots at living to be an adult…and still, after all that, the cancer might survive the radiation and the chemotherapy, hiding a few malignant cells in critical brain tissue until we’ve run out of things to kill it with, and then re-emerge to kill her instead.  We could make all the right moves, and she could still die.

Of course, that happens every day, randomly or otherwise.  Parents who make no wrong safety decisions still lose children.  That possibility, however small, is part of parenting, and you go into the job knowing that.  You do what you can to properly balance safety and independence, and past that, all you can do is hope.  Even, or perhaps especially, when the odds shift far enough to throw the whole mechanism of randomness and luck into painfully sharp relief and turn what used to be routine, slightly banal decisions into long and sleepless nights.

In the end, all we can do is hope that the coin flip comes up in Rebecca’s favor.

But what if she dies?

One Step At A Time

This is the stage of recovery where things are both going great and deeply difficult.  (Because alliteration.)  And the two are inextricably intertwined, so that even the difficulty becomes a sign of the progress.

Although we don’t have exact start and end dates yet, since that depends on when they can get Rebecca’s brain mapped in excruciating detail, we have a treatment plan that feels pretty solid.  That in itself is a relief, as was learning that CHOP is in-network for my health insurance plan.  That’s huge, considering what kind of treatments and care were required to save Rebecca’s life.  Had all this been out of network, well, let’s just say that at a minimum I would have had to restart my retirement planning from scratch.

Rebecca has improved greatly over the past two days, and as of today was taking unassisted steps, holding a hand for balance, walking slowly from bed to hallway and back.  Her fine motor skills have pretty much come back up to par: her handwriting looks not a bit different than it did two weeks ago.  What she needs now is strength, a bit more gross motor skill recovery, and to re-establish her balance.  And that last might be a function of strength.  It’s easy to lose your balance when your legs are trembling from the effort of holding up your weight.

As her strength returns, though, she has enough spare energy to start processing what’s happened to her and how her life has changed from what she remembers.  All sorts of fears and resentments bubble up, as they should, and can trigger epic temper tantrums that require a great deal of patience to weather, diagnose, and treat.  We’re trying as hard as we can not to medicate her into quiescence, because that’s not her and it’s not our way.  We want her fired up and ready to fight, her old fierce self.  At the same time, we don’t want her to unnecessarily suffer real, physical pain.

It’s a tough line to walk as a parent, because we are determined not to baby her, but at the same time we have to constantly make snap judgements as to whether or not she’s really at her temporary limits, or if she’s using her situation as an excuse to be a defiant five-year-old.  Then we second-guess our snap judgements.  Sometimes we make the wrong calls, and learning to accept that is part of our adjustment process.  We keep moving forward just as she does, slowly relearning how to do what had become second nature, stumbling, regaining our feet, and taking another step, and another, and another.

In between the storms and second-guessing, Rebecca is her old impish self, constantly smiling like she has the world’s greatest secret on her lips, laughing quietly at the funny movies she watches, making silly faces at the nurses, and generally charming the hell out of anyone she meets.  She is herself, something we had feared (with good reason) might not be the case.  That alone is reason to celebrate.

Holding Pattern

A lot of people have asked how they can help us, and the truth is that right now, I really don’t know.  Even more importantly, I don’t need to know.  Throwing me a thousand things to think about is not going to help.  We love and cherish and appreciate all the expressions of support and caring more than most of you can imagine.  We are helped by knowing that you want to help.  If we knew of a specific way you could help, I’d say so, and will.  We’re just dealing with a lot right now.

We have a meeting today with a hospital social worker who will give us information on things like the Ronald McDonald House and other nearby short-term housing solutions, and whatever other things they know we need to think about that haven’t occurred to us yet.  We’ll deal with those things as they come.  We have to deal with everything as it comes.

Some people have asked if there’s a way they can donate money.  Please, not yet.  I literally do not know how much all this will cost, not even within a rough order of magnitude.  Maybe it will be a few tens of thousands of dollars that we can easily pay on a plan—hospitals are quite used to that sort of thing.  Maybe it will be hundreds of thousands of dollars, or well over a million.  I have not the first idea, and as of this moment I really don’t care.  Believe me when I say that if we need financial assistance, I will ask for it.

I realize that I’m effectively asking everyone to stay in a holding pattern, and that’s kind of sucky when the instinct is to jump into the breach and help, but that’s what we need at this moment in time.  Be ready and willing to help when help is needed, and hold us in your thoughts.

The Diagnosis

Rebecca has grade 3 (anaplastic) astrocytoma.  With six weeks of proton radiation bombardment of her brain and a year of mild chemotherapy, she still has a 50% chance of dying at some point in the next five years.  Because if, after all that treatment, another tumor emerges, there are no more treatments that will help.  We will only be able to watch her die.

On the other hand, if she survives those five years, her chances of growing to adulthood are excellent.  In the meantime, her quality of life will not be terrible, however long it lasts.

There are very few proton treatment facilities in this country (or any other), but one of them is the Children’s Hospital of Philadelphia.  We have already decided that is where she will receive her treatment, which will begin after two weeks of intensive planning.  I don’t yet know where in Philadelphia we will live for the next two months; not in the hospital, as the radiation therapy is outpatient, and we will be discharged once she regains her physical strength.  I know we will find a place, one way or the other.  For now, she is still in the hospital, and we are trying to face each day as it comes.

Kat and I are still deep in shock.  Carolyn is struggling mightily to cope with everything that’s happening to her sister, her family, and her life.  Rebecca is still physically extremely weak and doesn’t want to know what the doctors said.

Me either.

I don’t have much else to say right now.

77 Hours

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We don’t know.  We never know.

Three Steps Forward, Two Steps Back

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

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

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

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

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

Apparently that’s a thing.

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

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

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

August 2013
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