A Commentary on Doctor-Patient Communication

Just looking for the journal paper?  It’s here:  Nemergut_Townsend_JPEM 
More explanation below…

A great deal has happened since we last provided any updates on Neva and her craniopharyngioma.  We have changed jobs, changed states, and she has changed schools (twice).  We have gone through the wrenching stress of a rushed MRI for the fear of new tumor activity, and felt the flood of relief when it came back all clear.  We have begun the routine of giving a nightly growth hormone injection to a five year old.  And we have watched our incredible daughter handle it all with balance and humor and staggering toughness.  She’s doing great.  Soon we’ll write more about all of this.

But for now, we want to share one outcome of Diana’s April 2014 trip to attend the Kraniopharyngeom meeting Dr. Hermann Mueller organizes in Germany every few years.  The meeting is connected to the largest, longest-running study of craniopharyngiomas, and brings together experts in the disease from all around the world.  We cannot begin to express how grateful we are to Dr. Mueller for his kindness and help to us throughout the past fourteen months.  Diana’s joke to him was that if we ever had another child, regardless of gender, that child would be named Hermann!

Hermann’s kindness included an invitation to Diana to participate in the conference – a priceless gift as we tried to sift through so many threads of information to make the best decisions possible for Neva. That participation was quite real:  she was allowed to give a talk about our experiences as parents of a child with a cranio, allowed to be part of all sessions and discussions, and then invited to write a paper for the conference special issue that was drawn from her presentation.  We share that paper via the link at the top of this post, published recently in the Journal for Pediatric Endocrinology and Metabolism.   We’re posting it here in case it helps any other parents just starting to confront the long, complicated and at times frustrating journey of helping a child with a cranio, or with any other complex medical condition in which multiple specialities must be involved.

A Difficult Goodbye

It all began, inauspiciously, in a March snowstorm now twenty years distant.

Deposited by an airport shuttle at the wrong hotel, my faculty interview at CU-Boulder started with a call to the search committee chair at 12:30 AM. The call followed twenty minutes of parking-lot-pacing anguish: I’m at the wrong hotel….I don’t know the right one…I’m supposed to meet the search chair for breakfast in seven hours….I REALLY want this job….what the hell should I do?? Devoid of other options and now damp with a layer of spring snow, I returned to the hotel lobby and asked the surly attendant to borrow a phone. (Riggghhhht….back in the antediluvian no-cell-phone era…)

The search chair was awake – because only two days prior, he returned home from the hospital with his newborn son. Not exactly how you want to start the interview for your dream job.

But he was kind and unflappable, my initial hint of what suffuses the extraordinary place that would become my professional home for nearly two decades. A tropical ecologist at heart, I’d never even heard of the Institute of Arctic and Alpine Research before my interview, and prior to my arrival I worried about fitting in.

Those were unfounded fears. I discovered it to be a place full of ideas and energy, a place where people worked all over the globe, a place distinctly lacking in ego. A place where a wide-eyed new professor was never unfairly judged, unsupported, or unwelcome. That was true at INSTAAR, my physical home, and in Ecology and Evolutionary Biology and the Environmental Studies Program, my companion academic departments. They were places where you could do your job as you saw fit, where you could take a chance and not be afraid to fail, where you could see and feel and know that your colleagues had your back.

It became a place that launched a career, collaboratively built as can be. A place where exceptional student after exceptional student passed through my lab, each one blending hard work and the joy of scientific discovery with some pure adventure and fun. A place where I could grow into some academic leadership roles of my own and in them find far more support than B.S, far more collaboration than conflict.

It became the place where extraordinary friendships were forged. The place where I would meet and marry the love of my life, the wedding officiated by one of those friends, attended by so many more, everyone overlooking CU and Boulder from a Flatirons perch as we exchanged our vows. The place where our daughter Neva would be born…and where a community would rise up in extraordinary and heart-melting ways to support our family as she confronted a cruel twist of fate in her still young life.

In short, a tough place to leave.

Yet this summer, that’s what we will do. We always knew it would take extraordinary circumstances to pull us away from Boulder, but those circumstances have aligned and soon our family will start a new chapter in North Carolina. Neva will enter kindergarten not in the shadow of the Flatirons, but in a land of azaleas and long-leaf pines. Diana will join the faculty of the Department of Biology at Duke University. And I will begin a term as Dean of Duke’s Nicholas School of the Environment. We are excited, and we are humbled, by the chance to launch these next phases of our careers.

But we are also a bit heartbroken. The University of Colorado has been more than just a place to work. It has been home. We are profoundly grateful for all the university has given us, for all that Boulder has given us. We will miss those dazzling blue mornings where the Flatirons are coated in fresh snow. Those runs and rides on endless miles of trails that wind amidst ponderosas and flame-red paintbrush and 300 million-year-old rocks that burst to life in the setting sun. Those days or weeks when you pile in the car and get lost in the unmatched grandeur of the West. The West that defined my childhood, that runs through my blood, that I never thought I would leave.

But above all we will miss a dilapidated yet loveable workplace, not for its asbestos-laden ceilings, but for the people who work below them. We will miss the field work and bike rides and impromptu dinners with friends so dear I find it hard to even finish typing this line.

We will miss the people who have made this home.

A Wrinkled Landscape

sam_piroWant to know why hills matter to how a tropical forest works?  Ask Dr. Samantha Weintraub (at right), who successfully defended her PhD thesis today.  Here’s the short story on what she found.

Everyone who comes to my lab is subjected to my occasional (ok, sometimes more than occasional) rants on how generalizations about ecosystem function are particularly dangerous in the tropics.  The very wonder of these systems emerges from their complexity, which plays out at so many scales.  Soils vary, species vary, climate varies, landform varies….hell, it all varies at scales from smaller than you can see to longer than you can fly even in a couple of hours.  You get hundreds of different tree species in a single hectare, some with lots of nutrients in their leaves, some not, some that grow fast, some that don’t.  Here’s just one example, in an image of canopy nitrogen from our study area, generated by Greg Asner using Carnegie Airborne Observatory data:


All those different colors are all different amounts of N in the leaves of different species — big differences on a level known to matter for ecosystem function — and all happening right next to each other.  And it’s not just about the trees. Some places are flat, some are steep.  Some are really dry part of the year, some are frog-choking wet.  Some are near the ocean and its rainfall full of essential nutrients; some are not.  And on it goes.

So the kinds of generalizations you often see (tropical forests are nitrogen-rich; they have poor soils; they are X, they are Y, they are Z…) may apply in some places, or at some times, but almost certainly don’t in others.  And yeah, you can make the complexity argument anywhere for any ecosystem, but the gap between generalizations and the reality (and importance) of heterogeneity is particularly big in tropical forests.  And that importance is not just academic – if you want to know how these systems may respond to a given global change, you need to get much of this right, from trees that differ over less than a stone’s throw, to the entire Amazon and beyond.

The nice thing is, with emerging new technologies like airborne remote sensing (among others), we can finally start pulling that off.  Put another way, there was a time when broad generalizations were almost unavoidable – it was just too damn hard to actually see and quantify the variation with basic boots-on-the-ground methods.  But now we can do better.

It was into this new landscape that Sam walked.  We had already learned that the nitrogen cycle of our study region in Costa Rica didn’t seem to behave like the textbook generalization of a lowland tropical forest – in other words, there was not a lot of free N floating around.  But….we also had seen some spots in the forests that seemed to have more N than others.  Was that a species effect?   Was it something else?  We didn’t yet know.

Sam’s new insight was that maybe part of the explanation was about the shape of the landscape.  Like a lot of Central American (and other tropical) forests, those on the Osa Peninsula are not flat.  Or more accurately, some aren’t flat.  Strip the vegetation away, and what’s underneath looks like this:


In other words, there are ridges, valleys, and lots of slopes of varying steepness.  In tropical regions with this so-called “complex terrain”, it reflects the work of climate and time (and yes, life too) on the legacy of past landscape formation.  E.g., a volcano forms, stops erupting, and then water, heat and time cut it all to pieces, slowly but surely.  Or sometimes, as on the Osa, those processes that are ultimately trying to suck the land back into the sea are working against the collision of continental plates, such that uplift is taking things one way while erosion is fighting back.  In between is life, which can exert its own influence on how the landscape is formed.   For example, the roots of trees can help keep a hill from sliding away….but when a tree falls over the ripping of those roots from below can also set off a pulse of soil loss.

Put it all together, and you get places that are, well, wrinkled.  Sometimes those wrinkles are densely packed and deep; sometimes those signs of age are less ever-present, with expanses of relatively smooth landscapes occasionally interrupted by an incutting cleft that foreshadows greater things to come.

And those wrinkles matter.  The trees change in form, size and identity.  The soils can look different….and indeed they are in ways that matter to how the ecosystem works.  For example, past work by Peter Vitousek, Stephen Porder, Greg Asner and others had shown that erosion effects how much phosphorus might be available in a tropical forests. Here’s an example from their work on Kauai, showing P in the leaves of Hawaiian forests:

Screen Shot 2014-04-04 at 5.55.56 PM

On stable ridges that are the remnants of a long dead volcano (purple colors), where the soils have been able to sit in place for a looooong time and just chemically weather away, most of the P is locked up or gone.  That’s the standard mantra for lowland tropical forests – old soils, highly weathered, P in short supply.  But move just a few hundred meters away onto a steep slope (yellow shades), and holy crap, lots more P!  Why?  Because those steep slopes erode….and when they do, the rock from below comes back up in closer contact with the surface soil and vegetation, and presto, new bank account of P.  This effect of erosion can be a big deal – the differences in the image above are on par with those created across millions of years of soil development.

OK fine, but does this matter for nitrogen?  Because, for the most part that doesn’t come from the rocks below, but from the air above.  It’s fixed or rained out from the atmosphere.  But still…could geomorphology matter?  That was Sam’s essential question.  She had wandered about the wrinkled landscape of the Osa, she had read an influential paper by Ron Amundson and others which contained some discussion of hillslopes and the nitrogen cycle, and she began to be convinced this could matter in tropical forests.

And turns out it does….but in the opposite way that erosion affects phosphorus.  In the Osa soils beneath that colorful canopy nitrogen image above, flat, broad ridgetops are rich in N….and the steep slopes next to them are much more N poor.  Here’s a whole bunch of her work boiled down into one graph, in which 8 different metrics of the nitrogen cycle are combined into a principal components analysis, with the three different shades being the flat ridges (RDG), the initial transition to steeper slopes (RST) and the steep slopes themselves (SLP).  For those of you who don’t speak-a-da PCA, this just says that on the slopes nitrogen is in much lower supply than on the ridges…with the transition zone falling in between.


Why?  Erosion again, as Sam showed in follow up work.  But this time, while the loss of that surface soil during erosion may expose new rock from below to enrich the P cycle….it also removes organic matter from above, and by doing so prevents N from accumulating as the ecosystem develops.   It’s like a cruel game of keep away — N comes in from above in biological fixation or deposition, starts to build up for a while, but wooosh suckah, a good dose of erosion sends it right down the hill and out of the system and everybody’s gotta start over again.  In effect, soil development starts over – or is at least chronically counter-acted by erosion – such that steep slopes are younger in their time course of development….and right in line with classic ecosystem theory, they are more N poor.

Figuring this out took Sam a hell of a lot of work, doing things like digging big holes in the ground right during the month when a meter of rain was falling on the joint:

sam october soil pit

But it paid off.  A really great piece of work that opened up whole new lines of inquiry in our lab.  In a collaboration with Bob Anderson here at CU, Cory Cleveland at Montana, Stephen Porder at Brown and Greg Asner at Carnegie – and all of their respective teams – we are trying to quantify how variation in species, landform and climate all interact across the region to set up a pastiche of different mini-ecosystems that in turn have distinct biogeochemical characteristics.  Ultimately, the hope is to take that knowledge and be able to generalize again….but in ways that account for the real variation these remarkable forests contain, at scales from individual trees up to hundreds of miles.

Congrats to the now Dr. Sam!  Well earned.

The New Normal

Yesterday, we had the luxury to begin considering what comes next.  Do we wait and see what happens with every quarterly MRI?  Do we push for focused radiation of some kind now? What’s the best course to follow for minimizing Neva’s chances of additional surgeries and maximizing her quality of life?  We began reading new papers, emailing doctors, gearing up for the steps to come.  Because no matter what, this is a lifetime deal, where waiting and hoping and fearing will always be an undercurrent, and where future treatment decisions are entirely possible.

Doesn’t sound like a luxury?   It’s not, of course, in many ways – who wants to think about remaining tumor fragments and associated risks to come.  There’s nothing we want more than for this to be one and done.  For the hardest stuff, if she’s lucky, it could be; or perhaps she has some big hurdles to come.  But after the intensity of the last few weeks, the simple ability to look forward months and even years was a welcome change.  And as we confront new decisions, we will continue to share what we learn in the hopes of helping others.  For now, what matters is this:

NEva_skatingNeva is doing great.

She is tormenting the dog.  She is putting on self-styled ballet performances.  She is going through ten outfits a day.  She is back to riding her bike around the livingroom. She is building solar system models, questioning the physics of Santa (and just about everything else), and transforming into a jigsaw puzzle wizard.  Yesterday, she went ice skating for the first time.

The best thing about all of these moments is that the raw emotion of each one is beginning to fade.  It’s starting to become routine that Neva is Neva once again.   No longer are we on the verge of tears at every passing instance of a kid simply being…a kid.

Until today.  This morning, she returned to her school for the first time in weeks.  It’s a place she loves, and with good reason – a great school, incredible teachers, a room full of terrific kids.  And it’s those kids who nearly took us down.  Neva was nervous about going back.  Shy, hesitant, sad.  Then we walked into her room.

One friend, another little girl, was on the couch, snowsuited head to toe.  Upon seeing Neva she bounced up and down, a smile ear to ear.   Soon after came the outside playground, where the rest of the kids were creating their usual good-natured chaos.

NEva_BJS_returnThey bum-rushed her.  Neva! Neva! Neva! they screamed, surrounding her and all talking at once.  You’re back, yay, you’re back!  One little boy, a complete dude in all ways yet also overwhelmingly sweet, tried to take her hand, saying Come see everyone and let me introduce you to my new friend!  Another boy ran frenetic circles around her yelling her name.  A third began singing a song, of which the only intelligible word was Neva.

And the first boy? Four years old, and out comes this: Neva, I missed you so much.  I prayed for you every night.

Try keeping your eyes dry after that.

Merry Christmas Everyone

We are in the hospital, which is not, of course, where we want to be.  Neva is not her typical bubbly self – and who would be when spending Christmas confined to a hospital bed and chained to an IV pole.  But she is doing fine, and we hope to go home by Friday.   The lumbar drain is working so far, in that we’ve seen no more evidence of CSF leakage.  Tomorrow will be the big test:  they will clamp off the drain and watch for another day.  If things remain dry, home we go.  Whenever we  get there, we’ll hold a slightly belated and overly celebratory run for the tree and stockings the very next morning.

IMG_6622Meanwhile, if the spirit of Christmas is about family and love and community, we are awash in riches.   Yes, we’d like to see Neva doing as she was in this picture from last year, but that will come soon enough.  We have what’s most important, and we still cannot believe how many people have reached out, in so many different ways.  So from our family to yours, thank you all for your incredible support over the past month.  May your own holiday be full of joy and love.

Back to the Hospital

Afraid so.  But nothing overly dramatic.

1514611_10202007987672602_1986592494_nThe leak of cerebrospinal fluid (CSF) that first occurred a week ago returned at a lower level soon after we went home last Friday, and continued on and off over the weekend.  As we’ve learned repeatedly, this whole process is a roller coaster.  It was terrific to be home, and as you can see, it gave Neva a chance to be reunited with her best buddy Coco.  But the return quickly turned stressful as we watched her leak CSF at a low rate, knowing it could mean a return to the OR.  And so it did.

CSF bathes our brain and spinal system.  Leaks of this fluid are an unfortunate but not uncommon consequence of any form of brain surgery, including the transphenoidal procedure Neva had 10 days ago.  Sometimes these leaks will self-repair without intervention, but CSF is under pressure within the human body, thus it can be difficult for a surgery-induced leak to fix itself against that pressure.  When self-repair alone does not work, a lumbar drain is placed in the patient’s spine, from which a small amount of CSF is then allowed to leak into a reservoir.  That lowers the pressure in the head, giving the leak a better chance to heal.

Neva had a lumbar drain placed about four hours ago now, followed by an endoscopic examination of her sinus cavity to see if the leak was large and obvious.  It was not, which is good news, and is consistent with the low volume of CSF leakage we observed.  The fact that the leak is microscopic means the pressure-release of the lumbar drain should resolve the problem.  If it does not, surgeons would eventually need to go back in and place another patch over the original surgical wound, but that is unlikely.  Lumbar drains resolve CSF leaks in the majority of patients, and Neva’s small leak just helps the odds even more.

1525314_10202024666489562_1545304691_nA downside?  We’ll be in the hospital for Christmas.  Lumbar drains are a three day deal at a minimum, so even if things go as quickly as possible, it will be Thursday before we can return home.  But we have a truck full of presents, and an unbelievably brave and resilient little girl.  She’s not thrilled to be back here of course, but she took it in stride remarkably well.  She even thought the “bunny suits” we donned before accompanying her to the OR were worth a good laugh and a family picture.  She inspires and humbles us at every turn.

Hoping for Home

The slab of concrete that constitutes the southeast quadrant of our driveway has been askew for years.   Its left side is uplifted about 3 inches, an offset that will send you sprawling occasionally, stumbling and cursing frequently.  The slab is a victim of subduction in miniature, for beneath it are the now decaying roots of a tree.  Or at least we hope they are decaying.   Over the years, the tree earned the nickname Freddy Kruger for its relentless ability to wreak havoc and never die.   When present in its original 40-foot glory, the largest branches would shatter and drop at the slightest provocation, targeting the neighbor’s cars with unnerving accuracy.

One day, a sketchy dude with a stringy blond pony tail and a neck tattoo appeared at the house and offered to cut the tree down.  We said have at it.  You’re the right guy to take Freddy out.  Down he came, but not without scattering jagged remnants of his bad ole self about the neighborhood.   Sketchy Dude struck back by pouring a nasty substance of unknown provenance on the now severed stump.

It didn’t work.  In no time, Freddy arose from and around the stump, having transformed himself into a budding forest of Freddylings, some of which jauntily grew from the cracks along the driveway slab itself.   We cut them down.  They came back undaunted.  We set a giant planter atop the stump, filled it with plants more acceptable to neighbors and driveway alike; Freddy grew around, through and over them.  Eventually we called in the experts and had the stump ground deep into the earth.  Take that, Freddy, we said.  In response, he popped up next to the mailbox.

Walk past the subducted concrete and Freddy’s clonal progeny and you’ll reach a half flight of stairs leading to our front door.  The stairs are not, as my father-in-law might say, up to code.  They creak, they pop nails regularly, they issue soft threats of partial collapse.  The lie beneath and just beyond a north-facing section of the roof, from which snow slowly melts, re-freezes, forms lethal icicles, and then coats the stairway with impenetrable frozen layers that remain weeks after the rest of town basks in warm winter sun.   The phenomenon depends in part on a useless gutter system we should have replaced long ago, and is admittedly worsened by our unreliable show shoveling habits.

If you make it to the front door, try to do so in the daytime, for the motion-detector that activates the porch light is on a devious and unalterable sixty-second delay.  Or longer.  Or it might not work at all.  The storm door is similarly touchy, having been bent (and, um, not fixed…) years prior; if it’s in a mood, it might hit you in the ass.  And the doorknob on the main door….well, you get the idea.

Neva_me_thursday_AMNever have we so wanted to see the flaws that lead to our front door.   If all continues as it has over the last thirty-six hours, it will happen tomorrow.  We are out of ICU, Neva’s possible CSF leak has not recurred, and her fluid balance remains good.  For the most part, she is back to her sassy and inquisitive self.  Tomorrow, she will have the post-surgical splints removed from her nose, as well as a final blood draw.  She won’t like either one at all, and they will be high-stress moments, for if a leak remains that’s when we’re most likely to see it.  But if she passes those hurdles, home we go.  We might even be tempted to give Freddy a hug.