Repair Comfort. Decommission War.

This past weekend, when it was markedly warmer here in Boston, the aircraft carrier USS John F. Kennedy was in Boston Harbor prior to being decommissioned (links to lots of photos are available through the most-excellent Boston Blog site Universal Hub).

Now, I’m not big on war, as you may have gathered here. But there is something about seeing a really, really big ship. Maybe it’s just coded for on my Y chromosome. I caught a glimpse of the ship coming into Boston Harbor as I drove home across the Tobin Bridge on Friday morning, and so on Sunday I figured I’d scooter on out there and have a look myself. I wasn’t about to stand in the 5-hour-long line, but I figured I’d snap a picture or two, which I did:


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What was much more interesting to me was to see that the U.S.N.S. Comfort, the navy’s “floating hospital” ship, was also here to be worked on. Let me tell you something: the U.S.S. Comfort was more impressive for it’s size. It’s huge. The pictures I took don’t do it justice. The ship is over 270 meters in length (that’s nearly 1/5 of a mile). Here are a couple of snapshots:


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There’s a much better photo gallery of the Comfort available here. I rather like the juxtaposition: the hospital ship is in for repairs so that it could continue to serve. The warship was being decommissioned and is going to be mothballed (which I overheard from a navy officer as I was walking to take pictures).

For the love of spiders …

lrg-2-spidercatcher

OK. This has nothing to do with medicine, oncology, hematology, or health policy. It’s just something fun. And to some extent it was prompted by an episode of On Point with Tom Ashbrook (WBUR) featuring Greta Binford, an arachnologist, and her adventures with (ugh) spiders. You can listen to the show here and see some of her photos here.

I am moderately arachnophobic, which is one of the (many) reasons that I was not a big fan of living in Cincinnati when I was there for my residency. It was just warm enough there to have plenty of creepy-crawlies. It seems that the climate here in the Northeast makes for a less friendly environment. Either that or the cats have been eating the spiders before we find them.

That being said, I’m not a big fan of killing living organisms. So I was thrilled to hear about the spider and environment-friendly Spider Catcher (pictured above). This gadget apparently allows you to capture spiders without squishing them against the wall.

The ad says it all:

The Spider Catcher is approximately 65cm long which is enough to keep you at a comfortable distance while you pickup and transport the spider or insect to a safe relocation. Perfect for awkward corners or reaching up high, there’s no longer any need to put your back out in your attempt to catch the unwanted pest!The innovative Spider Catcher is capable of catching many different insects, so if you’re plagued by flies or if there’s a dead wasp on your windowsill, the unique bristle head on this fantastic device enables you to gently catch the insect, carefully trap it and then release it outside. In fact, the Spider Catcher is so gentle, you can even use it to capture butterflies and moths without causing any harm to their delicate wings.

Apparently this brilliant device comes from Britain.

Where do you serve the subpoena? The Hall of Justice in Metropolis?

So here I am, trying to do some serious writing tonight, and the table of contents for this month’s Archives of Disease in Childhood shows up in my inbox. Six out of ten times I don’t even bother to read through it, even though I’m an ad hoc reviewer for it, and even though it’s brought to us by the good folks at the British Medical Journal (one of my favorites).

For some reason – maybe I just needed a break – I scanned through the e-mail and barely noticed this one word fly by as I was scrolling quickly through the message:

“Superhero”.

I did a double-talk in front of the monitor. Superhero? This has to be good. I scrolled back and sure enough, right in front of my eyes, was the title of journal article:

“Superhero-related injuries in paediatrics: a case series”

I thought, “This has to be good. Certainly worth looking up.”

A few minutes later and I have the paper up on my computer, and staring me in the face is its one and only figure:

snapshot
So, what’s this paper about, you ask? Well, here’s the scoop:

Five cases of serious injuries to children wearing superhero costumes, involving extreme risk-taking behaviour, are presented here. Although children have always displayed behaviour seemingly unwise to the adult eye, the advent of superhero role models can give unrealistic expectations to the child, which may lead to serious injury.The children we saw have all had to contemplate on their way to hospital that they do not in fact possess superpowers. The inbuilt injury protection which some costumes possess is also discussed.

The authors discuss a short case series here. The first, and most detailed, was of a 6-year-old boy who suffered an unwitnessed fall from a 1st floor indow while wearing Spiderman outfit seen above (note the “anatomically correct upper body muscle padding”). In doing so he earned a head bonk, a swollen eye and an injured foot. He had been pretending to be Spiderman and had climbed out of the window. The other four cases were also falls: three kids pretending to be Spiderman, and one pretending to be Superman. As the British authors put it (in that oh-so-British way):

“They were injured after initiating flight without having planned for landing strategies.”

Brilliant. Only the British can make something like this so amusing.

The authors indicate that while they are strong advocates of adventerous play and while they also understand that risk-taking is an integral part of childhood, they caution that parents need to be aware that children may believe that their abilities “have been given a super-boost” with an appropriate costume. They add the following warnings:

Parents whose children dress up as Bob the Builder should understand that hammers and saws are highly likely to be used in play. The parents of Spiderman afficionados should ensure that windows are correctly closed and locked. Superman’s parents may find it easier to encourage their children to wear glasses, and Wonderwoman’s parents may wish to give early fashion advice and not tell lies.

I looked in Medline to see what a search for “superhero” turned up. There are exactly five previous citations that include the word “superhero”. The authors cite what is apparently the seminal paper on the phenomena published in German in 1992 in Praxis der Kinderpsychologie und Kinderpsychiatrie. Entitled, “Dangerous comics – only a fantasy?” this paper considers whether or not the violent fantasy world of comics leads to violence in children. Their work indicates:

Comics with their regressive pull and their independent superhuman heroes represent the archaic world of narcissism unconscious, unwilling to develop and conservative. Violence serves to maintain the original state or regain a harmonious “paradise” … Thus superhero comics are only dangerous for severely disturbed children.

Apparently not.

This being America, and not Britain (which apparently has a better sense of humor about these things), leads me to wonder when we’ll be seeing tags on Spiderman costumes stating: WARNING – THIS COSTUME DOES NOT PROVIDE ACTUAL SUPERPOWERS. DO NOT ATTEMPT TO LEAP FROM BUILDINGS, TREES OR OTHER TALL STRUCTURES. Or when the first lawsuit will come up.

In any case, my point was not so much about the lawsuits, or even the phenomena of children pretending to be Superman and attempting to jump from roof of the garage while wearing a cape made of an old bedsheet. My point is more along the lines of how much fun it is to look at the world with the eyes of a physician or scientist and witness the various oddities of human behavior. Especially with children. It’s the best part of the job. My hat is off to the authors of this fun little paper – first, for taking the time to recognize the patter; second for having the initiative to write it and submit it; and third, for doing it with such style.

You can download and enjoy the paper here.

Nice Legs. Who owns them?

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You may be wondering whose owns these legs, and why they’re clad in little red and white ribbons. I was wondering that myself, as I was leafing through this week’s American Medical News. It turns out that they belong to television host Meredith Vieira, who apparently rented them to the pharmaceutical giant Sanofi Aventis. Sanofi, it turns out, happens to make enoxaparin, also known as Lovenox® – a low-molecular weight heparin. Meredith and Sanofi have been co-promoting a DVT (deep vein thrombosis) awareness campaign on NBC and MSNBC. To be fair, if any multinational conglomerate television network is going to have a reason to publicize DVT, it’s NBC. Remember that they lost one of their reporters – David Bloom – to a DVT. In any case, it turns out that someone has designated March as “DVT Awareness Month”. Well, not just somone. Brian Dorgan (D-ND) and Arlen Specter (R-PA) managed to pass Senate Resolution 56 on March 2, 2005, which I guess makes it official. Sanofi-Aventis funds an organization called Coalition to Prevent DVT which is driving the current advertising campaign and the DVT awareness month.

Fancy that.In a way, this is clearly a worthwhile effort. As part of my training, I’ve done quite a bit of pediatric hematology and have seen my fair share of deep vein thromboses. I’ve also seen enough pulmonary emboli to make me fear them, and enough venous stasis disease to recognize that the damage done by DVTs is more than just a clot or an embolus. That being said, I am a little uncomfortable that the company that makes one of the main medications for the treatment of DVTs and PEs has co-opted a public figure into doing their advertising. There’s been a huge push to have the relationship between pharmaceutical companies and physicians stripped to is most minimal connection, or severed altogether. People worry that a click pen or pad of PostIt notes will unduly influence physician prescribing habits. Fine. I prefer by non-branded pens and sticky notes anyway.

But I can tell you this: Meredith Vieira reaches 10,000 or 100,000 or 1,000,000 times as many people per day as I do, and going by absolute numbers of people influenced, she clearly wins. However, I don’t see anyone questioning her relationship with a pharmaceutical company. If Sanofi wanted to fly her to meetings and put her up in a nice hotel, I doubt we’d hear people criticizing her objectivity. But have a drug rep a group of starving residents a pizza to get them through a 30-hour shift and stop the presses … we have physicians being corrupted by industry. Thoughts?

“You don’t mind if I tape this, do you?”

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A couple of weeks ago, when I had a serious bout of insomnia, I stayed up until past two o’clock in the morning watching All The President’s Men. It’s one of my all-time favorite movies.I noted the absence of tape recorders as the fictionalized Woodward and Bernstein went about their investigations. This was, of course, 1972, and microcassette recorders weren’t available for $19.99 at your local Staples. It gave me a chance to think about how much easier life is given our ability to record experiences as they happen. We have, as a society, gone far beyond just tape recorders. They’re actually considered quaint. What, with everyone putting everything on the Internet as a podcast or YouTube video, or people recording things with their cell phones, the little cassette recorder that I bought back at the beginning of medical school is practically an antique.

I thought about this long-lost tape recorder when I came across an abstract of an article that appeared recently in the British Medical Journal regarding audiotaping of neonatal consultations. The article, entitled “Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial” (BMJ 2007; 334;28-31) tested whether providing mothers of children in NICUs with audiotapes of their conversations with their doctrs helped the parents to recall information and whether or not these tapes helped with their psychological wellbeing. It is clear that parents of children in NICUs, and in fact many parents with children who are critically ill, often do not remember all of the information that they’re bombarded with.

In my experiences, this is also quite true on the pediatric oncology service – at least in the days or weeks immediately following a new diagnosis. One of the things that I tell parents at the time of diagnosis is that they will likely not remember much of what I say after the words “I think your child has (insert cancer diagnosis here)”. We compensate for this on our service by repeating things over and over, as well as by relying upon many other teachers, including nurse educators, primary nurses on the wards, and primary nurses in clinic. By the time a child has reached the end of their first few weeks of chemotherapy, their parents have had a pretty good education in the the nuts and bolts of caring for a child with cancer. By the end of the first few months parents are pretty savvy, and by the end of a year many know as much about their child’s disease as any of the hospital residents.

That being said, the initial few days are usually a blur, and of course that’s when the “big talk” takes place. By “big talk” I mean the initial informed consent discussion to initiate therapy. We call this the “Day One” talk where I work. It usually is a formal sit-down talk between the family (and whoever the family wants present), the patient’s primary nurse on the ward, the pediatric oncology fellow covering the inpatient ward, and the pediatric oncology attending. Learning how to conduct a Day One talk is one of the most important things learned during the first year of fellowship, and it comes from watching and listening to attendings give good (and sometimes watching and listening to not such good talks). One also learns a great deal from seeing how different families react. Some are so antsy to start treatment that they don’t seem to really want to sit through a 90 minute discussion of the different side effects of the different medications, the various risks and benefits, and the minutae of treatment. They want to sign on the dotted line and get the first dose of chemotherapy in. I don’t think that these families are nonchalant about the details of their child’s care – rather, I think that the amount of information floods an already busy switchboard.

Some families, on the other hand, want every detail and then some. Some bring aunts or uncles or other relatives who have backgrounds in medicine. Some are meticulous note-takers.

A couple of years ago, when I was a relatively new 1st year fellow, a family brought a tape recorder into the room and set it down right in front of me. I can’t remember whether or not they asked me if I would mind being taped (I think they did), but I remember being weirded out by it and telling them that I’d prefer not to have my every word recorded. In the few minutes that I had to react to this, I felt a combination of fear and uncertainty. I wasn’t sure that I was going to do a 100% perfect job (being relatively new at the whole oncologist thing) and I didn’t want that to haunt me at some point later. To be honest, I was afraid that something catastrophic would happen to the patient – something that I wouldn’t have covered in my consent discussion – and that the next time I saw that tape recorder it would be in the hand of a stern-looking malpractice lawyer.

Today, a couple of years older, wiser, and more confident in my understanding of my chosen profession, I believe that I would want that family to record the discussion. In fact, looking back, I wish that all of these types of conversations were recorded. I’m almost surprised that they aren’t, especially when one considers the amount of thought that we give to the Day One talk.

Turning back to the BMJ study of mothers in the NICU, the initial conversation (similar to our Day One talk) as well as subsequent conversations deemed important by the attending neonatologists, were taped and the mothers received a copy of the tape. The results of the study showed that 91% of mothers listened to the tape after one week and 95% listed at least once over the first four months. The mothers who received tapes of these conversations were, as you could imagine, more likely to recall the different diagnostic tests, treatments, and outcomes that were explained to them. There were 6 (of 98) mothers in the control group – those who didn’t receive a tape – who were unable to recall any information from their discussion with the neonatologist.

After reading this paper, I immediately wondered whether or not this has been tried in oncology. It turns out that there’s a fairly substantial literature for the use of taped informed consent discussions in adult oncology. It also turns out that many institution’s websites that discuss clinical research trials recommend patients taping the informed consent discussion, including UCSF, MD Anderson, and the website for the National Cancer Institute.

It also turns out that taping “Day One” talks has been looked at, at least once, in pediatric oncology. There was a paper published in the Journal of Pediatric Hematology/Oncology entitled, “Audiotaping Communication of the Diagnosis of Childhood Leukemia: Parents’ Evaluation” (J Ped Hem/Onc 2003; 25:5) that, while not a randomized study, was notable for the fact that the authors collected their data from January 1997-December 1998. The study was based in Italy, and my review of the medical literature (a cursory review of “related articles” in PubMed) didn’t find any US based studies.

I’m curious as to how this would go over here in the US. I would bet (although I don’t have any data) that many parents of children with cancer would have appreciate having a tape to review at later date. I would also bet (again, without any supporting data – just a hunch) that there would be very few instances of these tapes being used to prosecute a physician in the event that the patient suffered a bad outcome. Given the remarkable problems in health literacy (problems that involve both health care systems as well as patients) one would think that a tool as simple as a tape recorder would be more widely used for complex discussions such as informed consent for chemotherapy. I’m curious what Paul Levy over at Running a Hospital would say about this small idea. I’m also curious to hear what any parents of pediatric oncology patients (or oncology patients themselves) would have to say.

I think that now, being a little more experienced, and a lot more comfortable with the words that I use, I see the benefits to this technique to far exceed the risks. Moreover, I believe that offering parents the opportunity to tape one’s important discussions with them telegraphs a message of confidence and trust, and would go a long way to establish rapport at a very important moment in a family’s life.

When you care enough to send the very best …

I was driving back from my overnight moonlighting gig this morning … well, driving may not be the best word choice. I was inching my way down Route 1 in the middle of morning rush hour traffic, with my trusty coffee at my side and WBUR on the radio, and exercising my extraocular muscles by doing every other minute eye rolls during the report on the Senate’s inability to vote on whether or not to have a vote on a non-binding resolution regarding Iraq.

As you can imagine, I almost choked on my blueberry scone when I heard a little blurb reporting that Hallmark, the greeting card behemoth, has just launched a new line of greeting cards for “life’s more difficult moments”. Like (and I’m serious here) struggling with an eating disorder, quitting smoking, caring for an aged parent, miscarriage, and traumatic loss, such as someone dying in an accident or homicide. They have cards for thanking a hospice worker or organ donor’s family. Cards for waiting for test results. Oh, and of course, the new line of cards also includes those for people tackling cancer diagnoses, treatment, and hair loss. A $2.99 greeting card for chemotherapy-induced hair loss. My goodness.

As reported in this news story:

Others are more happy and even humorous, celebrating a year being cancer-free, nearing the end of chemotherapy or general encouragement for teenagers. There are even a few birthday cards encouraging the recipient to celebrate even though they’ve had a rough year.

Some cards feature whimsical or inspiring photographs – a baby making faces, a marathon runner – but the majority feature abstract designs or just words in flowing script. Card designers said they aimed for bright colors that matched the mood of the card, ranging from bright orange for the more hopeful cards to purples and blues for somber notes …

No topics were off-limits, said company spokeswoman Rachel Bolton, noting two cards that could be sent to gay people who have disclosed their sexuality. The cards don’t directly refer to homosexuality, only extolling the person to “Be You” or “This is who I am” or featuring a rainbow, a symbol of gay pride.

I suppose that this was inevitable. My question is why? The news report on the radio said that Hallmark was doing this in response to feedback from people indicating that they were unable to find cards to express these thoughts. Are moments in life like this so difficult to ponder that people would rather pay $2.95 to buy a pre-made sentiment than take pen to paper in order to write out their own thoughts and feelings? Have we become so used to prepackaged goods that we now need to look for something similar for our emotions?

Even the card writers seem to raise this issue:

Writing the cards proved a challenge because the messages were designed to take a more personal approach than the standard sympathy card, said card writer Sarah Mueller.

“You can’t send somebody who is seriously depressed a ‘cheer-up’ card because it’s insulting and it doesn’t help,” Mueller said. “That’s what depression does, is it makes you feel like you’re all alone. So just being able to write something, the attempt was just to say, I’m here.’ ”

Fellow card writer Linda Morris said society has become more open to discussing people’s feelings on difficult topics, such as divorce or drug recovery or serious illness, which is why people are demanding cards that deal with those issues.

“There was a time when we weren’t so detached, when writing a note to someone was very simple, when picking up the phone and calling was just what you did,” Morris said.

Have we really moved that far away from each other that we rely upon a faceless corporation to help us express our compassion for each other during times of illness or other difficulty? Are people really that averse to calling or writing someone with cancer? I’m not sure how I’d react to someone sending me manufactured best wishes instead of calling to ask me “are you OK?”.

A few weeks ago there was a flurry of stories about the difficulties that physicians face in having difficult conversations with their patients. After hearing this story, it is increasingly clear that this is not a problem solely with physicians. This is a problem with people in general in our modern world. These cards are not part of the problem – they’re a symptom.

Twisted Bowels

 

Ok. That’s a pretty unpleasant title for this rant, but then I awoke to an e-mail from one of the news aggregators I use proclaiming “FDA issues warning on rotavirus vaccine”.

I quickly turned to this story worried that the VAERS (Vaccine Adverse Event Reporting System) had picked up a cluster of intussception on the new oral pentavalent rotavirus vaccine. Here’s how the AP reported it:

FDA: Rotavirus Vaccine May Harm Infants

By THE ASSOCIATED PRESS
Published: February 14, 2007
Filed at 12:40 a.m. ET

WASHINGTON (AP) — The government warned on Tuesday of potentially life-threatening twisting of the intestines in infants vaccinated against a virus that is the leading cause of early childhood diarrhea. The condition, called intussusception, is the same that led to the withdrawal of the first rotavirus vaccine eight years ago.

The Food and Drug Administration said it was unknown whether the recently approved vaccine, called RotaTeq, caused the 28 new cases. The condition also can occur spontaneously. Indeed, the reports don’t exceed the numbers expected to occur naturally each year — the so-called background rate, the FDA said.

”It looks like this is the natural background rate that we are seeing,” said Dr. Michelle Goveia, medical director for pediatric medical affairs at the vaccine’s manufacturer, Merck & Co. Inc. Goveia suggested heightened concerns about the previous vaccine, made by Wyeth, prompted the FDA to act.

In Tuesday’s public health notification, the agency said it wanted in part to encourage reporting of any additional cases of intestinal twisting or blockage to help it assess any risks associated with the three-shot vaccine series. It also said the vaccine’s label would mention the cases of intussusception.

‘It’s a known serious, life-threatening adverse event that is being seen at an expected level postmarketing. But because it is so serious, we asked the company to change the label,” FDA spokeswoman Karen Riley said.

Dr. Paul Offit, the vaccine’s co-inventor, said the 28 reports were well below the hundreds of cases one would expect naturally. He suggested the FDA wanted to ‘’shake the tree” for more reports about the vaccine.

”I am actually encouraged by those data: 28 cases, when you would have expected at least 500 cases, that is really reassuring,” said Offit, of the Children’s Hospital of Philadelphia. ”I don’t see how those numbers suggest something’s awry. If anything, they suggest nothing’s awry.”

The 28 cases included 16 infants who required intestinal surgery. There have been no reports of deaths.

RotaTeq received FDA approval in February 2006. At the time, the FDA and Merck said trials of the vaccine involving nearly 70,000 infants indicated it did not increase the risk of intussusception. But Merck and the Centers for Disease Control and Prevention are conducting follow-up studies of tens of thousands more infants to track any long-term effects of the vaccine. The FDA also is monitoring reports.

About 3.5 million doses of the Merck vaccine have been distributed in the U.S., though not all have been used, the FDA said.

The earlier rotavirus vaccine, Wyeth’s RotaShield, was pulled from the U.S. market in 1999 after it was linked to a small increase in intussusception. It had been on the market a year.

In the United States, rotavirus sickens about 2.7 million children younger than 5, sends up to 70,000 to the hospital and causes 20 to 70 deaths each year.

Now, for anyone who knows a lick of pediatrics, it’s possible to find four major flaws with this story, flaws that reveal what are clearly the machinations of a bored and not-so-bright Associated Press flunkie who had nothing better to do than to twist an FDA release into a story designed to scare parents and physicians.

  • First, intussception is not a “twisting of the intestines”. It is a telescoping of the small bowel. Malrotations and intestinal volvulus (twisting of the intestions) are most definitely not associated with rotavirus vaccine.
  • Second, the current rotavirus vaccine is a three-dose, orally administered vaccine. Not a series of injections. It is hard to trust reporting on a vaccine when the author didn’t care enough to fact check correctly on something as simple as the difference between a vaccine given by injection and by mouth.
  • Third, the story buries in the second paragraph the fact that intussception is a naturally occuring phenomena and that the background rate in children is 1-4 cases per 1000 live births.
  • Finally, the story entirely mischaracterizes the FDA report (which you can read here and interpret for yourselves). The report clearly states, “FDA is issuing this notification both to encourage the reporting of any additional cases of intussusception that may have occurred or occur in the future after administration of RotaTeq (the vaccine brand name), and to remind people that intussusception is a potential complication of RotaTeq.”

I could go on and on about the clinical trial that preceeded the rotavirus vaccine, and also go on and on about the previous rotavirus vaccine and it’s safety issues (and perhaps later I’ll touch up this entry with a link to a fascinating NEJM article on the topic). But my point for this morning is that rather than take the time to accurately report facts, some healthcare journalists (or in this case, wire services) slap stories together with headlines designed to scare patients and families rather than inform them. I can’t wait to see what my friend Flea does with this one.

Evangelical Oncologist

I don’t know if it’s the shorter days of winter, or the busier days in the laboratory, but nearly two weeks have passed since I’ve written anything here and it seems like only a few days. It is certainly not for lack of good material. I keep two folders – one on the desktop of my computer, and one in my backpack – of items that catch my interest and would make for interesting launching points for essays. As a result of my little hiatus, both of these folders are now bursting with material.

I’ll have you know (if you care or not) that the time away from the weblog has been time well spent. I finished a couple of Ian Rankin mysteries and am halfway through Philip Roth’s The Plot Against America. I’ve also been doing some home upkeep having discovered the magic of Elfa shelving, and most importantly, we got a little rest and relaxation time in this past weekend with a quick trip to New York where we ate and ate and ate (as you can tell, we spent our time on the upper West side).

It was at a deli that I snapped this picture:

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My grandmother would order several of these given the chance, by the way.

You know, when I saw this sign, my first thought was that it seemed awfully quaint, the notion of grandson-doctors being so revered. In fact, in this age of less-than-satisfied healthcare consumers, the idea of any doctor being revered seems a little hokey and a little outdated. I snapped the picture more for what I felt was irony that the only place that one would celebrate someone becoming a doctor would be in a New York deli (and a faux-deli at that, what with Artie’s being only 6-1/2 years old).

Well, today I had an set of experiences that made me have a little hope for the way the profession is viewed. As I’ve mentioned before (and will invariably mention more frequently in the near future), I am involved in the Pan-Massachuetts Challenge, a 192-mile bicycle ride that raises money to support the Dana-Farber Cancer Institute. And, as I’ve mentioned, last year I raised a little bit of money in honor of my patients and their families. I was very lucky to have the staff of the PMC take notice and as a result I was invited to talked to the first-year PMC riders who raised more than $6,000 each – no small feat in these days of tight household budgets.

I was told that I’d have 10 or 12 minutes to speak, which is a fair bit of time if you plans things properly. Having been so busy in the lab, I didn’t have all of the time that I would’ve liked to prepare in advance. A month of so ago I scratched some barely-legible notes on the back of a piece of paper that I’ve been carrying around in my backpack, but it wasn’t until 10:30pm last night that I had time to try to make a speech out of it. It took me about three hours, but eventually I managed to assemble something that seemed pretty good. One of the themes that came out of this speech was the need for oncologists to talk more about what it is that we do. This is not such an easy task. I can tell you that nine out of ten people who learn that I’m a pediatric oncologist look at me as if I just told them that my dog had been run over by car. One out of ten, on the other hand, “get it”. They understand how amazing this work can be, how lucky we are to be able to serve our patients, and the joy of living that comes from living the full range of emotions with your patients. In order to make the other nine people open their eyes to the needs of oncology, it’s going to take a little something more than just showing them pictures of kids without hair. It’s going to take a little evangelizing.

I’m going to reprint the speech pretty much in full, because I think that it gets the point across. It was written to inspire those who rode in the PMC last year to gear up for another year of fundraising. However, I hope that it will inspire the occasional reader here to consider enlisting in my efforts this year.

First, I’d like to thank Jothy [a 35-year survivor of osteosarcoma] for the generous introduction. I had the privilege of meeting Jothy a month ago after Billy [the director of the PMC] introduced us, and was immediately captivated. He doesn’t know it, but he has come to represent to me the most vivid and exciting picture of cancer survival that I’ve seen – and one that I am excited to paint for my patients and their families. In fact, I truly long for the day when my five-year-old patients are his age – hmm … that would be, what, thirty years from now, Jothy? As I said, thirty years from now, when, in between telling them that seventy really is the new forty, and yes you can can still practice medicine at this age, and yes that really is my real hair, I will look forward to seeing them and hearing how their lives unfolded.

I’d also like to thank Billy, Meredith and the entire PMC staff. I certainly never expected to be standing here. It is because of the event that they’ve nurtured for twenty-seven years that I have the opportunity to share my thoughts with you today.

I must admit that it took a great deal of time and thought to determine what I wanted to say this morning. I usually have no problem going on at length – in fact my patients, their parents, and the medical students and residents that I’ve taught, my wife, my brothers – all of them would likely say that in fact I do have a problem: that of going on at length. But often in those cases I’m in a position where I have some bit of knowledge to convey or share. This morning is somewhat different.

To some extent, I feel as if I’m preaching to the choir. You would not be seated here, enjoying this breakfast, were it not for your remarkable accomplishment as first-year riders in the Pan-Mass Challenge. I probably have little need to inspire you to raise money to support the fight against cancer – you clearly are a motivated and inspired group. I also have no doubt that many of you are personally connected to the field of oncology – perhaps by a parent, a spouse, a friend, or a child. So instead, I’ve decided to share my inspiration for last year’s ride and fundraising with you – not so much to convey a strategy or a technique – but rather to share with you a mindset, and a way of seeing the role you play in the lives of the people around you.

As Jothy mentioned, I’m now a 3rd year fellow in pediatric oncology. A little over a year ago, in December of 2005, after hearing about, and thinking about the PMC, I had a vision, and a sense of possibility that was exhilarating enough and powerful enough to bubble up through the pain, the tears and the exhaustion that comprised what had been the previous 18th months spent as a clinical fellow in pediatric oncology at the Dana-Farber Cancer Institute and Children’s Hospital Boston. This was no small thing, I might add. It is not really possible to describe in the time allotted, and in fact may be impossible to describe in any reasonable amount of time, the singular experience of becoming a pediatric oncologist. This goes far beyond the long hours, the time away from my wife and friends, and the sheer volume of information to be integrated. It has to do with the unique role that pediatric oncology fellows occupy in the care of their patients. From our very first day, we are assigned patients as they come in – often a day or two after their initial diagnosis – and they are ours to care for much like we’d care for our own children. They become as much a part of our lives as we become of theirs. I embraced this role as tightly as I’ve embraced anything in my life and as such I had the privilege of walking every step with dozens of children suffering from dozens of types of cancer. In 18 months I had experienced more of life than I had in 38 years.

When the opportunity arose to participate in the PMC, I jumped at the chance. I didn’t worry for a moment about the fundraising because I knew that if I could simply find a way to share with others what I had witnessed in my training, it would be impossible for them to not want to help. The care of children with cancer had become my mission – that research could provide cures had become my faith – that children should not suffer from cancer had become the central tenet of my faith. I knew that what I had to do was, quite literally, become an evangelical oncologist. Now, I know that this is an odd construction, especially for a lapsed Jew from New Jersey. But after hours spent trying to find a more politically correct way to phrase it, I’m convinced that this is the only one that works. I will, however, tell you that the dictionary definition of the word evangelize is, “to be an advocate for a cause: to try to persuade other people to share enthusiasm for specific beliefs and ideals.”

Having lived and shared in the victories and defeats borne by my patients and their families for 18 months, there were days that I wanted to stand atop the Dana-Farber and howl at the world and compel them to see, feel, and taste what I have since come to believe is the purest distillation of the course of human lives – to fight cancer as a patient, a loved one or a physician is to explore the full range of human capacity. I wanted everyone to feel the sensation of the air being evacuated from a small emergency department exam room as the words “I think that your child has cancer” are spoken. I wanted everyone to hear the nearly audible grinding of mental and emotional gears, and the sudden derailleur of what had been, until then, the smoothly functioning mechanism of a family’s life. I wanted people to bask in the bittersweet glow of the first smile that follows the news of a remission hard won, a smile restrained by the knowledge that months or years of treatment, and an uncertain future lay ahead. I wanted the world to feel the weight on our shoulders as we attempted to steady ourselves prior to giving the news of an unexpected relapse. I wanted the world’s spine to be frozen, as is mine every time I hear it, by the unnatural, desperate, and unearthly howl emanating from the deepest recesses of a parent whose child has just died.

I wanted the world to hear, see, touch and feel these moments because I had faith that upon doing so, the ephemera that occupies so much of modern life might be set aside, even for a moment, allowing others to have a taste of this eau de vie – this essence of life. And so with the permission of the parents of the children I cared for, I wrote their stories and shared their pictures with as many people as would listen. And it worked. Beyond my wildest expectations.

And so it is with a sense of humility and privilege that I look forward to riding in this year’s Pan-Mass Challenge. And once again I will ride to celebrate the lives of those who give purpose to the remarkable work done at the Dana-Farber, and who, in fact, give purpose to my own life. I will ride as a means to share, with anyone who will listen, the triumph of four year old Christopher (*not real name) over acute lymphoblastic leukemia – a little boy who looked up at me with pride just yesterday, to tell me that “of course it didn’t hurt when my port was removed because I was asleep”. And I will ride in order to share with people that four year olds should not ever know what a port-a-cath is, and nor should they bear such scars on their chests. I will ride in order to let people know about the fight waged by Marvin (*not real name), a three year old boy with leukemia – but just as much to tell them about his father, a large and burly contractor, who despite our being worlds apart from each other in experiences, from time to time, will confide in me fears of relapse and his sense of helplessness as he walks hand-in-hand with his son into a future filled with a lingering sense of uncertainty.

I will ride to spread the story of Douglas (*not real name), a little boy diagnosed with a spinal cord tumor two days before he was born – a child whose ability to walk today was made possible through the most extraordinary efforts of a team of over forty people. And I will ride in honor of his parents who have honored us by allowing us to care for their child. Their lives have been upended as a result of his medical needs but I will ride to let people know that despite what may very well be years of rehabilitation, they have never taken for granted what is truly a modern medical miracle. And this year I will dedicate my ride to my patients Allison and Jeff – two teenagers who died last month, Allison of complications of a stem cell transplant and Jeff of Ewing sarcoma. I could go on for hours about each of them, their courage, and their suffering, and while I will be riding in each of their memories, I will also be riding to let the world know that we should never see children lined up outside of a funeral home to mourn their friends.

I will ride so that I can share with people all that I have learned by bearing witness to the lives of these children and their families. I ride to share with others the gift given to me by these children. It is the gift of their strength – the resiliency and an untarnished hope that pours forth effortlessly from these children – a strength that somehow manages to support and inspire their parents, their siblings, their doctors and their nurses. It is this effortless love of life that breaks through their disease and makes the Jimmy Fund Clinic one of the least unhappy places I know.

These are the reasons that I ride – they are the sum of my experiences and the product of my beliefs and ideals. Yours may be the same. They may only overlap. They may be entirely different. No matter. It doesn’t change the message that I hope to leave you with. When you go forward to tell others about your next PMC ride – whatever your motivations are in this fight against cancer. Whatever brought you to this place and moment in your lives. Whatever it is that makes you willing to pedal that one next mile. Tell everyone. Be an evangelist for this cause. Broadcast your faith in our ability to fight this disease and the importance of our efforts. Allow the passion that got you here today to infect others and spread from person to person. Come to the Jimmy Fund Clinic – sit in the waiting room and let that essence of life touch you – and then go out and touch others.

The feedback that I received from this leads me to believe that it is still possible for physicians to be viewed with a less jaundiced eye – it will take a little bit of evangelizing on our part, and a little bit of faith on the part of our patients, but I believe that we still have a great deal to offer to patients in the form of hope and excitement for what our efforts can bring in the future. If we’re willing to extend ourselves and share our honest experiences with patients, and to connect with them on an emotional level as much as we try to connect with them on a rational level, they may be more like to put their faith in us again.

So Much | So Fast

I now have to stop talking about poop GI matters for a while since Adam is going to give the impression that I have an obsession of some sort with the stuff.

Instead of spending time in the laboratory tonight (for which I’m feeling tremendously guilty), I ambled down to my favorite moviehouse, the Coolidge Corner Theatre, for their latest Science on Screen feature, the terrific So Much | So Fast. This is a remarkable documentary about Stephen Heywood, a man diagnosed with amyotrophic lateral sclerosis in December of 1998, and his family’s remarkable journey.

The film was notable on a number of levels. First, woven in and out of the story was the juxtaposition between Stephen Heywood’s physical deterioration, which one saw progressing over the course of the movie, and his infant son’s development. There were multiple scenes of Stephen at varying stages of the disease, entirely fixated on his child testing out new motor skills. As a physician, especially a pediatrician, it was really a privilege to see these images on the screen. I don’t think that I fully appreciated the profound loss suffered by Stephen Haywood, and by extension, any patient with ALS, until I was able to see it in the context of the motor development of a child. We take for granted the normal development and functioning of our nervous system. During residency I memorized the developmental milestones, their anticipated times of onset, the normal ranges, and the differential diagnoses for delays. But there is something very affecting about seeing it in parallel to the devolution of an individual, and even moreso when that individual is that child’s father. I could only imagine what was in Stephen Haywood’s mind as he watched his child gain the skills that he was now losing.

The movie was also remarkable for the other main theme: the mission undertaken by Stephen’s brother Jamie, to accelerate the search for a cure. Without getting into too much detail, Jamie Haywood built a research group over the course of the past 8 years, and in doing so chose to do so according to an entirely different set of principles than those typically followed by the scientific “establishment”. Where as the paradigm of scientific research in this country has been to let clinical discoveries bubble up from investigator-initiated basic science research, Jamie Haywood chose to attack the problem of ALS with a “top down” approach: apply as many drugs as possible to a mouse model of ALS and use whatever works on patients. As scientists we would call this “empiric therapy” – the application of treatment without understanding the underlying mechanism. There are many, many pitfalls to this approach if you look at it from the point-of-view of a scientist. However, there are probably just as many pitfalls to the conventional approach if you look at it from the point-of-view of a patient with a progressive, fatal disease.

After the film I had a chance to talk to Jamie Haywood for a little while. He was a little different from the way he appeared in the movie. Some of the desparation that came across in the movie has been replaced with what appeared to me to be a broader understanding of the size of the problem. That being said, I think that he is willing to call out science for its flaws and shortcomings (e.g., lack of adequate funding, duplicative research, inadequate publishing of ‘negative’ results, the propriatary nature of modern science vis a vis patents, competition for credit, grants and publication, corporatization of research, etc.). But more than just being a gadfly or naysayer, he has the energy and initiative to bring people from outside of science together to find creative approaches. One of the things that we spoke briefly about was a “Science 2.0” akin to the “Web 2.0″. In addition to the “regular” bottom-up science, why not capitalize of the remarkable technologic infrastructure that we have in place to draw important data out of what is going on out there.

For example, if you’re a pediatric patient with, say, acute lymphoblastic leukemia (ALL), depending on where you are you may get treated according to a Children’s Oncology Group protocol, a BFM (Berlin-Frankfurt-Munster) group protocol, at St. Jude’s protocol, or a Dana-Farber Cancer Institute/ALL Consortium protocol. You’ll get some cocktail of many of the same drugs, but on a different schedule, with different doses at different times. Which one is the best (in terms of outcome) with the fewest side effects? One way to find out would be to do a randomized trial with hundreds (or more) patients, dividing them between each of the four regimens. You’d need to have large enough groups to account for differences in patient populations, and you’d need to run the trials for a long time to figure out which had the best outcomes. You’d need to score all of the side effects for all of the patients in the same way. You’d need the cooperation of dozens, if not hundreds, of investigators. It’d be a long, expensive trial.

But what if you had a computer infrastructure in place for all patients on acute lymphoblastic leukemia therapy. A system that was open to the oncologists and the patients and their families. What if you put in all of the data. You’d enter the patient’s demographics, disease characteristics, treatment regimen, drug doses, schedule, the physician’s assessment of side effects, etc. On the patient side you’d have the patient or parent enter their assessment (timing, severity) of side effects. You’d collect other data: how many missed days of school, assessment of mood, appetite, mouth sores, hair loss, infections, missed doses of medication. Anything that you can think of, as long as you’d make it quantitative. As a result you’d have this large array of leukemia data, not dissimilar to the array data that you get from whole-genome cDNA arrays, or SNP arrays. The task then would be to mine the data. Much like gene chip data, you’d be able to mine it in innumerable ways. You’d find subsets of patients who, for example, got through their therapy without much nausea and vomiting. You could then go back and see how those patients did in terms of outcome. You could find out what cocktails of anti-nausea drugs they took and see if that was different than a group of patients with an average amount of nausea and vomiting, or those with the worst nausea and vomiting. Once we have the ability to quickly and cheaply run gene chips on patients and their disease you could correlate outcome or side effects with different patient or disease genotypes. Ultimately we could end up with a remarkable new “meta science” which would pool all disease data and genomic data, allowing sophisticated multi-dimensional views to replace the traditional two-dimensional Kaplan-Meyer curves (probability of survival versus time).

This seems awfully pie-in-the-sky, but in talking with Jamie Haywood, I was struck by the fact that he “gets it”. And while the part of me that is trained as a traditional scientist is skeptical when he takes on traditional clinical trials and peer-review, I appreciate the fact that he is trying to make us, as a community, take an honest look at the system by which we define scientific reality.

For more information about this movie, you can visit the film’s website here. There’s a preview of the movie available here. Jamie’s organization is the ALS Therapy Development Foundation. Their research page is well worth a look.

Tragically, Jamie’s brother Stephen died on November 27th in a tragic accident, in which is home ventilator became disconnected. The alarm was not heard and as a result he died from anoxia. Despite the fact that ALS is a progressive disease, patients can be maintained on a ventilator for many years. It was clear from the movie that Stephen’s life was cut short of what he wanted.

I would encourage anyone who reads this to try to see this movie, if not now, then when it becomes available on DVD. It is a remarkable and touching story of a man and his family. It is also a story about questioning the status quo. It is a story about the cost of pursuing a goal without limits. And ultimately, it is one man’s story about what is important in life.

[Nota bene: An excellent review from the New England Journal of Medicine can be found here.]