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Cancer, Pediatrics, Research, Stanford News

A cure is not enough for young cancer survivors

flower-887443_1920I survived Hodgkin’s lymphoma as a young adult about twenty years ago, thanks to the chemotherapy and radiotherapy that I received at Stanford Hospital as part of a clinical trial.

Even back then, the focus of the research was on fine-tuning my cancer treatment to maintain an excellent likelihood of survival, while minimizing the long-term health problems due to therapy. I knew Hodgkin’s was unlikely to kill me, so I had to worry instead about future health issues caused by my radiation and chemotherapy.

People that survive cancer at a young age are expected to live many decades after diagnosis and treatment, so they are the most vulnerable population to long-term damaging effects from cancer therapy. Stanford’s Karen Effinger, MD, MS, and Michael Link, MD, explore this issue in an editorial published today in JAMA Oncology.

The editorial explains that it is critical to directly study the late effects in young adult cancer survivors, rather than the common practice of extrapolating from studies of children and middle-aged adults.

In particular, they discuss a new study by Katherine Rugbjerg, PhD, and Jorgen Olsen, MD, DMSc, from the Danish Cancer Society Research Center, which used the national Danish registries to compare the long-term risk of hospitalization in almost 34,000 5-year survivors of adolescent and young adult cancers with that of more than 228,000 age- and sex-matched population controls. Reported in the latest issue of JAMA Oncology, Rugbjerg and Olsen found that adolescent and young adult cancer survivors had significant health issues due to their treatment; however, these treatment effects were different than survivors of childhood cancers.

The editorial also discusses the late effects of pediatric cancer treatment on survivors’ neurocognitive development, which impacts education, employment and quality of life. Effinger and Link specifically describe a new study reported in JAMA Oncology by Kevin Krull, PhD, and colleagues from the St. Jude Children’s Research Hospital, which compared the neurocognitive outcomes in 80 adult 25-year survivors of a pediatric cancer with 39 controls. Krull concluded that the risk of neurocognitive impairment from cancer treatment was related to the development of chronic health conditions — rather than directly from exposure to high-doses of chemotherapy, as expected — but longitudinal studies are needed to sort out possible modifying factors.

The editorial authors conclude:

Going forward, we must apply our knowledge of late effects to improve monitoring and interventions for patients. While the progress made in the management of cancer in children and young adults has been gratifying, we must remember the words of Giulio D’Angio, who reminds us that “cure is not enough.”

Jennifer Huber, PhD, is a science writer with extensive technical communications experience as an academic research scientist, freelance science journalist, and writing instructor.

Previously: Study highlights childhood cancer survivors’ increased risk of future health problems, Questioning whether physicians are equipped to care for childhood cancer survivors and A cancer survivor discusses the importance of considering fertility preservation prior to treatment
Photo by klimkin

Medical Education, Pediatrics, Stanford Medicine Unplugged

Empathy and the darker side of pediatrics

Empathy and the darker side of pediatrics

Stanford Medicine Unplugged (formerly SMS Unplugged) is a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week during the academic year; the entire blog series can be found in the Stanford Medicine Unplugged category.


I’m currently just over halfway through my pediatrics rotation, having recently finished up four weeks on inpatient peds and just started my month of outpatient peds.

Before this rotation, when I thought about pediatric medicine, I thought about diagnoses like asthma, croup, foreign body ingestions, and rashes. I never really thought about child abuse, or – as the medical terminology goes – “non-accidental trauma.” And yet, I saw all too much of it this past month on the wards.

Our 6 a.m. sign out one morning went something like, “Patient X, here for NAT, steadily improving, currently in CPS (Child Protective Services) custody, awaiting foster family placement.” When we met this young patient later that same morning, I found a strong mix of emotions stirring inside me: first disbelief, then overwhelming sadness, then – rapidly – anger.

How could ANY parent do this to their baby? This question repeated itself in my mind, over and over and over. I literally could not wrap my head around it. Here is this beautiful, helpless little human being – what could possibly make someone do harm to this child?

I was distressed and distracted throughout rounds that morning, until finally – unable to stay quiet – I confided my thoughts to one of the other members on the medical team, who said: “I know it feels hard to understand. But, take just a moment, and think about it from the parents’ perspective: They are no longer allowed to visit their own child. And they have to explain to literally everyone they know – friends, family, colleagues, other children in the home – why they no longer have their baby.”

Her words stunned me into momentary silence. Never had I thought to empathize with the parents of our NAT patient.

Somehow, I had taken that 2-minute sound bite uttered during morning sign-out and transformed it into a mental battlefield, with the health-care team on one side, fighting valiantly to protect this child, and the parents on the other, a medical story of “good” vs. “evil.” But my fellow team member was right: This situation was awful all around. These parents no longer had a child, the child no longer had parents, and sometimes – if the patient had siblings – the siblings too were taken into CPS custody.

This experience taught me how absolutely vital it is to find ways to empathize with every patient and every family, no matter what the circumstances. 

I feel like this is particularly relevant in the inpatient setting, where we see patients for days – which sometimes become weeks and months – at a time. We connect with our patients: They’re often the first people we see when we get into the hospital and the last ones we see when we leave. We feel like we know all about them, about their families, about their values. But we don’t.

We’re witnessing this small window of their lives that has brought them to the hospital. And as easy as it is sometimes to ask question and judge – particularly in the setting of something as sensitive as child abuse – it’s not our place to do so.

Hamsika Chandrasekar is a third-year student at Stanford’s medical school. She has an interest in medical education and pediatrics. 

Photo by 3rdparty

Ethics, In the News, Parenting, Patient Care, Pediatrics, Stanford News

Parents now help doctors decide what care is right for the sickest babies

Parents now help doctors decide what care is right for the sickest babies

Today, NPR’s Morning Edition featured an in-depth story on the evolution of decision-making in neonatal intensive care units – hospital nurseries for the sickest infants. Parents now have much more say in their babies’ care than in the past, and Stanford experts who were on the front lines of the change, including William Benitz, MD, chief of neonatology at Lucile Packard Children’s Hospital Stanford, explained how it happened.

As medical care for premature and other at-risk babies advanced in the 1970s and early 1980s, doctors gained the ability to save many infants who would once have died soon after birth. But some children in the new category of survivors had lifelong disabilities, with lasting implications for them and their families.

At first, doctors did not realize that this change would affect parents’ desire to participate in planning medical decisions for fragile infants:

“It never occurred to anyone that that might be a reasonable conversation to have,” Benitz says. “We were in unexplored territory.”

As technology improved and doctors tried to save sicker babies, and some born even earlier in gestation, there were new decisions to make: Should the health team put the tiny child on a ventilator? Attempt heart surgery? Those interventions helped many infants survive. Others did not fare as well.

“A lot of them ended up with significant impairments,” Benitz recalls. And doctors started to get pushback. “In the mid-80s we began to hear from families that maybe that wasn’t consistent with their goals for their children.”

As a result, neonatologists began having in-depth conversations with parents about the possible outcomes of different treatments for their infants. The practice is now widespread, and it means a lot to parents like Karin and Chris Belluomini, whose daughter, Joy, was born in May 2015 with Down syndrome, several heart defects and fluid around her lungs.

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Cancer, In the News, Pediatrics, Stanford News

“Earth angel” brings smiles to sick kids in hospital

"Earth angel" brings smiles to sick kids in hospital

6552156879_1cd906fbab_zHere’s a tale that will tug on your heart strings: It begins in a small town in Pennsylvania, in 1926, at the birth of Joe Manfrey, the fifth child in a family that would eventually grow to nine.

Like many his age, Manfrey served in World War II; his ship was part of the battle of Iwo Jima.

But unlike many of his peers, Manfrey, now 89, is still volunteering twice a week in the cancer unit in the Lucile Packard Children’s Hospital Stanford where he spreads good cheer, hope and sock monkeys. Manfrey was featured in a recent story in the San Jose Mercury News:

“Joe embodies the great values of the Greatest Generation,” said Leslie Griffith, a nurse in the Bass Center for Childhood Cancer and Blood Diseases. “He is funny, engaging and soothing to parents, who can be crying or overwhelmed by a surreal sadness. But just when they feel lost, someone kind and upbeat like Joe arrives — an Earth angel, a beautiful spirit.”

But there’s a twist to Manfrey’s story.

His own son, now 47, survived acute lymphoblastic leukemia as a child, at a time when its survival rates were much lower than they are now. He shows patients a photo of his son as a bald, 5-year-old, and then one as a healthy adult.

“By showing them the pictures together, it lets them know that I personally know what they are going through. It also gives them hope because they can see that Rob grew up to be healthy and strong,” Manfrey said in the article.

“This is not about me,” he emphasized in the story. “I do this for the kids and the parents, in order to take their minds off the difficulties they are going through. I try to make them feel a little more comfortable.”

Previously: California collaboration focuses on analyzing pediatric cancers, A look at the dramatic improvement in pediatric cancer survival rates and Children’s hospital volunteers snuggle infants to soothe tiny patients and reassure their parents
Photo by Clyde Robinson

Chronic Disease, Patient Care, Pediatrics, Stanford News

Helping kids with chronic medical conditions make the jump to adult care

Helping kids with chronic medical conditions make the jump to adult care

With just one dramatic example from her practice, Stanford pediatric critical care specialist Yana Vaks, MD, recently illustrated for me the importance of better adult health care for children who survive a catastrophic childhood illness or endure an incurable medical diagnosis.

“There was an 18-year-old who came to the hospital in crisis,” she said. “He had a liver transplant when he was 8, but when he turned 18 he wanted to start a new life and decided he was done with all that extra health consciousness his transplant meant.” The patient had stopped taking the drugs necessary to keep his body from rejecting the transplant and neglected to see his doctor regularly. By the time Vaks saw him, his transplanted liver had begun to fail, starting a catastrophic process that affects all body systems. “It was a shocking case,” she said. The teenager died the next day.

His mother told Vaks that the biggest challenge had been the 18th birthday, that legal coming of age where parents can no longer control what medications their children take.

As I did the reporting for a Stanford Medicine story called “When I Grow Up,” I was shocked to learn just how many young adults fall into the categories of survivor or chronically ill: They may soon represent 10 percent of the U.S. population ages 15 to 25. Before advances in treatment began saving so many lives, that population was just 1 percent.

The specialists who treat these growing children have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.

What’s needed is something called transition care — but no one had studied just what that should look like. The Clinical Excellence Research Center, established in 2010 to study, design and demonstrate ways to improve health care while reducing costs, identified transition care as a good candidate for the changes it hopes to effect with its work. For two years, CERC gathered information, reviewed research, interviewed patients and families and visited hospitals around the country, and it has launched pilot programs – including one at Stanford Children’s Health – to test its recommendations:

The CERC team’s recommendations emphasize that pediatricians and pediatric specialty teams must be guides in this process: equipping patients and parents with information so they can anticipate the transition, coaching patients to develop the confidence and skills needed to manage their health, and locating and being available to specialists and primary care physicians who will need certain medical knowledge to care for their patients as adults.

Previously: Stanford Medicine magazine tells why a healthy childhood mattersStudy highlights childhood cancer survivors’ increased risk of future health problemsQuestioning whether physicians are equipped to care for childhood cancer survivors and Chronic illness in childhood: One patient’s story
Illustration by Daniel Horowitz

Cancer, Pediatrics, Research, Stanford News

A family’s story changes the science of a rare tumor

A family's story changes the science of a rare tumor

Super-DylanWhen Danah Jewett’s 5-year-old son, Dylan, was dying from a brain tumor in 2008, she wanted to know if there was anything her family could do to help other children who might someday face the same terrible diagnosis. Yes, said Dylan’s doctor, Michelle Monje, MD, PhD: Would you be willing to donate his tumor for cancer research after his death?

Danah and Dylan’s dad, John, didn’t hesitate. If it will help, they said, we’ll do it.

Monje explained that scientists needed a way to study Dylan’s rare tumor, diffuse intrinsic pontine glioma, in the lab. The tumor grows tangled into a part of the brain stem that is risky to biopsy in living patients, and decades of chemotherapy trials had not budged the disease’s five-year fatality rate of 99 percent. But having DIPG tumor cells in a dish would open a new world of research options for understanding the biology of the tumor and – Monje hoped – developing new treatments.

After Dylan’s death in early 2009, Monje’s team succeeded in transforming his tumor cells into the world’s first DIPG tissue culture. A few months later, I wrote a feature story for Stanford Medicine magazine about the Jewetts’ donation and its impact. In the intervening years, as I’ve continued to report on Monje’s DIPG research, she has also kept me abreast of the effect of Dylan’s story. It’s pretty remarkable: So far, 21 other families have donated DIPG tissue from their deceased children, many after reading the Stanford Medicine story. And DIPG families have also raised more than $1 million to help fund Monje’s work. Their generosity is enabling new understanding of how the tumor functions, and has helped Monje’s team identify an existing drug that slows DIPG in mice.

I recently interviewed Danah for a short follow-up piece for Stanford Medicine about the impact of Dylan’s story. I asked her to reflect on why she felt able to share the story, given that many families wouldn’t want to open a window for the world into such a heartbreaking part of their lives.

“It’s a hard one,” Danah told me. “I do know a lot of families stay private, but it didn’t dawn on me at the time. I knew then that I just didn’t want to let his memory die. By sharing the story, it helped Dylan to be living on – in my heart and other people’s.”

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Behavioral Science, Mental Health, Pediatrics, Stanford News

Beyond behavior: Stanford expert on recognizing and helping traumatized kids

Beyond behavior: Stanford expert on recognizing and helping traumatized kids

beyond_behavior_fullWhen Victor Carrion, MD, was a pediatric psychiatry fellow in the mid-1990s, he had an “a-ha” moment about some of his poorly behaved patients that set the trajectory of his career. These kids had been traumatized, and the adults around them didn’t recognize it.

He described what happened for my feature story in Stanford Medicine magazine:

“Kids were coming to see me with little notes from their teachers that said, ‘This child has ADHD. Please place on Ritalin,’” Carrion says. Chuckling slightly, he recalls his half-facetious reaction to these missives: “Wow: A diagnosis has been made; there’s a treatment plan; there’s not much for me to do here.”

But after carefully obtaining life histories for several patients, he realized that although some had ADHD, many others had been traumatized by such experiences as abuse, neglect or witnessing violence in their homes or communities. Their reactions — a triad of self-protective behaviors that experts summarize as “freeze, fight or flee” — were being misinterpreted as ADHD’s signature inattentiveness, hyperactivity, aggression and poor cooperation.

Childhood trauma, Carrion realized, was very poorly understood. People assumed kids were more resilient in the face of trauma than adults (they’re not), that you could deal with trauma by ignoring it (no) or that children traumatized before they had the vocabulary to describe what was going on would simply forget what had happened (no again). He wanted to understand what was really going on.

Now, 20 years later, his work and that of many other trauma experts across the country clearly shows we can’t afford to ignore the long shadow cast by early-life abuse, neglect, violence and other instability. “We need to address trauma because it impacts health, period,” Carrion told me. “Not just mental health; it impacts physical health as well.”

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Evolution, Infectious Disease, Microbiology, Pediatrics, Pregnancy, Research, Stanford News

Mastermind or freeloader? Viral proteins in early human embryos leave researchers puzzled

Mastermind or freeloader? Viral proteins in early human embryos leave researchers puzzled

and_virus_makes_four_fullI’m filing this finding firmly under the category of “Things I’m glad I didn’t know when I was pregnant.” (Other items include the abject terror of letting your teen get behind the steering wheel of a car for the first time, and the jaw-dropping number of zeros that can appear in a college financial aid package.) Recently, Stanford researchers found that the earliest stages of human development – those that occur within days of fertilization – may take place in a stew of viral proteins that lie in wait tucked inside the human genome. What do the viral proteins do? Who knows! Why are they popping up when we’re (arguably) at our most vulnerable? No idea!

Ugh. Like there’s not enough to worry about while growing another human inside your body.

I’m not being entirely fair here. Developmental biologist Joanna Wysocka, PhD, and graduate student Edward Grow, were some of the first researchers to show that ancient viral DNA sequences abandoned in our genome after long-ago infections can and do make viral proteins early in human development. I wrote about their finding on this blog earlier this year.

My article in the most recent issue of Stanford Medicine magazine expands on this story, describing how they made their finding and their future plans to learn more about our viral co-pilots. As I explain:

The finding raises questions as to who, or what, is really pulling the strings during human embryogenesis. Grow and Wysocka have found that these viral proteins are well-placed to manipulate some of the earliest steps in our development by affecting gene expression and even possibly protecting the embryo’s cells from further viral infection.

I’m often struck by how much parenting is like research. It’s a (seemingly) never-ending, but very rewarding, job. And for both, there’s clearly always lots to learn. As I write:

So, who’s in charge here? Us or the viruses? Or is there no longer any distinction? There’s certainly been plenty of evidence showing that humans are far from free operators when it comes to, well, pretty much anything. Our bodies are teeming masses of bacteria, viruses and even fungi that are collectively known as the microbiome. Many of these microorganisms, which are 10 times more numerous than our own cells, are essential to a healthy life, such as the gut bacteria that help us digest our food.

“What we’re learning now is that our ‘junk DNA,’ including some viral genes, is recycled for development in the first few days and weeks of life,” says [study co-author and former Stanford stem cell researcher Renee Reijo-Pera], who is now on the faculty of Montana State University. “The question is, what is it doing there?”

Previously: Stanford Medicine magazine tells why a healthy childhood mattersMy baby, my…virus? Stanford researchers find viral proteins in human embryonic cells and Species-specific differences among placentas due to long-ago viral infection, say Stanford researchers
Photo of Joanna Wysocka by Misha Gravenor

Nutrition, Parenting, Pediatrics

Forget perfection and just cook for your kids, says new book by Stanford author

Forget perfection and just cook for your kids, says new book by Stanford author

Maya Adam at farmers market“Our children are in trouble because we’ve outsourced the job of feeding them,” says Stanford child nutrition expert Maya Adam, MD.

To tackle the problem, Adam is spreading a refreshing message: Forget celebrity-chef culture and food fads, and just cook for your kids. Eat real food and enjoy it. Don’t worry about perfection. Help your children learn to love healthy foods that will love them back.

Over the last few years, as the instructor of a wildly popular online nutrition and cooking course and through the nonprofit she founded, Adam has shared her common-sense approach with thousands of people. Now she has a book, Food Love Family: A Practical Guide to Child Nutrition, which builds on those messages with stories about how parents around the world find a healthy approach to feeding their kids.

“My goal was to translate scientific research on nutrition and children’s health, and make it something parents could turn into practical success,” Adam told me when I called to chat about her new book. An edited version of our conversation is below.

Your book suggests we focus more on whole foods and less on individual nutrients. Why is that important for parents to hear?

Traditionally, nutrition science is reductionist – it has focused on individual nutrients because that’s how scientists study them. But it doesn’t necessarily translate to action for parents, because we eat food, not nutrients. The book is about making that link, translating science into helpful strategies parents could implement with their families.

In childhood, we have this unique opportunity to create a situation where the foods kids enjoy most are the foods that will support them throughout their lives. If we can do that, then we’ve won: We never have to re-train them later when they’re pre-diabetic or struggling with their weight and say, “You’re no longer allowed to eat the foods you’ve grown to love.” Instead, their whole lives they love the right things.

You’ve written about the fact that our culture has built cooking up into an extreme sport, not to be attempted by amateurs — and that scares people off. If you heard from a parent who said, “OK, you’ve convinced me to overcome my fear of cooking, but I need an easy place to start,” what would you tell them?

At the end of the book, we’ve included very simple recipes, all of which tie back to our free online course with videos that show the recipes in action. It’s part of a system of support for parents. If they’re visual learners and want to see someone doing it – how to crack an egg while holding a young child on your hip, for instance – we have that.

Cooking for your family is not about being perfect; it’s about being real, about doing just a little more than you’re doing now. We all have to do the best we can with the resources that are available. Maybe we can’t always afford the grass-fed beef, for instance, but that’s OK. We do what we can with the time, skills and financial resources we have.

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Global Health, Pediatrics, Public Health, Rural Health, Stanford News

Helping newborns through song

Helping newborns through song

Instead of drugs or fancy devices, a small village in India is using dhollak and dafali — drums traditional to the region — to spread awareness about post-natal care and to battle infant mortality. As Becky Bach explains in the latest issue of Stanford Medicine magazine, the effort started as part of a public-health research project led by researchers Gary Darmstadt, MD, and Vishwajeet Kumar, MBBS, who partnered with community leaders in an effort to communicate evidence-based health practices:

In a groundbreaking endeavor, [Darmstadt’s] team worked with communities to slash newborn mortality by 54 percent in less than two years in a large, impoverished area in northern India called Shivgarh.

Their strategy was simple, in principle: embrace the local culture, seek to understand its newborn-care practices, and partner with the community to translate evidence-based recommendations into meaningful communications — metaphors, songs — that could change behavior.

“Songs have traditionally played a key role in the community as a medium for transferring cultural knowledge inter-generationally and within groups,”  Vishwajeet Kumar, director of the Community Empowerment Lab in Shivgarh, told me. In the above video, a group of women, some holding infants, sing about the importance of skin-to-skin care:

Pregnant women and mothers-in-law, who play a critical role in perpetuating the community’s childbirth traditions, were shown how to provide skin-to-skin care, a simple practice that involves placing the bare-skinned baby on the caregiver’s skin, providing love, warmth and access to nourishment. The practice produces immediate, tangible benefits: It improves babies’ color and temperature, and reduces crying and startle responses. The villagers interpreted these signs as the absence of evil spirits, reinforcing their willingness to embrace the change.

A talented local songwriter named Santosh Kumar is responsible for many of these songs, which combine global knowledge with local wisdom, said Vishwajeet Kumar. He works in collaboration with the community to organize gatherings where important early care practices, from sanitation to breastfeeding, are conveyed through his songs.

The story of Shivgarh is a reminder that sometimes health is about more than doctors and big facilities. Sometimes the final puzzle piece can take the form of knowledge and a dedicated community.

Lindzi Wessel is a former neuroscience researcher and current student in the UC Santa Cruz Science Communication Program. She is an intern in the medical school’s Office of Communication and Public Affairs.

Previously: Stanford Medicine magazine tells why a healthy childhood matters and Countdown to Childx: Global health expert Gary Darmstadt on improving newborn survival

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