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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

Cancer, Genetics, Pediatrics, Research

California collaboration focuses on analyzing pediatric cancers

California collaboration focuses on analyzing pediatric cancers

Breakthroughs in medical research can take a frustratingly long time to reach doctors and the patients they treat. But a newly funded collaboration between computational biologists at UC Santa Cruz and researchers conducting pediatric cancer clinical trials at three California institutions, including one led by Stanford’s Alejandro Sweet-Cordero, MD, may set the stage to bring the power of cancer genomic research into the hands of clinicians and their patients.

The California Initiative to Advance Precision Medicine is funding the UC Santa Cruz Genomics Institute’s California Kids Cancer Comparison project. The project will develop technology to use a cancer’s genetic mutations, its DNA signature, to match it to similar cancers regardless of the tissues the cancers originated from. So, if a lung cancer’s DNA signature more closely resembles a certain kind of brain cancer’s signature, then doctors may pursue treatments that have proven effective against that brain cancer. This technique is especially beneficial for pediatric cancers, which are rarer than adult cancers and less likely to have been included in clinical drug trials.

The project builds on the UC Santa Cruz Genomic Institute’s Treehouse Childhood Cancer Project, led by bioinformatics researcher and UCSC postdoctoral scholar Olena Morozova, PhD, which showed how the academic investigations could have real world consequences.

“Treehouse was started as a research project – we weren’t thinking we could go clinical with it,” Morozova told me. That changed when she and colleagues analyzed the genes of an aggressive sarcoma from an 8-year-old boy enrolled in a cancer genomic clinical trial six months ago.

The child’s cancer had originated in his brain and had gone into remission after a standard treatment of chemotherapy, radiation and a bone marrow transplant. But two years later doctors found tumor growths in his lungs.

Morozova and her colleagues found that genes turned on in the boy’s cancer cells matched those turned on in a rare neuron tumor called a neuroblastoma that is found almost exclusively in children.

Neuroblastomas happened to be the cancer Morozova researched for her PhD, and she knew of a molecular signaling pathway that could be active in the boy’s cancer. Two drugs that target this pathway had been shown to be effective in clinical trials and had received Food and Drug Administration approval for adult patients. The UCSC researcher’s passed on their data supporting that the pathway was active in the tumor to the boy’s physician, who chose to administrate the drugs.

By partnering with researchers like Sweet-Cordero, who’s conducting a trial on difficult-to-treat cancers in children and young adults, the California Kids Cancer Comparison project will be able to compare the cancer DNA sequences to a collected database of both adult and pediatric cancers. And they hope to automate parts of the analysis to make this technology accessible to doctors without degrees in bioinformatics.

“If it is successful, we hope to offer it to every child with cancer in California and elsewhere,” said Morozova.

Kim Smuga-Otto is a student in UC Santa Cruz’s science communication program and a former writing intern in the medical school’s Office of Communication and Public Affairs. 

Previously: Gene-sequencing rare tumors – and what it means for cancer research and treatment

Chronic Disease, Imaging, Pediatrics, Research, Stanford News

Why chronic disease harms kids’ bone development — and what to do about it

Why chronic disease harms kids' bone development — and what to do about it

osteoporosis“Someone once told me listening to me talk is like drinking from a fire hose,” Mary Leonard, MD, said to me at the end of our recent 45-minute interview. I had precisely the opposite reaction: After I left her office at Stanford Hospital, I was so parched from our conversation I walked across the street, bought a bottle of water and downed the whole thing.

Leonard, a professor of pediatrics and of medicine, has a sense of urgency for a reason: She’s trying to make sure children with chronic diseases build as much bone as possible before puberty ends. Once that window closes, she and other researchers believe, it’s too late to do much about it. And the likely consequence of emerging from adolescence with inadequate bone mass is early osteoporosis.

“Kids with kidney disease are, even as children, fracturing more than you would expect,” Leonard said. “Kids with arthritis are fracturing more than you would expect.” Ditto those with congenital heart disease, organ or bone marrow transplants, inflammatory bowel disease, cerebral palsy, muscular dystrophy or a history of cancer. The culprits: inflammation, immobility, malnutrition, stunted growth, steroid treatment or a combination thereof.

Leonard’s work fits in perfectly with the most recent issue of Stanford Medicine, which is all about how early experiences can have far-reaching consequences for our health. As she says in my story about her research program:

We believe that once you go through puberty, you’re not getting that bone back. I feel like we’ve described and described the problem, and now we need to do clinical trials to see what we can do to improve bone health in these patients. We just want to make sure they go into adulthood with the best, strongest skeleton possible — with bones to last a lifetime.

Leonard has several ideas about what would help — exercise interventions, medications, more aggressive treatment of the underlying condition at younger ages — and state-of-the-art imaging equipment with which to assess them. “We’re on the cusp,” she told me with excitement, “of transitioning from describing and describing to actually doing something.”

Previously: Stanford Medicine magazine tells why a healthy childhood matters, Pediatric nephrologist Mary Leonard discusses bone health in children with chronic diseases at Childx and Pediatrics group issues new recommendations for building strong bones in kids
Photo by Sebastian Kaulitzki/Shutterstock

Pediatrics, Podcasts, Public Safety, Women's Health

Jimmy Carter: The final campaign

Jimmy Carter:  The final campaign

People Jimmy CarterShortly after leaving the White House in 1980, Jimmy and Rosalynn established the Carter Center. It is from there that their efforts at “waging peace, fighting disease and building hope” – the center’s mission – have been launched.

Along with his global travels to advance democracies around the world, his projects in global health, and his time building for Habitat for Humanity, Jimmy Carter is also a prolific writer. He’s written twenty-eight books. One of his most recent – A Call to Action, Women, Religion, Violence, and Powerdetails the discrimination that women and girls face worldwide. Widely recognized for his Christian beliefs and noted as a Sunday school teacher for more than 70 years – Carter challenges those who use religious texts to deny women equality. In a Call to Action, he writes, “Women and girls have been discriminated against too long in a twisted interpretation of the word of God.”

For the latest Stanford Medicine, a special on issue on pediatric research and care, I spoke with Carter about girls and women’s equality – an issue that he said would receive his highest priority in his final years. But this summer brought disturbing health news, and a different priority has entered his life: treating metastatic cancer that has spread to his brain.

I worked in the Carter White House. Like many others who served there, I wasn’t prepared for this news – we viewed Jimmy Carter to be indestructible. Even the word “cancer” in regards to Carter seems oxymoronic when you know firsthand his indomitable spirit and boundless energy.

I spoke with him for this 1:2:1 podcast and Q&A before his diagnosis. Later in the summer, I followed up with an email wishing him well and a speedy recovery, and he responded: “Thanks, Paul. I am at ease, and grateful. Jimmy”

And then late last month, just two days before Carter’s 91st birthday, Habitat for Humanity announced that his medical team approved his traveling to Nepal in November to build a home there. (Note from editor: Habitat for Humanity has cancelled the trip due to safety concerns.) Talk about an indomitable spirit and boundless energy.

Previously: Stanford Medicine magazine tells why a healthy childhood matters and Lobbying Congress on bill to stop violence against women
Illustration by Gérard DuBois

Cardiovascular Medicine, Pediatrics, Pregnancy, Research

Higher blood sugar in pregnancy tied to heart defects in baby, even if mom isn’t diabetic

Higher blood sugar in pregnancy tied to heart defects in baby, even if mom isn't diabetic

five-heartsFor many years, doctors have known that women who had diabetes during pregnancy faced an increased risk of giving birth to a baby with a congenital heart defect. But now, for the first time, researchers have shown that the risk isn’t limited to women with diabetes. A new Stanford study, publishing today in JAMA Pediatrics, found that women who were carrying a fetus with tetralogy of Fallot, the most common cause of blue baby syndrome, had higher blood sugar levels on average than women carrying healthy fetuses, even if the mothers were not diabetic.

From our press release about the research:

“Diabetes is the tail end of a spectrum of metabolic abnormalities,” said James Priest, MD, the study’s lead author and a postdoctoral scholar in pediatric cardiology. “We already knew that women with diabetes are at significantly increased risk for having children with congenital heart disease. What we now know, thanks to this new research, is that women who have elevated glucose values during pregnancy that don’t meet our diagnostic criteria for diabetes also face an increased risk.”

The Children’s Heart Center at Lucile Packard Children’s Hospital Stanford (where Priest, who is also a pediatric cardiology fellow, sees patients) is already a world leader in treating children born with tetralogy of Fallot. Pediatric cardiothoracic surgeon Frank Hanley, MD, has developed a surgical technique called unifocalization that allows him to repair the defect in a single, long operation – which is safer than the alternative of putting babies and children through several open-heart surgeries. Many families come long distances so their children can receive the lifesaving surgery.

Although the Heart Center team is glad to be able to offer state-of-the-art treatment for kids who already have heart defects, they would be even happier to know how to prevent such defects from happening in the first place. Genetics plays into some heart defects, but in most cases, the cause is a mystery.

So this new study, though relatively small with 277 subjects, gives a clue that the Stanford team is eager to follow with other investigations:

“I’m excited by this research because it opens up a lot of questions about how physiologic processes in the mother may be related to congenital heart disease,” Priest said. “Most of the time we don’t have any idea what causes a baby’s heart defect. I aim to change that.”

The study’s senior author, Gary Shaw, DrPH, professor of pediatrics in neonatal and developmental medicine, added, “There are several other kinds of structural birth defects, in addition to heart defects, that have been linked with overt diabetes. This new work will motivate us to ask if underlying associations with moderately increased glucose levels may be similarly implicated in risks of some of these other birth defects.”

I also chatted with pediatric cardiologist and Heart Center director Stephen Roth, MD, who pointed out a practical advantage of the new finding that hadn’t occurred to me: We already know how to address elevated blood sugar with strategies such as dietary change, exercise and medications. If today’s discovery is replicated in larger studies, it wouldn’t be hard to translate it into action.

“It’s always wonderful to discover new information about the cause of a disease or class of diseases,” Roth told me. “And it’s particularly encouraging when we have the possibility of modifying the cause with existing therapies to reduce the likelihood that the disease occurs.”

Previously: Patient is “living to live instead of living to survive” thanks to heart repair surgery, Little hearts, big tools and When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn
Photo by emdot

Global Health, Pediatrics, Stanford News

Stanford Medicine magazine tells why a healthy childhood matters

Stanford Medicine magazine tells why a healthy childhood matters

cover 560 450
I’ve forgotten most of my childhood experiences – which is perfectly normal. But apparently my body remembers many of those experiences – and I learned while editing the new Stanford Medicine magazine that’s normal too. The fall issue’s special report, “Childhood: The road ahead,” is full of stories of researchers realizing the impact early experiences can have on adult health. Some of their discoveries are surprising.

“Some people think kids are protected by virtue of being kids. In fact, the opposite is true,” pediatric psychiatrist Victor Carrion, MD, told writer Erin Digitale, PhD, when she interviewed him for her story on the long-term effects of childhood trauma. Other writers found the same goes for other types of early damage: Kids are resilient but they also carry hidden scars.

The report also includes a Q&A with former President Jimmy Carter on discrimination against women and girls, which he considers the most serious human rights problem on Earth. The online version of the magazine includes audio of the Carter conversation.

Other highlights of the magazine’s special report include:

  • Go to bed“: An article on the devastating toll inadequate sleep takes on teens, with an update on efforts, including a Stanford project, to fix the problem.
  • When I grow up“: A report on the growing need for support of chronically ill children making the jump to adult care, and on the progress that’s being made.
  • Beyond behavior“: A story about a high school student’s return to health after an assault, and the new type of therapy that helped her.
  • Rocket men“: A feature about three rocket-combustion experts teaming up with a pediatrician to analyze the breath of critically ill children at warp speed.
  • Warm welcomes“: An article on blending Western medicine into traditional culture to reduce newborn mortality in the developing world.
  • Bad for the bone“: A quick look at a new way to study the toll of childhood disease on bones.

The issue also has an article on a surprising role for viruses in human embryos, as well as a report from India on how vision, investment and medical know-how has brought about an ambulance system — now 10 years old and one of the most important advances in global health today. The online version includes a video showing the ambulance system in action.

Many thanks to Lucile Packard Children’s Hospital Stanford, which helped support this issue.

Previously: This summer’s Stanford Medicine magazine shows some skin, Stanford Medicine magazine reports on time’s intersection with health and Stanford Medicine magazine traverses the immune system
Illustration from the cover of Stanford Medicine magazine’s fall 2015 issue by Christopher Silas Neal

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