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Leaving “No Stone Unturned” for Children with High-Risk Leukemia

Henry Lawrence (left) with nurse coordinator, Shauna Sinclair. Henry received care for aggressive acute myeloid leukemia as part of Seattle Children’s High-Risk Leukemia Program.

There are two fateful phone calls Robin Lawrence will always remember.

The first, an unexpected late-night call from her son’s pediatrician. He had just reviewed the results from his recent blood work, and something was off. The doctor instructed Robin to immediately take then 13-month-old Henry to the nearest children’s hospital to get it checked out. He said that they had to consider it could be cancer.

She remembered thinking in the moment, “That’s ridiculous. Of course, he doesn’t have cancer.”

Days later, Henry was diagnosed with acute myeloid leukemia (AML), an aggressive childhood cancer.

The second call occurred not long after Henry’s leukemia returned for a third time. At the time, Henry was in between treatments. Another round of chemotherapy had temporarily put the cancer into remission, but the Lawrences knew the statistics were not in their favor. The likelihood the leukemia would come back was high.

Their conversation was the first of many with Dr. Todd Cooper, co-interim division chief of Seattle Children’s Cancer and Blood Disorders Center and director of Seattle Children’s High-Risk Leukemia Program, as part of a second opinion service the program offers.

By the end of the call, Robin and her husband, David, knew Seattle Children’s was the best place for Henry should the cancer ever come back. In the coming weeks, they decided to move from their home in Southern California to Seattle for Henry’s medical care.

“When we talked to Dr. Cooper, it was very clear to us that Seattle Children’s is on the forefront of cutting-edge research and treatments for pediatric high-risk leukemia,” Robin said. “Our son’s cancer was in remission, but we understood that it was very likely to recur. We wanted to be in Seattle, ready to get whatever the best care for Henry would be when that time came.” Read full post »

Light and Genetic Probes Untangle Dynamics of Blood Flow Through the Brain’s Vast Capillary Network

The human brain has over 400 miles of total vasculature, yet little is known about the tiny capillaries that make up much of this intricate labyrinth. Understanding how this vast network regulates blood flow in the brain could hold the key to new treatments for neonatal and childhood neurologic conditions, such as stroke and hypoxia, and issues of aging like dementia and Alzheimer’s disease.

While the human brain has over 400 miles of total vasculature, little is known about the tiny capillaries that make up much of this intricate labyrinth of blood vessels critical for delivering oxygenated blood and nutrients to billions of brain cells.

According to Dr. Andy Shih, a principal investigator in the Center for Developmental Biology and Regenerative Medicine at Seattle Children’s Research Institute, understanding how this vast network regulates blood flow in the brain could hold the key to new treatments for neonatal and childhood neurologic conditions, such as stroke and hypoxia, and issues of aging like dementia and Alzheimer’s disease.

“Insufficient blood flow contributes to many of the common neurologic problems seen in children and adults,” he said. “Yet, because we can’t see the capillaries, which measure about 1/10th the thickness of hair, with in vivo clinical imaging techniques, determining how blood travels through this densely packed bed of vessels has remained elusive.”

Wanting to get a closer look, Shih and fellow scientists, Dr. Andree-Anne Berthiaume and Dr. David Hartmann, applied special techniques called two-photon imaging and optogenetics to isolate and study brain capillaries in animal models. Their findings published today in Nature Neuroscience describe the dynamics that govern capillary blood flow in the brain and have broad implications for future avenues of brain research.
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Liquid Biopsy Promising in Children With Vascular Malformations

Ezra Anpo (right), here with his sister Aria, participated in a research study investigating a liquid biopsy approach to providing a genetic diagnosis in children with lymphatic malformations.

Doctors at Seattle Children’s are investigating whether a simple liquid biopsy containing a small amount of fluid from a patient may someday provide an easier route to a genetic diagnosis in children with vascular or lymphatic malformations.

The work is a collaborative effort led by Dr. James Bennett, a clinical geneticist and co-director of the molecular diagnostic laboratory at Seattle Children’s and Dr. Jonathan Perkins, an otolaryngologist and director of the Seattle Children’s Vascular Anomalies Program. Liquid biopsy offers an alternative to the more invasive surgical biopsies required – when a genetic, or molecular diagnosis, is needed to help guide a patient’s treatment.

“We can now provide a specific genetic diagnosis for a lot of vascular malformations,” Bennett said. “That’s important for families for a variety of reasons with one being it’s just extremely healing and powerful to know the reason why your child has these differences.” Read full post »

Study Offers Good News on COVID-19 Immunity

Pictured from left to right: Yu Chen, Malika Hale and Christopher Thouvenel of the Rawlings lab at Seattle Children’s Research Institute.

For close to a decade the labs of Dr. David Rawlings at Seattle Children’s Research Institute and Dr. Marion Pepper at the University of Washington have collaborated on a project studying the immune response in malaria infections.

As the COVID-19 pandemic gripped the U.S., they turned their expertise and the techniques pioneered for malaria to a new line of inquiry: Did mild infection from the new coronavirus stimulate the immune system to generate antibodies that would offer future protection from the virus? And if so, could they engineer those neutralizing antibodies in the lab to develop potent new therapeutic options?

Rawlings, the director of the Center for Immunity and Immunotherapies at Seattle Children’s and a professor of pediatrics at UW, discusses their encouraging findings now published in Cell. Learn why he says their research is good news for efforts to control COVID-19 and what’s next for his lab. Read full post »

Minimally-Invasive Imaging and Laser Surgery Solve Elusive Epilepsy

Giorgia Graham, 11, is among the 20 to 30% of children with epilepsy whose seizures do not respond to medication. Surgery is an option if doctors can pinpoint the source of the seizures and remove the abnormal tissue without affecting the child’s ability to process information, see, speak or move.

When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.

But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.

“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »

Out of Heartache, Hope Surfaces for Colton’s Metabolic Disorder

Colton Iverson holds a photo of his older sister, Cody. Photo courtesy Copper Ridge Photography.

Before his first breath, Colton Iverson had already received the gift of a lifetime. Just days old, he became the youngest patient to go on a drug recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of a life-threatening genetic condition called very long-chain acyl-CoA dehydrogenase, or VLCAD, deficiency.

For his parents, the hope it inspired did not come without heartache.

“Colton wouldn’t be here today without our first born, his older sister Cody,” said his mom, Lisa Iverson.

A few days after coming home as excited new parents of a healthy baby girl with an Apgar score of 10, Cody went lifeless in Lisa’s arms one morning. She and her husband, Ty Iverson, rushed Cody to their local hospital in northeastern Washington.

“They did everything they could to save her and they couldn’t,” Lisa said. “For about week, we had no idea what happened to Cody.”

On the day of Cody’s service, the Iversons heard from their family medicine doctor, Dr. Geoffry Jones.

“As we were driving home, I remember the exact spot on the road when we got the call from Dr. Jones,” Lisa said. “He said her newborn blood test showed she had a genetic condition called VLCAD. He recommended we get in touch with a specialist at Seattle Children’s to learn more.” Read full post »

Scientist Develops New Way to Test for COVID-19 Antibodies

A newly developed cell-free test can rapidly detect COVID-19 neutralizing antibodies and could aid in vaccine testing and drug discovery efforts.

When Dr. Stephen Smith of Seattle Children’s Research Institute came down with muscle aches, gastrointestinal distress and a sudden loss of smell in late February, he suspected he had COVID-19. The testing criteria had yet to be expanded to include individuals with Smith’s symptoms and so he did what many scientists with his expertise would do: he developed a way to test himself.

The fruits of his curiosity, now published in the The Journal of Infectious Diseases, offer a reliable way to quantify whether an individual has neutralizing antibodies that could prevent the novel coronavirus from infecting cells using a method that is more broadly applicable than those currently available.

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“It’s Been Hard, But There’s Hope”: Family Joins Experts to Shed Light on AFM

Maxford Brown, 16, with his family at Seattle Children’s. Maxford was diagnosed with acute flaccid myelitis, or AFM, in 2017. Pictured from left to right: (front) Maxford and his younger brother, Zachary; (back) Maxford’s dad, Jeff; mom, Tracy; and older sister, Grace.

It’s been over three years since Maxford Brown woke up one morning not feeling well. Neither Maxford nor his family had any idea that it would mark the beginning of a life-changing journey with a rare, but serious neurological condition called acute flaccid myelitis, or AFM.

“I suggested it might help for him to lay down. When I went to wake him up, he had lost all ability to move on his own,” remembered his mom.

In a state of shock, Tracy Brown called their pediatrician to describe what had happened to her son.

“I remember asking our doctor if we should make an appointment,” she said. “That’s when they told me we needed to get Maxford to Seattle Children’s Emergency Department right away.” Read full post »

Making Sense of Restless Sleep Disorder in Children

Emily Caveness, 9, had always been a very active sleeper. When her lack of restful sleep started disrupting her social and school life, her parents sought the help of sleep medicine experts at Seattle Children’s where they first learned of restless sleep disorder in children.

An international panel of sleep experts is adding a new pediatric sleep disorder they call restless sleep disorder, or RSD, to parents’ and pediatricians’ radars.

Led by Seattle Children’s pediatric sleep specialist, Dr. Lourdes DelRosso, the group shares their consensus on a medical definition of RSD in a new paper published in Sleep Medicine. Known to occur in children 6-18 years old, RSD can lead to attention impairment, mood and behavioral problems and other issues at home and school due to poor sleep quality.

“For many years, those of us in sleep medicine have recognized a pattern of sleep that affected a child’s behavior but didn’t fit the criteria for other known sleep disorders or conditions linked to restless sleep like obstructive apnea or restless legs syndrome,” DelRosso said. “This work provides consensus on a definition and diagnostic criteria for RSD, offering a new tool to help more children suffering from restless sleep.” Read full post »

Reaching New Heights: Champion for Pediatric Research Reflects on National Role

Recently appointed to the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema is a passionate champion for the patients and families who participate in research studies. Here, Diekema is photographed enjoying another passion: hiking and mountaineering.

As a newly appointed member of the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema has always had a passion for interpreting and applying the regulatory laws for research involving human subjects to support the children and families that participate in research at Seattle Children’s.

Although he just assumed his role on the national committee that guides medical research activity across the U.S. this July, Diekema is no stranger to research oversight: he has served as the chair of Seattle Children’s Institutional Review Board (IRB) for the last two decades. In his time as chair, he’s witnessed Seattle Children’s Research Institute grow from a fledgling initiative into the burgeoning enterprise it is today, overseeing hundreds of research studies across nearly every pediatric specialty.

Here, Diekema reflects on what he’s most looking forward to as a member of SACHRP and why it’s very likely you’ve never heard of an IRB before. Read full post »