On the Pulse

Cancer Survivors Conquer the Runway with Russell Wilson for a Powerful Cause

Russell Wilson walked the runway with three young cancer survivors for a special fashion show benefiting Seattle Children’s Strong Against Cancer.

Last week, the MoPOP in Seattle became a glamorous gateway to fashion and fun that benefitted Seattle Children’s Strong Against Cancer, a national philanthropic initiative with worldwide implications for potentially curing childhood cancers without the harmful affects of chemotherapy or radiation.

In partnership with Alaska Airlines, renowned fashion designer and Seattle Children’s supporter Luly Yang presented a fashion show to unveil her new collection, while generously sharing the runway spotlight with honored guests representing the important cause.

The show was kicked off by three pint-sized models – 4-year-old Greta Oberhofer, 5-year-old Lucy Watters and 7-year-old Mason Nettleton – each a courageous cancer fighter.

Alaska Airlines paired three of their pilots and captains with each of the kids as they individually strutted down the runway in their custom-made ensembles designed by Yang.

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How Microsoft Data Scientists Are Helping Seattle Children’s Solve SIDS

The story of John Kahan and his wife, Heather, losing their son Aaron to SIDS 13 years ago inspired his colleagues at Microsoft to develop a data analysis tool for SIDS research, which they have donated to Seattle Children’s Research Institute. (Photo by Scott Eklund/Red Box Pictures)

John Kahan manages a team of renowned Microsoft data scientists who are changing how society can use data effectively, from deciding when to plant crops to creating predictive business models.

But when he’s not at work, Kahan commits his time to a personal mission: Raising awareness about Sudden Infant Death Syndrome (SIDS) and fundraising for research. John and Heather Kahan lost their baby boy, Aaron, to SIDS shortly after his birth 13 years ago.

When Kahan’s data science team learned about Aaron, they volunteered to apply Microsoft technology to SIDS data and donate the company’s emerging tech tools to Seattle Children’s researchers who study SIDS.

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Study Prompts Call for More Mobile Laboratories to Enhance STEM Education for Youth

Hands-on experiments offered by many mobile science labs, like Seattle Children’s Science Adventure Lab, have been shown to positively impact test scores and drive interest in STEM subjects.

Researchers are calling for a greater focus on science, technology, engineering and math (STEM) education after a new study illustrated the reach and positive impact of mobile science labs in driving continued STEM interest in children in the U.S. – an interest researchers believe educators must work to foster as the demand in the STEM job market continues to grow.

Previous studies have reported that nine of the 10 fastest growing occupations in the U.S. require STEM skills and education, and employers are seeking workers already equipped with STEM knowledge. But according to the 2015 National Assessment of Educational Progress (NAEP)—known as “The Nation’s Report Card”— only one-third of high school students have the STEM skills needed for college-level classes and a career in STEM.

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Baby Flies Across the Globe for Lifesaving Heart Surgery 24 Hours After Birth

Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.

In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.

Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”

“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »

We Must Stand Together to Protect the Health of Our Nation’s Youth

I am deeply alarmed by the American Health Care Act (AHCA) that was passed in the House of Representatives because it puts the health of our nation’s children at risk. As I think about how the bill jeopardizes healthcare access for the more than 30 million children in the country and more than half of the children in our four-state region who rely on Medicaid, I can’t stand idly by.

It’s for this reason I went to Washington D.C. last week to urge our region’s elected officials, from Washington, Alaska, Montana and Idaho, to continue the tradition of fighting for the health and well-being of children irrespective of their condition, disease or parents’ financial status. And I am asking you to join me in making your voices heard.

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Treatment Helps Kids and Teens Control Anxiety

Anxiety is a natural response that alerts people to situations that they find threatening. Anxious feelings are a part of life for kids, teens and adults, but when anxiety is severe, frequent and lasts for months, it requires professional treatment. Dr. Kendra Read, attending psychologist on Seattle Children’s Psychiatry and Behavioral Medicine team, works with kids and teens with anxiety disorders, helping them identify their anxiety triggers and learn how to control their worries and fears.

“Research shows that once anxiety becomes problematic, most kids do not just grow out of it,” said Read. “In fact, left untreated, anxiety can result in problematic long-term consequences that impact academic achievement, employment, substance use, and development of additional psychological disorders, such as depression.” Read full post »

Different Cancers, Same Drug: New Trial Targets Common Genetic Pathway in Tumors

Connor Pearcy, 5, with his family. Born with a tumor that did not respond to traditional therapies, he was enrolled in a clinical trial testing a new cancer drug. After four months of treatment, scans show his tumor is gone.

Connor Pearcy, 5, was born with a tumor below his knee. A teenage boy developed a cancerous thyroid tumor in his neck. Connor and the teenager have very different tumors, but they are both on the same drug. How is that possible?

A new pediatric cancer trial at Seattle Children’s is testing a drug that targets a specific set of genetic alterations associated with soft tissue tumors in different parts of the body. Connor and the other patients in the trial have tumors that harbor one of the characteristic genetic changes the drug is designed to exploit.

Dr. Katie Albert, pediatric oncologist, and Dr. Doug Hawkins, associate division chief of Hematology and Oncology at Seattle Children’s, are overseeing the trial, which is making precision medicine possible for young cancer patients.

“It’s not easy having a child born with a tumor,” Amy Pearcy, Connor’s mom, said. “I appreciate that Dr. Hawkins never gave up looking for something new to offer, and so far it seems like we have found it.” Read full post »

Three Cheers for the Team That Helped Wesslee Overcome Pain

Through Seattle Children’s Pediatric Pain Rehabilitation Program (PReP), physical therapist Sharon Yurs challenges Wesslee Holt to a game of hoops, with some extra balance work added in.

Last spring, Wesslee Holt rolled his ankle at his middle school in Shelton, Washington. The 12-year-old is a dedicated member of his cheer team and was eager to return to the squad quickly. He followed his doctor’s instructions to immobilize the foot and wear a boot — but his pain only increased over time.

Wesslee started using a scooter to keep weight off his foot and rested it as much as possible. Nothing seemed to work. His skin became splotchy and red, and was so sensitive to touch that he couldn’t put a sock or shoe on. He felt depressed and anxious, pulled out of cheer team completely and even left school.

His mother, Steph Fyfe, knew it was time for a different approach. “People wanted to put Wesslee on supplemental security income and call him disabled, but I knew there had to be a way for him to get better,” she said.

She was referred to Seattle Children’s Pain Medicine Clinic and learned Wesslee was suffering from complex regional pain syndrome (CRPS), which sometimes accompanies a routine injury and causes the nerves to send extreme pain messages to the brain. The good news is that Seattle Children’s was able to offer Wesslee a unique treatment option: the Pediatric Pain Rehabilitation Program (PReP).

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Compassionate, Coordinated Care at Seattle Children’s Gender Clinic

Jay waits for his appointment at Seattle Children’s Gender Clinic

Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.

Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.

Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.

Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.

“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”

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Finding Hope, Life-Changing Care 2,200 Miles From Home

Alexis, a 7 year-old vascular anomalies patient from Indiana

By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.

Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.

The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.

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