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The Largest Medulloblastoma Trial Makes Monumental Strides Forward for Cancer Research, Increases Survival in Children by 19 Percent

Sammy Loch began experiencing debilitating headaches in 2009. She was a sophomore in high school at the time. When she went to see her primary care provider, they diagnosed her with migraines and prescribed medication to help dull the pain. When her migraines persisted, her doctor recommended Loch get an MRI to rule out anything more insidious.

Days before the MRI, Loch got dressed in a beautiful purple gown, her curly hair bounding in tight curls just at her shoulders. She had been looking forward to the homecoming dance for weeks. She was all smiles, but the throbbing pain in her head was still there. She powered through the dance, determined to have fun. She was completely unaware her world would soon be turned upside down as she danced in the high school gym surrounded by her friends.

On Tuesday, Oct 27, 2009, Loch went in for an MRI.

“The technician was so bubbly and nice,” Loch said. “She told me about the elaborate costume she was working on because Halloween was only a few days away. I remember everything about her demeanor changed when she came back in the room after my scan. My heart sank. I knew something was seriously wrong.”

That night around 8 p.m., her family got a call. Her mother answered, repeating aloud what the voice on the other end of the line was saying. “There’s a mass. You need to go to Seattle Children’s as soon as possible.”

Everything seemed to stop as those words hung heavy in the air.

“It’s cancer,” Loch said. “I just knew it.”

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Seattle Children’s Uses 3D Printing to Plan Complex Surgeries, Creates Custom Care Model

Photo courtesy of Four Oaks Photography.

On January 30, 2019, Nia Mauesby was born. To celebrate her arrival, the setting sun illuminated the Seattle skyline with bright hues of red, orange and yellow. It was one of the most dazzling and memorable sunsets of the year. As quickly as the setting sun dipped over the horizon, the winds began to shift, and the foreboding weather foreshadowed the turbulent journey that lay ahead.

“When my water broke, we had no idea what we were in for,” Reem Mauesby said.

Mauesby and her husband, Timothy, were elated for their daughter’s arrival, but the timing couldn’t have been worse. Stricken with the flu, Mauesby wasn’t able to see her baby girl for 24 hours after giving birth. When Nia was finally was placed on her chest, she felt a heavy sense of relief, but that feeling would soon be stripped away. Read full post »

Dr. Gina Sequeira Discusses Gender Identity and Explains How Caregivers Can Support Gender-Diverse Children

This week, JAMA Pediatrics published an article by Dr. Gina Sequeira, co-director of Seattle Children’s Gender Clinic, about gender identity. In the article, Sequeira discusses what gender identity is, explains gender related terms, and offers recommendations to caregivers to help them support gender-diverse children.

Gender identity is unique to each person and is used to describe a person’s internal sense of being male, female, some of both or neither, Sequeira says. Terms like transgender and gender-diverse, may be used to describe individuals whose gender identity differs from the sex they were assigned at birth. Recent estimates suggest as many as 10% of high school aged youth have a gender identity that differs from their sex assigned at birth. Read full post »

Navigating the Digital World and Play During the Pandemic

In 2020, the TODAY Show featured Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, in a story about the evolving digital age and the effect media has on children and their developing minds. A year later, Jake Ward, NBC News correspondent, is following up to learn more about how the pandemic has impacted the use of digital devices. Watch as Ward and Christakis explore again the intersection between a child’s development and the digital world.

The below article features a family navigating the challenges of media usage during the pandemic and their participation in a study led by Christakis to better understand play-based activities.

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The Nadella Family Commits to a Hopeful and Brighter Future for all Children and Families, Supporting Advanced Precision Medicine Neurosciences and Mental and Behavioral Health Care

Zain Nadella is 24 years old. When his family talks about him, they light up. They speak about his eclectic taste in music, his warm sunny smile, and the love he has for his family. Zain has had to struggle against tremendous adversity due to his medical condition. His journey has shaped the Nadella family’s story to one of resilience, empathy, and determination to realize the promise of a brighter future for children with neurological conditions.

Hours after Zain was born, he was rushed to Seattle Children’s Neonatal Intensive Care Unit (NICU). Born with cerebral palsy, he fought for survival in those first few months and required life-saving treatment. His parents, Satya and Anu Nadella, put their trust in the doctors and care providers at Seattle Children’s. Zain’s birth story was not what they had imagined. He was born weighing just 3 pounds and suffered asphyxiation in utero. When they found themselves surrounded by beeping machines and an army of healthcare providers, their focus shifted.

“Like our baby, I too was in survival mode,” Anu said. “I was focused on taking one day at a time.”

Today, Zain still faces many challenges. Zain’s health issues have only intensified as he has grown. He is legally blind and is affected by spastic quadriplegia and has required complex care at Seattle Children’s. The Nadella family likens the hospital to a second home. Read full post »

Study Shows Youth Seeking Gender-Affirming Care Were Satisfied with Telemedicine Appointments During COVID-19

This past year, as many individuals sought health care through telemedicine, a question formed in Dr. Gina Sequeira’s mind. As the co-director of the Gender Clinic at Seattle Children’s, her mission is to make gender-affirming care accessible for all youth, and so the capabilities of telehealth are rightfully an exciting new territory to explore. With the growth of telemedicine and its potential to improve access to care, Sequeira wanted to better understand gender diverse youths’ experiences with and satisfaction receiving virtual care during the COVID-19 pandemic.

Published in Transgender Health, Sequeira, the lead author, found the majority of youth who participated in the study were satisfied with telemedicine and would be willing to use it again in the future. Although many said they preferred in-person visits, about 88% of gender diverse adolescents were satisfied with conducting gender clinic visits using telemedicine.

“Telemedicine has been a great way for us to support gender diverse youth and their families during the pandemic. Because of the limited number of pediatric gender-affirming care providers in the region, prior to the pandemic, many families experienced geographic and cost related barriers to receiving this care. We are hopeful that by continuing to offer gender clinic visits over telemedicine we will be able to overcome some of those barriers.” Sequeira said. Read full post »

Seattle Children’s and Educational Leaders Launch the Washington State School-Based COVID-19 Rapid Testing Program

Dr. Amanda Jones, senior director of education initiatives at Seattle Children’s Research Institute, and her team held a training at Auburn Senior High School to teach school personnel to use point-of-care rapid antigen test cards technology. In one day, the team trained more than 40 school personnel. Pictured above are Sarah Garcia, Alex Chang, Amanda Jones, Billy Roden and Rebecca Carter.

A year ago, many schools shuttered due to COVID-19, forcing schools and families to transition into unknown territory: remote learning. Today, thanks to a partnership between Seattle Children’s and school districts in Washington, schools are one step closer to transitioning back to in-person learning.

Seattle Children’s and educational leaders recently launched the Washington State School-Based COVID-19 Rapid Testing Program. The program, which started with Auburn School District, will eventually expand to more districts across the state.

The pilot program is currently working with 10 school districts across the western Puget Sound region. Each district has the opportunity to create weekly a COVID-19 testing program tailored for its own schools, staff and students.

“The collaboration between the school districts and the local, state and federal government has been truly remarkable. It’s taken the concerted effort of people across organizations to launch this program,” said Dr. Eric Tham, interim senior vice president of Seattle Children’s Research Institute. “I’m incredibly proud of our teams at Seattle Children’s who have worked tirelessly to support this important work and have gone above and beyond to help get kids back to school safely.” Read full post »

Community Gathers to Cheer for Mercy on Her Way to Seattle Children’s for Last Round of Chemo

At 16 years old, Mercy Haub, was diagnosed with Hodgkin lymphoma. She just finished her last round of chemotherapy at Seattle Children’s.

Mercy chronicles her journey through Instagram.

Mercy Haub has wanted to cure cancer since she was 7 years old.

“The irony of it all is unbelievable,” she said.

Today, at 16 years old, that mission still drives her, but now it hits closer to home, more so than she could have ever imagined.

A week before the statewide lockdown went into effect in Washington, Mercy began to feel sick. An assortment of unusual symptoms compounded on one another. She felt weak and fatigued, experienced chest pain and rashes. The symptoms persisted and eventually doctors were able to determine the insidious cause: cancer. Read full post »

Novel Collaborative Care Approach Shows Promise in Treating Youth with Persistent Post-Concussive Symptoms