From left to right: Jenna, Ellia, Nathan, and Zach.
For the first three years of her life, Ellia was “the kid who never got sick.”
“We never worried about her,” says Jenna Yee, Ellia’s mom. “She was always very spunky and funny and had this incredibly dynamic personality. We knew from the start she was a fighter.”
But when Ellia was 3 years old, she developed a fever and became lethargic. Jenna Yee took her to a walk-in clinic where she was prescribed antibiotics for an ear infection. A few days later, Ellia woke up with a rash on her arms and legs, and red dots on her neck.
Jenna Yee brought Ellia to their pediatrician, who sent them to Seattle Children’s Emergency Department for urgent blood testing. Ellia’s dad, Nathan Yee, left work to meet them there.
Nathan Yee and Jenna Yee both have professional experience in cancer research. Jenna Yee was a toxicologist who worked on cancer clinical trials and Nathan Yee was helping develop immunotherapy treatments for adults with leukemia and lymphoma at Juno Therapeutics.
“Hearing Ellia’s symptoms, my first reaction was utter denial,” Nathan Yee says. “I was sure nothing was seriously wrong. But driving to the Emergency Department, I realized the truth was screaming in my face. Ellia had a classic presentation of pediatric leukemia.”
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An innovative clinical trial led by Dr. Nicholas Vitanza, a neuro-oncologist at Seattle Children’s, shows promise that delivering cancer-fighting chimeric antigen receptor (CAR) T cells directly to the brain for children and young adults with recurrent or refractory brain and central nervous system (CNS) tumors may be feasible and tolerable.
The results, published today in Nature Medicine, are the initial findings from Seattle Children’s Therapeutics’ BrainChild-01 immunotherapy clinical trial. BrainChild-01 is the first of three such trials seeking to comprehensively target all types of pediatric brain and spinal cord tumors.
Seattle Children’s Therapeutics is a unit in the research division at Seattle Children’s and is taking promising CAR T cell immunotherapies forward to the first clinical trials of their kind for children. As a novel non-profit therapeutic development enterprise, it is devoted to envisioning and testing next-generation cell and gene therapies for pediatric diseases, so children have the medicines they deserve.
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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 »
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 »
It was during a 20-week ultrasound that Sarah Ouellette got life-changing news: Her baby would be born with a serious heart defect.
“They didn’t know if my baby would survive,” Ouellette said. “But I knew deep down that I wanted to fight for my child’s life.”
Feeling lost, Ouellette sought out a second opinion.
“I contacted Seattle Children’s, and it was there that I learned a lot more about my baby’s diagnosis. They made me feel more at ease.”
Ouellette connected with the Seattle Children’s Prenatal Diagnosis and Treatment Program, where she was introduced to Dr. Bhawna Arya, director of fetal cardiology, who guided her every step of the way.
Greyson had a diagnosis of pulmonary atresia with intact ventricular septum, a heart condition where only half of the heart has formed.
According to the Centers for Disease Control and Prevention, congenital heart defects (CHDs) are the most common types of birth defects, and babies born with these conditions are living longer and healthier lives. CHDs affect nearly 1% of, or about 40,000, births per year in the United States.
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When the COVID-19 pandemic first led to a pivot to online instruction in the spring of 2020, the Science Education Department at Seattle Children’s Research Institute was forced to hit pause on in-person programming.
However, thanks to an investment in high-quality equipment and the creativity and adaptability of the Science Education team, the programs have been able to thrive in a virtual format.
Transition to virtual
To pivot to a virtual format, the team purchased a video camera and lighting equipment to make the lessons feel professional, says Dr. Amanda Jones, senior director of education initiatives at Seattle Children’s Research Institute. Read full post »
Seattle Children’s researchers have published a study that has uncovered a deeper understanding of why people who have had mild cases of the novel coronavirus 2019 (COVID-19) lose functional antibodies within a few months.
Last year, while seeing the bulk of research analysis focused on severe cases of COVID-19, a team of researchers led by Seattle Children’s Research Institute’s Center for Global Infectious Disease Research, the largest pediatric infectious disease research center in the country, sought to evaluate the immune responses that occur after people recover from more mild cases of COVID-19. Mild cases, researchers say, are the most common type of cases. Published in Cell Reports Medicine, a team of researchers found that while antibodies did persist over time, they were not the functional antibodies needed to protect someone from reinfection.
The study evaluated a cohort of 34 adults, ranging in age from 24-74 for up to six months. It characterizes antibody responses to infection and does not investigate T cell or vaccine responses. Antibody responses to vaccination are likely to behave very differently and have different longevity.
At first, researchers found a sustained and maturing presence of an antibody called Immunoglobulin G (IgG) among participants, which should normally mean protection from infection of a virus would improve, says Dr. Noah Sather, a principal investigator at Seattle Children’s Research Institute and associate professor at the University of Washington.
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Thanks to wider availability of vaccines and declining local rates of COVID-19, we’ve entered a new period in the pandemic. Parts of life are returning to what families were used to before coronavirus temporarily disrupted so much. As we increasingly return to obligations and pleasure outside of the home, it’s important to be aware that youth and adults alike will be learning to cope with emotions and feelings related to the experiences of the past year.
On the Pulse spoke with Dr. Yolanda Evans, an adolescent medicine physician at Seattle Children’s, about what kids and teens have experienced and how best to support them through this new period of time. Read full post »
For many of us, the past year has been uniquely stressful. Have you felt especially exhausted, struggled to focus or been more irritable than usual? Maybe you’ve found yourself wondering why you can’t cope with the stress better.
“There are very real, biological reasons why we’re finding it harder than usual to perform,” said Dr. Shannon Simmons, a psychiatrist at Seattle Children’s and medical director of the Psychiatry and Behavioral Medicine Unit. “Under today’s stressors, it’s common to feel fatigued, have a shorter attention span, have a harder time planning things or be more easily irritated and frustrated.”
On The Pulse asked Simmons and Dr. Mendy Minjarez, a psychologist and executive director of Seattle Children’s Autism Center, what parents, caregivers and other adults should know about the stress they may be experiencing and how they can best cope with it.
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Since January of this year, following concerns of systemic racism within our organization, we have accelerated our ongoing work to be an anti-racist organization and uphold our core value of equity. Though we’d made a formal commitment to anti-racism last summer, and subsequently launched our Anti-Racism Organizational Change and Accelerated Equity, Diversity and Inclusion Plan last fall, we recognize we must do more – and in greater collaboration.
The key to our transformation – and to the path ahead – lies in taking actions based on conversations and insights from our many stakeholders. We approach the gravity of this transformation and the opportunity to improve with humility in knowing we have not done enough – and our shortcomings have adversely impacted the kids and families we serve as well as our team. Upholding our commitment to anti-racism must be and will be the very fabric of Seattle Children’s future.
We have been in deep and ongoing listening mode so far this year and are grateful for the opportunity to engage in open dialogue to advance this important work. This includes connecting with Odessa Brown Children’s Clinic patients, families and supporters; our team members who identify as Black, Indigenous and people of color (BIPOC); our patient-family advisory council members; and through broader health equity, diversity and inclusion listening sessions and workforce surveys.
Here are some key themes we have heard in these conversations as well as the actions we have underway or have accelerated: Read full post »
