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Fine-Tuning CAR T-cell Immunotherapy to Benefit More Kids

December 11, 2019  |  Cancer and Blood Disorders, Research Post Comment

Madeline Boese was one of the patients in Seattle Children’s PLAT-03 trial.

Chimeric antigen receptor (CAR) T-cell immunotherapy, which reprograms a child’s white blood cells so they can seek out and destroy cancer cells, is making a difference in children’s lives. Currently, Seattle Children’s has multiple trials open that could benefit children and young adults with relapsed or refractory cancers. In October, Seattle Children’s opened a new pediatric research facility, Building Cure, to accelerate discoveries such as immunotherapy.

Seattle Children’s researchers are continuing to realize the promise of CAR T-cell immunotherapy and improve outcomes in difficult to treat pediatric cancers. They are applying knowledge gained from ongoing clinical trials to study effects on the youngest patients, develop new interventions to prevent side effects and boost T-cell persistence, and to better understand resistance to therapy.

Research recently published in major scientific journals and presented at the 2019 American Society of Hematology (ASH) Annual Meeting contributes new insight guiding the evolution of the experimental therapy. Here, On the Pulse summarizes their findings. Read full post »

Teen With Alert Dog Hopes to Help Other Kids With Diabetes

November 14, 2019  |  Patient Stories Post Comment

With the support of his alert dog Morris, the latest insulin pump technology and his care team, Cameron is thriving and hopes to be a role model for other kids with diabetes. He shares his experience in time for National Diabetes Month.

Wherever 14-year-old Cameron Hendry goes – school, soccer practice, wakeboarding, shopping, even a trip to Hawaii – a Labrador retriever named Morris follows.

Morris is not only the high school freshman’s beloved pet. He is Cameron’s diabetes alert dog, always there on his left side to monitor his blood sugar and let him know when his level is too high or low.

Seven years ago, Cameron was diagnosed with type 1 diabetes, an autoimmune disease in which blood sugar levels rise because the body stops making insulin. The chronic condition requires lifelong insulin via shots or an insulin pump.

Symptoms of type 1 diabetes include increased thirst, urination and weight loss. Fortunately, Cameron’s parents recognized his symptoms early and took him to Seattle Children’s emergency department. Cameron was diagnosed and his family received intensive education on how to manage his condition, which included checking blood glucose levels and giving insulin shots multiple times each day. There is currently no cure, though promising research is underway.

“Type 1 diabetes is quite a burden day to day on both kids and their parents,” said Erin Sundberg, ARNP, a pediatric nurse practitioner with Seattle Children’s Endocrinology and Diabetes team, who has been seeing Cameron for the past two years. “It requires round-the-clock vigilance because glucose levels can change due to activity and illness, so patients need to check their blood sugar multiple times each day.” Read full post »

Families Raise Awareness of Rare, Underdiagnosed Lung Disease

October 28, 2019  |  Patient Stories, Research 3 Comments

Isabelle Zoerb, 13, has a rare genetic disorder called primary ciliary dyskinesia (PCD).

Like a typical 13-year-old, Isabelle Zoerb plays volleyball and tap dances. She also regularly uses an inhaler, takes antibiotics to minimize lung inflammation and wears a therapy vest that vibrates to help clear her lungs. A device in her chest provides intravenous medication when needed.

This is because Isabelle has primary ciliary dyskinesia (PCD), a rare genetic condition. Cilia are tiny hair-like cells in airways that beat in a coordinated way that clear out germs, mucous and particulates like dust from the respiratory tract. In people with PCD, cilia do not beat properly, which prevents bacteria from clearing the lungs, sinuses, nose and ears.

When Caroline Zoerb adopted Isabelle from China as a toddler, Isabelle’s organs were reversed like a mirror image. She had been born with a hole in her heart and was constantly sick. Seeking answers, the family met Dr. Margaret Rosenfeld, an attending physician and researcher at Seattle Children’s, who thought she might have PCD based on her symptoms.

Seattle Children’s is the only PCD referral center in the Pacific Northwest, with patients coming from Wyoming, Idaho, Oregon, Alaska and Montana. Providers see patients for regular follow-ups to make sure their needs are being met and they are responding to their therapies.

“We always seem to make our way to Seattle Children’s because they have the expertise to help someone with such a rare disease,” Zoerb said. Read full post »

Helping Kids Cope With Anxiety Over Distressing News

October 9, 2019  |  Health and Safety, Mental Health Post Comment

In an episode of the popular TV show Big Little Lies, a character’s young daughter has an anxiety attack, prompted by worries about climate change. Though this may seem drastic, Dr. Kendra Read, attending psychologist and director of anxiety programs with Seattle Children’s Psychiatry and Behavioral Medicine team, is having many conversations with families about how to cope with distressing news, such as mass shootings, crime, global politics and natural disasters.

“It’s common for kids to be worried about events that might potentially harm them or their loved ones,” Read said. “Worrying is normal and a typical part of life, but I tend to talk to children whose anxiety over current events impacts their daily functioning. They exaggerate the likelihood of bad things happening and underestimate their ability to cope with things.”

The key is helping kids cope with the worry about these events happening, even though the likelihood is small. With school back in session, Read offers advice to families whose children might experience heightened anxiety after a frightening news event.

“We want to bolster kids’ coping abilities and teach them how they can help themselves,” Read said. Read full post »

A 2019-20 Update on Flu and Other Vaccines

October 3, 2019  |  Health and Safety Post Comment

With school back in session, families are juggling classes, homework and after-school activities. Making sure kids are up-to-date on vaccinations and prepared for the upcoming flu season is also important.

“Immunizations are our chance to prevent infections before they happen and keep our children healthy,” said Dr. Matthew Kronman, a pediatrician and associate professor of pediatric infectious diseases at Seattle Children’s. “Because children are around so many other kids at school, there is a high chance for passing infectious diseases from one child to the next.”

To make it easier for busy families, On the Pulse asked Kronman what parents should know about back-to-school vaccines, including recommendations for the 2019-20 flu season and information about the measles, mumps and rubella (MMR) vaccine, which he noted is especially important after this year’s measles outbreak. Read full post »

Study Helps Parents Build Resilience to Navigate Child’s Cancer

September 18, 2019  |  Cancer and Blood Disorders, Research Post Comment

Credit: E. Dubois Photography

Tatum Fettig remembers when her family’s lives changed forever. In 2016, her daughter Teagan began vomiting and struggling with balance. At Seattle Children’s, Teagan, then 2, was diagnosed with a pediatric brain tumor, medulloblastoma. Through the grueling process of chemotherapy treatment and radiation, Fettig and her husband were by Teagan’s side, trying to cope with the uncertainty of whether they would see their youngest child grow up. They mourned the loss of their former life.

“Having a child with cancer is traumatizing,” Fettig said. “It doesn’t mean you’re broken, but it affects the whole family. People tell parents to take care of themselves, but when your kid is sick, you can’t think of anything else.”

Fettig’s experience is not uncommon. Research shows that parents of children with cancer experience psychological stress during the child’s treatment. After treatment is complete, parents report higher anxiety, depression and posttraumatic stress than the average population. However, formal mental, emotional and social support for parents is not typical after a child’s cancer diagnosis.

In a study published in JAMA Network Open, Seattle Children’s researchers addressed this need, adapting an intervention previously used for teens and young adults with cancer. They found that one-on-one sessions teaching skills through a tool called Promoting Resilience in Stress Management for Parents (PRISM-P) improved resilience and benefit finding, or personal growth, among parents of children with cancer. Read full post »

Climate Change Effects on Skin: A Q&A With Dr. Markus Boos

August 13, 2019  |  Health and Safety Post Comment

Dr. Markus Boos, a pediatric dermatologist at Seattle Children’s, with one of his sons.

Climate change, a result of elevated carbon dioxide levels, leads to environmental changes that affect everyone, says Dr. Markus Boos, a pediatric dermatologist at Seattle Children’s. The 20 warmest years on record globally all occurred in the last 22 years, with the past 5 years being the warmest. While natural disasters such as wildfires, hurricanes and other forms of extreme weather can cause lasting physical, mental and emotional harm to all people, specific populations are more adversely affected. This includes the elderly, individuals with disabilities and children.

These major environmental changes put children’s health and safety at risk, according to the American Academy of Pediatrics. Recent reports have estimated children under age 5 bear 88% of the burden of disease due to climate change. On the Pulse talked to Boos about how climate change impacts skin conditions in children, and how parents can protect their kids from ultraviolet (UV) radiation. Read full post »

What Parents Need to Know About Vaping

July 16, 2019  |  Health and Safety Post Comment

Mango, fruit and crème are just a few of the nicotine flavors that may be drawing kids and teens to electronic cigarettes and vaping. In recent years, rising rates of youth in the United States using e-cigarettes has grown into a public health epidemic.

According to the U.S. Centers for Disease Control and Prevention (CDC), e-cigarette use jumped 78% among high school students from 2017 to 2018. Last year, more than 3.6 million middle school and high school students in the U.S. used e-cigarettes. The products’ surge in popularity led the Food and Drug Administration to restrict fruit and candy flavored e-cigarettes at gas stations and convenience stores in 2018.

“I have absolutely seen an increase in teens using e-cigarettes, and so have hospitals and schools across the country,” said Dr. Yolanda Evans, associate professor of pediatrics in adolescent medicine at Seattle Children’s. “With these highly addictive products becoming more popular and readily available, it’s important for parents to know what e-cigarettes are and how to discuss vaping with their children.” Read full post »

After Tragedy, Family Raises Awareness for Drowning Prevention

June 13, 2019  |  Health and Safety, Philanthropy Post Comment

At 3 years old, Yori Tsunoda was a bright and energetic boy who was always on the go.

“Yori had a huge personality,” his mother, Chezik Tsunoda, said. “As the third of four boys, he knew how to stand out. He was really silly, always made everyone laugh and loved playing with his brothers.”

The toddler had a knack for puzzles and a vast knowledge of airplanes. One of Yori’s favorite books was an airplane encyclopedia and he could name any plane by the picture.

Less than a year ago, Yori was at a friend’s house playing in the pool when he quietly slipped below the surface. When Yori was pulled from the water, it was clear that he was not breathing and did not have a pulse. After a few minutes of CPR, first responders arrived. They were able to revive his heart and transfer him to Seattle Children’s.

While Yori’s body eventually recovered, his brain never regained function due to a severe lack of oxygen, which is unfortunately the case with many drowning victims. Two weeks later, he was pronounced brain dead and passed away on Sept. 1, 2018.

“I had no idea when we walked into the hospital that we would not be walking out with him,” Tsunoda said. “As a parent, you assume it’s going to be okay, but it wasn’t. We were completely devastated.” Read full post »

Mother of Micro Preemie Twins Shares NICU Advice

May 9, 2019  |  Neonatology, Patient Stories Post Comment

At 10 months old, Amelia and Calvin Phillips have proven they are fighters, overcoming multiple obstacles to get to where they are today. The twins were born as micro preemies, a term used for babies born before 26 weeks gestation, or who weigh less than 1 pound, 12 ounces.

Throughout their time in Seattle Children’s Neonatal Intensive Care Unit (NICU), their parents, Amanda Littleman and Nathan Phillips, have been by their side. In time for Mother’s Day, Littleman shares her story and advice to mothers in a similar situation.

“Everyone tells you that the NICU will be a rollercoaster ride, and it really is. But it does get better,” Littleman said. “Just seeing Calvin and Amelia today makes all the ups and downs and scary conversations worth it. I can’t believe how far they have come since the day they were born.” Read full post »