On the Pulse

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 »

Luella Konsmo is an avid fan of superheroes, and so when she broke her arm at the end of May and needed a cast, she knew exactly what she wanted.

Samantha Konsmo, Luella’s mother, said her love of superheroes started with her older brother, Cruz.

“He loves superheroes, and she loves him,” Konsmo said.

Luella and her family were enjoying a stroll around Green Lake in Seattle, when Luella fell and broke her arm. Their day of fun in the sun turned into a trip to Seattle Children’s Emergency Department.

When doctors in the Emergency Department asked Luella what color cast she wanted, the beaming 5-year-old didn’t hesitate. She said she wanted a “Thanos arm.” Read full post »

Last week, 18-year-old Michael Albrecht walked down the hall of Seattle Children’s Cancer Care Unit in his purple cap and gown. His tassel and honor cords swaying as he walked with his IV pole by his side. He couldn’t attend his high school graduation because was undergoing cancer treatment, and so his care team put on a special graduation just for him at Seattle Children’s. It wasn’t how he envisioned his graduation, but as he always does, he looked on the bright side of things. He had made it.

He posed for photos, high-fived his nurses and doctors and received a mock diploma his child life specialist created for him. It wasn’t the real thing, but the experience was close enough to bring a smile to Michael’s face. The simple ceremony wasn’t the only thing his care team had planned though. They had more in store to celebrate such a monumental milestone. Read full post »

In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.

From as early as Torin could remember, they used writing as a way of expressing emotion.

“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”

Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.

Each individual should have the power to create their own story and be true to themself.

Read full post »

Seattle Children’s patient Andrew Peterson with Dr. Ghassan Wahbeh and nurse Teresa Wachs on the day of his Eagle Scout Court of Honor ceremony.

The numerous merit badges adorning 17-year-old Andrew Peterson’s olive green Boy Scout sash not only signify his accomplishments, but illustrate how far he has come.

Andrew’s journey of overcoming a difficult illness that left him in and out of the hospital during most of his early childhood years, led him to recently receiving the highest achievement in Scouting, attained by only about 2% of all scouts.

“Becoming an Eagle Scout has allowed me to reflect on how much I’ve gone through to get to this point,” Andrew said. “I’m grateful for all of the support I’ve received from various people over the years.”

Among Andrew’s friends and family that were present as he received his Eagle Scout medal during a special ceremony in April, were two guests who witnessed firsthand the transformation Andrew made from being a sick and fragile boy to the confident young man that stood before them.

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Sonny D’Ambrosio, age 7, here with his parents, was diagnosed with an autoimmune condition called IPEX as an infant.

Earlier this year, Nicole D’Ambrosio found herself in front of a room full of scientists that were gathered in part to discuss their progress on a novel cell therapy that has the potential to one day save her son’s life.

She had been asked to present her family’s story as part of a company-wide meeting at Casebia Therapeutics in Boston. As she began, she recounted how her only child, 7-year-old Sonny, has reached the brink of death more times than she can remember because of the rare autoimmune disorder he was diagnosed with as an infant. How the bone marrow transplant he received was the only thing that could save him, but caused endless complications, including skin necrosis and epilepsy.

How the thought of going through another transplant when the initial transplant failed compelled her and her husband to pack up their home and move 3,000 miles west to seek other options. How she lies awake at night praying that Sonny’s body can stay strong enough until a safer treatment comes along. How, despite everything he’s been through, Sonny is still a happy little boy with a wicked sense of humor. Read full post »

Today, U.S. News & World Report named Seattle Children’s to its Honor Roll of the 10 best children’s hospitals in the nation.

The annual survey ranks hospitals on outcomes and quality-related information, including success in managing patients, commitment to best practices, nurse staffing ratios, safety, and availability of specialty care. Rankings also factor in each specialty’s reputation, as assessed by specialists at other institutions around the country.

For 2019, Seattle Children’s is ranked #10 out of nearly 200 pediatric hospitals that were evaluated. U.S. News & World Report ranks pediatric hospitals in 10 specialty areas. In every one, Seattle Children’s ranked in the top 20, and several ranked in the top 10:

• Nephrology: #8
• Diabetes and Endocrinology: #10
• Neurology and Neurosurgery: #10
• Cancer: #11
• Pulmonary: #12
• Neonatology: #14
• Urology: #15
• Cardiology and Heart Surgery: #16
• Orthopedics: #17
• Gastroenterology and GI Surgery: #18

Read full post »

Jay Jones, wife Kara, and their daughter Hunter Rose enjoying time at home in 2018 in between chemo treatments.

Dads are expected to instinctively be strong like a bull, right? That means stepping up to the plate and handling any situation that arises with ease. However, it is much more difficult to keep up this facade in times of tremendous stress, like learning your daughter has a life-threatening disease. The problem for me was that it was impossible to live up to the kind of “strong” I was telling myself I needed to be.

Up until my daughter’s stage four high-risk neuroblastoma diagnosis in 2017, I believed in the stereotypical definition of strong. Yet at the end of that first day, I realized my definition of strong was off a bit.

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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 »

Arabella Smygov, 7 months, of Lynnwood, Washington was one of the first babies in the state to receive the gene therapy, Zolgensma. The U.S. Food and Drug Administration approved Zolgensma for the treatment of Spinal Muscular Atrophy in children less than 2 years of age this month.

When Arabella Smygov was diagnosed with spinal muscular atrophy (SMA) type 1 at 3 months old, the first recommendation Dr. Fawn Leigh, a neurologist at Seattle Children’s, gave her parents, Sarah and Vitaliy, was to wait on searching for information about SMA online.

This is because up until a few years ago, SMA type 1 was a fatal diagnosis. Most of the information available online painted a bleak picture. Babies diagnosed with SMA type 1, the most severe and common form of the neurodegenerative disease, usually don’t survive beyond age 2 and if they do, they require full support for breathing from a ventilator.

Leigh had good reason for wanting her parents to have hope for Arabella’s future. Two treatments, including the first-ever drug approved for the condition by the U.S. Food and Drug Administration (FDA) in 2016 called Spinraza, and Zolgensma, a gene therapy approved by the drug agency this month, are rapidly changing the trajectory for children with Arabella’s condition.

“I always remember back to when I had to offer my first SMA diagnosis,” Leigh said. “I was heartbroken to tell this young couple that we didn’t have anything for their baby. Now, we’re planning a future for these babies because we have not one, but two good treatment options.” Read full post »