On the Pulse

At Seattle Children’s, many children and young adults with cancer are finding hope in T-cell immunotherapy – an experimental treatment that boosts a patient’s immune system and uses it to fight a disease.

Seattle Children’s researchers are leading clinical trials in which a patient’s T cells are reprogrammed to express a chimeric antigen receptor (CAR) on the surface of the cell. The CAR is like a puzzle piece that’s designed to attach perfectly to a specific antigen or marker on the surface of the cancer cell. When they attach, the CAR T cells attack the cancer cells as if they were fighting an infection.

In just five years, Seattle Children’s cancer immunotherapy program has grown tremendously to include trials that target leukemia, brain and spinal cord tumors and solid tumors. Curious how these clinical trials work? Read on to learn more about the immunotherapy clinical trial process at Seattle Children’s.

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Harper was diagnosed with acute lymphoblastic leukemia when she was just 10 months old.

When asked about the birth of her daughter Harper, Sydney Beare lights up.

“Harper was 8 pounds, 1 ounce, 21.5 inches and the most beautiful baby I’ve ever seen!” she said.

By all accounts, Harper was an exceptionally happy, and seemingly healthy, baby. She began sleeping though the night when she was just a few days old and almost never fussed, even when teething. Beare said her daughter was “totally content.”

But in July 2017, when Harper was 9 months old, she became seriously ill.

Harper first developed an ear infection, a staph infection and had an infected cut on her finger. During the next month she became lethargic and pale.

Beare noticed bruises on her legs, and later on her back and face. Harper began having diarrhea and vomiting. She also slept all the time. Despite all this, Harper’s well-child checkup in August revealed no concerns.

Then, on Aug. 21, Harper woke up with a fever.

“She was just lying there, with dry, cracked lips, screaming,” Beare remembered, choking back tears. “I was worried something was wrong but I pushed that idea aside because I didn’t want to think anything bad could happen to my baby.”

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April Merrill is a 6-year-old who loves to sing and dance. Yet, her struggle with an anxiety disorder called selective mutism hinders her ability to do the activities that showcase her vibrant and joyful personality.

“Her voice disappears, as April describes it,” said Kelly Merrill, April’s mother. “She said that she wants to talk but can’t seem to find her voice.”

As April was growing up, Merrill noticed signs in her daughter that indicated something might be wrong.

“When April started to talk, she could only verbalize 20 or so words,” said Merrill. “She was 2 years old at the time and I noticed she couldn’t expand her vocabulary.”

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Bretton Chitwood, 18, is an avid hockey player. He was diagnosed with osteosarcoma in 2016, but has since returned to the ice. He now plays with a custom prosthesis.

On May 18, 2016, Kara Chitwood and her son Bretton Chitwood traveled from their home in Lynden, Washington, to Seattle Children’s for what they thought would be a routine outpatient appointment to get magnetic resonance imaging (MRI) on Bretton’s ankle. Instead, they didn’t end up leaving the hospital. That day would become one they would never forget.

The pain Bretton was experiencing in his ankle was more insidious than they could have ever imagined. Doctors found a mass and said they needed to do a biopsy to determine what it was. One possibility was the unthinkable: cancer. Read full post »

Forrest Potter with his younger brother Bryson Potter. Bryson was diagnosed with Leigh Syndrome (LS) as a child, a progressive neurodegenerative disorder.

Forrest Potter grew up at Seattle Children’s watching by the bedside as his little brother faced a debilitating diagnosis, Leigh Syndrome (LS), a progressive neurodegenerative disorder.

Nearly 17 years after his brother’s diagnosis, Potter hopes to once again find himself by the bedside, this time wearing a white coat. When he was younger, there was little he could do for his brother. Today, he’s hopeful he’ll be able to help those in need and that his experiences at Seattle Children’s will help him as he begins a medical journey of his own.

My introduction to medicine was one rooted in fear. Over the course of two weeks, I had developed a routine: Sit in the waiting room collecting my courage, wash my hands, get cleared by the nurse to walk into the pediatric intensive care unit (PICU), get up on the step stool to talk to my unconscious brother for five minutes while looking as little as possible at the giant food processor like machine whirring with his blood. I felt helpless, but there was little more I could do to support my younger brother. Read full post »

Gene therapy holds promise of a potentially safer, more effective path to a cure in infants born without the critical infection-fighting cells of the immune system.

Out of every 60,000 births, a baby arrives to face the world without a fully functioning immune system leaving them unequipped to fight even the most common infections. Children with this rare life-threatening genetic condition, known as severe combined immunodeficiency (SCID), have the best chance at a healthy future if they undergo a stem cell transplant before they are 3 ½ months old.

Seattle Children’s recently opened a clinical trial that is seeking a potentially safer, less aggressive and equally effective path to a cure by using a novel gene therapy to fix the faulty gene that causes the most common type of SCID.

On the Pulse met with the trial’s principal investigator, Dr. Aleksandra Petrovic, a pediatric transplant specialist and researcher at Seattle Children’s Research Institute’s Center for Immunity and Immunotherapies, to learn more about the experimental therapy available through this trial. Read full post »

In honor of National Dog Day, On the Pulse is recognizing three unique four-legged visitors who bring joy to kids at Seattle Children’s.

When a child is in need of some cheering up during a hospital stay, Seattle Children’s knows just the right MVP for the task – Most Valuable Pup that is. With their wiggling tails, wet noses and oozing charm, each of the nine volunteer therapy dogs in Seattle Children’s Animal-Assisted Activities Program harnesses their unique strengths and abilities to bring a smile to every patient they meet.

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Can a child’s neighborhood affect his or her weight status, diet, and activity level? According to new research published today in Obesity, the answer is yes.

Dr. Brian Saelens, a principal investigator at Seattle Children’s Research Institute who led the study, said children living in neighborhoods with favorable nutrition and activity environments, meaning the neighborhoods had at least one high quality park and were more walkable and there was access to healthy foods or less access to less healthy foods, continue to have lower rates of obesity when compared to children living in less favorable neighborhoods. Less favorable neighborhoods were defined as having no or lower quality parks and either no supermarket or a higher concentration of fast food restaurants. Read full post »

At Seattle Children’s, Emma received the correct diagnosis and treatment for her hemangioma.

Donna West remembers her daughter, Emma, being born with a mark on her face. Part of her right cheek was raised and dark purple, like a bruise. A dermatologist diagnosed the mark as a benign extravascular hemangioma, a term that is no longer used, and said not to be concerned. A hemangioma is a collection of extra blood vessels in the skin.

However, as years passed, the hemangioma grew larger and began to hurt. When Emma, now 11, would hang upside down in the playground, it would throb. If she coughed, the mark would get inflamed and shiny.

“When she would have a coughing spell from her asthma or a cold, the pain was like clockwork,” West said. “We were told it could go away, but that wasn’t happening.”

Until receiving care from Dr. Jonathan Perkins, clinic chief of vascular anomalies at Seattle Children’s, who performed surgery on Emma with the help of a new technique called facial nerve mapping, the family didn’t have an accurate diagnosis for the hemangioma or knowledge of treatment options. Read full post »

When other kids ask Reid Watkins, 8, about the leg braces he wears, he likes to tell them they help him ‘walk awesome.’

The outgoing third grader was diagnosed with cerebral palsy and hydrocephalus at 16 months old. Until undergoing two surgeries over the course of two years at Seattle Children’s, both conditions had limited his ability to walk on his own.

That made taking part in this year’s Hydrocephalus Association Seattle WALK to End Hydrocephalus all the more important to Reid. For the last seven years, the Watkins family has participated in the walk at Magnuson Park as a way to raise awareness about the condition. Read full post »