On the Pulse

Singing During Brain Surgery, Kira Performs to Preserve Her Passion

About four years ago, Kira Iaconetti, 19, began noticing something weird that would happen when she was singing or listening to music.

“It was like a light switch turned off in my brain,” said Iaconetti, a talented self-taught musician who has been performing in musicals since she was 6 years old. “Suddenly, I was tone deaf, I couldn’t process the words in time with the music and I couldn’t sing.” Read full post »


Zack Finds His Beat Amidst a Life Full of Challenges

For 13-year-old Zack Edge, playing the drums came naturally ever since he laid his eyes on his very first drum set at 3 years old.

Yet other parts of Zack’s life didn’t come so naturally, such as his ability to stand or walk.

“Zack was born with cerebral palsy,” said his mother Sara Edge, “and over the course of his short lifetime he’s gone through a lot and has had to overcome so much.”

Cerebral palsy (CP) is a condition that affects muscle movement. The muscles of some children with CP are stiff and rigid, which is called spasticity that leads to stiffness in the muscle and joints causing movement to be very difficult.

“It wasn’t until we went to Seattle Children’s that Zack’s life completely changed,” said Edge.

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Scientist Reflects on Lessons Learned From Nobel Prize Winner

Dr. Shuyi Ma, an infectious disease researcher at Seattle Children’s Research Institute, as an undergraduate student at the California Institute of Technology.

As a female scientist studying tuberculosis (TB) in the Center for Global Infectious Disease Research at Seattle Children’s Research Institute, Dr. Shuyi Ma was ecstatic to learn that her undergraduate mentor became the fifth woman in history to receive the Nobel Prize in Chemistry. She shares her reaction to the news and how her mentor helped shaped her career with On the Pulse.   

When I first heard the news that Dr. Frances Arnold had won the 2018 Nobel Prize, I cried aloud in delight as I jumped up and down in my kitchen. Frances was my academic and research advisor when I was an undergraduate student at the California Institute of Technology (Caltech), so waking up to the news of this global recognition was one of the most exhilarating mornings I’ve ever had.

I started working with Frances as a sophomore. It was amazing to me that her lab was able to apply engineering to biology, so I had asked her if I could learn how she did this. Although I had never worked in an experimental lab before, Frances took a chance on me, giving me the opportunity to gain hands-on experience with her craft, and it in turn crafted me into the scientist I am today.  I still hold close the many lessons she imparted on me, using them to guide my scientific career. Read full post »


Baby With Heart Defects Makes a Dramatic Recovery

Carolina Castañeda and Jesus Farias were driving home from a family outing with Olivia, their newborn daughter, when they heard her making a strange noise. As first-time parents, they thought it might be normal. However, when Olivia continued making the sound, the couple began to worry. They stopped the car, took Olivia out of the car seat, and noticed that her body had gone limp.

“Her hands and legs just stopped moving,” said Castañeda. “I didn’t know what was normal, but it did not look normal at all.”

Castañeda was startled to see Olivia’s blue lips and her eyes rolling back. The couple rushed their daughter to the nearest hospital in Yakima, trying to keep her awake. When they arrived, Olivia’s eyes were closed.

“Nurses ran around the desk and took her out of my arms – they didn’t even ask questions,” said Castañeda. “It all happened so fast.”

Doctors told the family that Olivia’s body had worked so hard to stay alive that her vessels were shutting down. When Olivia finally opened her eyes and looked around, Castañeda said she remembers feeling at peace, like everything was going to be okay.

The hospital flew Olivia to Seattle Children’s from the Yakima airport. The family was told that a helicopter would have been too slow for Olivia, in her condition.

The new parents were shocked to learn that their 2-week-old baby was in cardiogenic shock due to critical congenital heart defects and she would need surgery from Seattle Children’s Heart Center.

“Everything was scary,” said Castañeda. “She was my baby, she was my firstborn.”

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More than Skin Deep: Providing Patients With ‘The Realness’

Dr. Markus Boos and his twin sons.

As a pediatric dermatologist at Seattle Children’s, Dr. Markus Boos shares his experiences as both a doctor and father, and the compassion he strives to bring to his patients to help them find hope in times of struggle.

I recently had a patient return to my clinic for a follow-up visit. One month prior, I had treated her for a couple of minor skin issues. At that time, I had instructed her to return to the clinic for additional care, if she experienced any symptoms again.

When she came back a few weeks later, I was surprised to see her. Her skin had healed, and she was doing well.

After I inquired about the reason for her visit, her mother replied, “because she simply wanted you to know she was doing better.”

“She also wanted you to know that you’re her favorite doctor.”

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Tailor-Made Fish Help Explain Genetic Conditions in Children

At Seattle Children’s Research Institute, scientists are genetically-engineering zebrafish to harbor human DNA mutations known to contribute congenital conditions in children.

More than five years ago, when Dr. Lisa Maves, a scientist at Seattle Children’s Research Institute, first started using CRISPR to make genetic alterations in zebrafish, she saw the potential for the minnow-sized fish to help doctors understand how genetic mutations contribute to a child’s condition.

“Essentially, we set out to make a patient’s fish,” Maves said. “The zebrafish has a genome that is remarkably similar to humans. As new gene editing technology was just becoming available, I wondered whether we could use this technology to create a fish that mimicked the complex genetic conditions we see in children.”

Maves hypothesized that genetically engineering the fish in this manner would help uncover how different genes affect development and cause disease. Read full post »


Two Years Cancer-Free, Erin Advocates for T-Cell Immunotherapy

At age 2, Erin Cross was diagnosed with acute lymphoblastic leukemia. She achieved remission through her initial cancer treatments, but relapsed in 2016. Out of treatment options, her family found hope in Seattle Children’s PLAT-02 T-cell immunotherapy clinical trial. Erin, now 8, just celebrated her two-year anniversary of being cancer-free. Photo by Jane Mann

Each morning, 8-year-old Erin Cross springs out of bed excited to go to school. A third grader in Chester, England, she loves science and math, and imagines a future as a researcher making “potions” in a lab. She loves cracking jokes, rugby and playing make-believe games with her friends on the playground. For Erin, who spent most of her life in the hospital and away from others her age, she cherishes each day she is able to just be a kid.

“It’s amazing to see Erin back to living a normal life,” said her mother, Sarah Cross. “We’re so thankful that we’re able to enjoy time as a family doing regular things like taking picnics, playing on the beach or going to the zoo. It’s time that we never take for granted.”

Nearly three years ago, Cross faced the devastating reality that she may never see her daughter grow up. At age 2, Erin was diagnosed with acute lymphoblastic leukemia (ALL). She was able to achieve remission through her initial cancer treatments, but in 2016, her family received the shattering news that she had relapsed and was out of treatment options.

That was, until they found hope in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) chimeric antigen receptor (CAR) T-cell immunotherapy clinical trial for children and young adults with relapsed or refractory ALL who are not likely to survive with current treatments. In July 2016, Erin’s family arrived in Seattle for the trial.

“Seattle Children’s threw us a lifeline,” said Cross. “We knew we had to get her there. We moved mountains to save our daughter’s life.”

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Lifesaving Treatments Closer to Home Give Gary More Time to Be a Kid

Gary Bradford was a healthy 2-year-old until 2009, when what first appeared as seasonal allergies developed into a much more serious health condition.

After spending time outside in the pollen-filled air on a spring day, Gary’s face swelled and he developed a rash on his arm.

Three weeks later, the symptoms became more severe as he developed high fevers, sores inside his mouth and muscle weakness that was so bad he couldn’t get up when bending down to pick up his favorite toy.

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Seattle Children’s Brings Cancer Immunotherapy to a Global Stage

Avery Berg, 13, was diagnosed with a rare brain tumor at the age of 10. She endured six weeks of radiation, five brain surgeries, and six months of high-dose chemotherapy. Avery has been cancer-free for more than a year, but her mom Kristie says that cancer immunotherapy offers hope that other children can become cancer-free without having to endure such harsh therapies.

T-cell immunotherapy continues to take center stage as one of the most promising new cancer therapies of our time. What once sounded like a dream – reprogramming a person’s own immune system to fight cancer – is remarkably becoming a reality. What’s more; doctors and researchers in our own backyard are leading the way in developing this therapy for children and young adults around the world.

From covering the opening of the first T-cell immunotherapy trial when I was an anchor at KING 5 TV, to now seeing this therapy being tested in seven open clinical trials at Seattle Children’s and applied to a variety of cancers, I’ve been amazed to watch the enormous strides researchers have made in the field over a few short years.

The results also speak for themselves – 93% of patients with relapsed or refractory acute lymphoblastic leukemia in Seattle Children’s phase 1 PLAT-02 trial achieved complete initial remission. About 50% were still in remission one year after therapy. Some patients, who were otherwise unlikely to survive with traditional therapies, are still in remission nearly five years after receiving the experimental treatment. This is encouraging news, especially since leukemias are the most common childhood cancers.

And on Oct. 12, I will witness yet another major milestone – Seattle Children’s will bring their groundbreaking therapies to a global stage. Read full post »


Toddler’s Heart Rebounds After ‘Frankenstein’ Heart Procedure

Katja, now 3, was the youngest patient at Seattle Children’s to undergo the Ozaki procedure.

Although Katarina Anja, or “Katja,” De Groot was born with a rare heart defect called truncus arteriosus, the active toddler never let her condition stop her from running, playing and going to the park.

However, when she was 2 years old, Katja began sleeping for most of the day and withdrawing from the activities she usually enjoyed. That was when her mother knew something was wrong.

“She wasn’t herself anymore,” said Jennifer De Groot. “My daughter is usually a happy-go-lucky child who loves to live life to the fullest. I didn’t know how much longer we could see her like that. It’s like we had reached the point of no return.”

De Groot’s concerns grew, and she knew she needed to seek help for her daughter. Dr. Maggie Likes, Katja’s cardiologist at Seattle Children’s, noticed a difference in her echocardiogram. It showed her aortic valve was not functioning properly.

“We had hit a tipping point,” Likes said. “Between the concerning changes on her echocardiogram and what her mom was seeing at home, it was time to do something about her aortic valve.”

De Groot knew her daughter wouldn’t be able to lead an active lifestyle with a mechanical valve because it would mean that Katja would have to undergo a lifelong regimen of anti-coagulants, commonly known as blood thinners. She made a bold move and asked the Seattle Children’s Heart Center team if they could perform an innovative surgical technique that would repair her daughter’s aortic valve – an unexpected suggestion that led to a collaborative decision.

At 2 years old, Katja would become the youngest child at Seattle Children’s to undergo the Ozaki procedure.

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