On the Pulse

Taylor Tran (left) and her mother Mai Nguyen. Taylor underwent cancer treatment when she was 2 years old, causing her to go into early menopause when she was just 16.

“You pay the price for having cancer over and over again.”

Mai Nguyen’s words are loaded with sorrow as she speaks about her 17-year-old daughter, Taylor Tran, who is dealing with fertility concerns more than a decade after she survived late-stage cancer.

It’s easy to understand the exasperation Nguyen feels: Her daughter was diagnosed with stage 3 single-cell sarcoma of the kidney when she was 2 years old and was treated with intense chemotherapy and radiation. Now, the treatments that saved her life have put her into early menopause.

“It’s been traumatic,” Nguyen said. “We’ve tried so hard to allow Taylor to have a normal childhood and this feels like one more thing cancer has taken from her.”

Stories like Taylor’s inspired Seattle Children’s urologist Dr. Margarett Shnorhavorian to tackle a challenging area of research that was largely uncharted more than a decade ago. Since then, she’s helped change perspectives and protocols for fertility preservation in childhood cancer survivors. Read full post »

Tara Nadella shares her personal experience as the sibling of a patient at Seattle Children’s and explains why she approaches life with a lens of inclusion.

I’m 17 and a senior in high school. Family time is important to me, especially with my siblings! When my brother, Zain, and I spend time together, we usually listen to music or go to the movies.

Pretty ordinary sibling stuff, but what makes our story particularly unique is the fact that Zain has cerebral palsy.

Zain is 23 and has been a patient at Seattle Children’s for his entire life – so we see the hospital as a second home. We’ve spent a lot of time there, including holidays like Thanksgiving and Easter.

Last year, Zain was in the intensive care unit for his birthday, so we brought the party to him — taking turns visiting his room and singing. The staff was so gracious about everything, and we were able to bring joy to Zain even though he was in a hospital bed.

From my first taste of onion rings in the cafeteria as a child to understanding how to care for my brother today, this hospital has been a partner on our journey. All children and families deserve the exceptional care we’ve been so fortunate to receive at Seattle Children’s. Read full post »

Seattle Children’s nurse practitioner Amber Bock (right), has been vigilant in managing her daughter Izzy’s care since she was diagnosed with arthritis at age 2.

In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.

Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.

“How long had she been in pain?”

Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.

It is often challenging to diagnose juvenile arthritis in young children.

“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”

This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury. Read full post »

From the first time Daisy Martinez heard the thumping of her baby’s heartbeat, she was in love. She always wanted to be a mother and hoped for a baby girl. She even had a name picked out: Aliyanna.

When doctors confirmed Martinez was having a baby girl, she was elated. Unfortunately, her joy was short-lived. During an ultrasound 25 weeks into her pregnancy, the ultrasound technician noticed something amiss. A large lump was growing on Aliyanna’s spine. Read full post »

The joyful sound of caroling could be heard echoing through the halls of Seattle Children’s and Odessa Brown Children’s Clinic (OBCC) this week thanks to two very special visitors, Ciara alongside her and Russell’s new music artist DeAndre. They handed out toys and gift cards to patients and families at the hospital and delighted families with classic holiday songs.

“I’m so grateful we got to come and sing for you all today,” Ciara said. “We believe in you and we’re rooting for you,” she added.

In the inpatient playroom at the hospital, patients and families were overjoyed. They sang along, with some children singing at the top of their lungs with huge smiles on their faces, and others dancing happily to the cheerful tunes. Read full post »

From day one, Harper Foy has defied the odds. When she was born, she was given a 50% chance of survival. Today, the spunky toddler, who loves to dance, sing and pose for photos, is 4 years old and inspiring many.

“Harper is here for a reason,” her mother, Angie Foy, said. “She’s making a difference in the world.” Read full post »

Ellie Osterloh, 17, participated in the clinical trial for Trikafta, a breakthrough cystic fibrosis therapy approved by the U.S. Food and Drug Administration in October 2019. Photo courtesy of Audrey Redfern.

When 17-year-old Ellie Osterloh spins high above the ground from a lyra, a circular hoop used in aerial acrobatics like Cirque du Soleil, she feels empowered.

“On the lyra, it’s an incredible feeling to be so high in the air with no harnessing,” Ellie said. “It’s a lot of adrenaline and I feel like I can do anything.”

Now, thanks to Trikafta, a new drug approved in October 2019 by the U.S. Food and Drug Administration (FDA), Ellie, who participated in the clinical trial for the drug, shares a similar zeal for her future.

“Even though it’s hard sometimes to be so optimistic, I’ve always thought it might be possible to go to college and have kids and a family of my own,” she said. “It’s crazy how my outlook has changed. I’m still processing all the possibilities.”

That’s because Ellie has lived her entire life with cystic fibrosis, a rare, progressive, life-threatening disease. She had her first appointment with Dr. Bonnie Ramsey, the director of Seattle Children’s Center for Clinical and Translation Research, still in her mother’s womb. Hours after birth she was transferred to Seattle Children’s where she began intensive therapy that she’s continued over the last 16 years.

“This is a really big step forward for Ellie and other people living with cystic fibrosis,” said Ramsey, a pioneer in cystic fibrosis treatment. “Ellie is a highly talented young lady with a bright future ahead of her.” Read full post »

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 »

Neurons found in the brain stem gives new clue to nicotine, sudden infant death syndrome link. Source: Getty Images.

Researchers at Seattle Children’s Research Institute have discovered that populations of neurons in the brain stem have a previously unrecognized susceptibility to disruption by nicotine during early brain development.

Published in the Journal of Comparative Neurology, their findings offer a clue to how nicotine exposure in utero could have a lasting effect on the brain’s wiring and give rise to negative outcomes like sudden infant death syndrome (SIDS). Read full post »

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 »