On the Pulse

Reaching New Heights: Champion for Pediatric Research Reflects on National Role

Recently appointed to the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema is a passionate champion for the patients and families who participate in research studies. Here, Diekema is photographed enjoying another passion: hiking and mountaineering.

As a newly appointed member of the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema has always had a passion for interpreting and applying the regulatory laws for research involving human subjects to support the children and families that participate in research at Seattle Children’s.

Although he just assumed his role on the national committee that guides medical research activity across the U.S. this July, Diekema is no stranger to research oversight: he has served as the chair of Seattle Children’s Institutional Review Board (IRB) for the last two decades. In his time as chair, he’s witnessed Seattle Children’s Research Institute grow from a fledgling initiative into the burgeoning enterprise it is today, overseeing hundreds of research studies across nearly every pediatric specialty.

Here, Diekema reflects on what he’s most looking forward to as a member of SACHRP and why it’s very likely you’ve never heard of an IRB before. Read full post »


Boeing Donates $2.5 Million to Help Fund Vital Programs at OBCC

Odessa Brown Children’s Clinic (OBCC) is more than a medical home for families. OBCC is often affectionately called a second home by the patients and families it serves, and the clinical staff are referred to as an extension of their family. OBCC is a clinic, but it’s also something much larger: it is hope.

The team at OBCC represents the communities they serve and advocates for the well-being of patients and families both inside the walls of the clinic and beyond.

Today, Boeing has committed to investing $2.5 million to help fund vital programs at OBCC and a new, second OBCC to better serve under-resourced, ethnically diverse communities. Read full post »


Pools at Home: Safety Tips for Caregivers

Summer is heating up and COVID-19 has left public pools closed and many beaches and lakes without lifeguards. Because of this, families are turning to their own backyards to stay cool by purchasing temporary above-ground pools. These types of pools have specific drowning and safety concerns that families should be aware of.

Dangers of backyard pools

Backyard pools in general pose the greatest threat to children ages 1 through 4, who are unlikely to have had swim lessons and unaware of the dangers of water. Backyard pools tend to be placed close to a house, so it is easy for young children to get out of the house and into the water without anybody noticing.

“Kids have drowned when parents didn’t mean for them to be in the pool,” said Isabell Sakamoto, Suicide and Injury Prevention Program Manager at Seattle Children’s. “With that in mind, having a pool set up in the backyard requires a different level of attention than planning a day at the lake or ocean.”

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With Cancer on the Back Burner, Champion Junior Chef Cooks Up His Dreams

Fuller Goldsmith, 16, has always dreamed of being a top chef.

After winning the Food Network’s Chopped Jr. reality TV cooking competition, Fuller Goldsmith, 16, was well on his way to achieving his dreams of becoming a professional chef. It was a future that was soon in jeopardy when life for the aspiring chef took an uncertain, but all too familiar turn. In late 2018, Fuller learned his cancer had returned for a fourth time.

Having undergone treatment for acute lymphoblastic leukemia (ALL) since age 3, Fuller was out of standard treatment options. Their local oncologist told the Goldsmiths about the cancer immunotherapy clinical trials at Seattle Children’s. He thought the experimental chimeric antigen receptor (CAR) T-cell immunotherapy, which engineers a patient’s own immune cells to target and eliminate cancer cells, might offer the best hope for Fuller. Read full post »


Cultivating a Healthy Environment for Our Children

Dr. Markus Boos and his son plant a tree during an event in March.

In unprecedented times like this, we often reflect on what we as humans can do to better our world. In terms of climate change, there are many ways we can make a difference, whether on a small or large scale, in order to create a sustainable and healthy environment for all.

Seattle Children’s is committed to fulfilling its mission of treating the whole child, and with this comes the responsibility of understanding the facts, sharing our knowledge, and developing ways to combat climate change and the drastic impact it has on our health.

Children are especially vulnerable to the health effects of climate change, and as an organization, we are striving to minimize our carbon footprint and improve the health and well-being of our patients, families, workforce and our local and global community.

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Returning to Sports Safely During COVID-19

As our state and counties progress through the Safe Start phases, our local athletic teams and activity centers will look to return as well. We are all anxious to get back to our regular activities, but how can we ensure that we are doing this the safest way possible?

Our athletic training team is here to help. We have compiled recommendations from the Centers for Disease Control and Prevention (CDC), Washington State Department of Health, Washington Interscholastic Activities Association (WIAA), National Federation of State High School Associations, and Korey Stringer Institute. Our goal is to provide you with some questions to ask and information to look for so that you can feel prepared and make the most informed choices around re-engaging your child safely into sports. Read full post »


Like Mother, Like Daughter: Sharing a Craniofacial Care Team and Condition

Twins Melody (top) and Lyric Allen were born amidst the COVID-19 pandemic. Melody, like her mother, was born with a condition called craniofacial microsomia and needed care through in-person and telehealth appointments provided by Seattle Children’s Craniofacial team in the immediate days, weeks and months following her diagnosis.

Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.

Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.

Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney. Read full post »


From Stunning Diagnosis to Unexpected Hope: MEK Inhibitor Proves Amazing for Grace

Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.

Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.

For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.

To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »


Reason to Celebrate: The Graduating Class of 2020

The patients at Seattle Children’s inspire. Through their tremendous stories, we have the opportunity to learn about what it means to be brave—what it means to persevere. Monumental accomplishments demand to be celebrated.

Over the years, Seattle Children’s has had the honor of sharing the incredible stories of our Patient Ambassadors. Several of those that already shared their personal and trying stories have reached a new milestone: graduation. Though 2020 has been one of the most challenging years in decades, the tremendous accomplishments of our patients are all the reason to celebrate.

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“You Don’t Have to Know Yourself Right Away”: Iris Shares Her Journey of Self Discovery As a Transgender Woman

In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.

In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.

“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”

Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”

For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.

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