On the Pulse

When Your Child’s Life Is in Someone Else’s Hands: The Williamses Put Their Trust in Seattle Children’s Surgical Team

Kelli Williams gives her son, Isaac, who has been in remission for two years after undergoing treatment for stage 4 high-risk neuroblastoma, a piggyback ride in the rain.

Kelli Williams holds her son, Isaac, who has been in remission for two years after undergoing treatment for stage 4 high-risk neuroblastoma.

On July 19, 2017, Kelli and Dennis Williams sat in a pre-op room at Seattle Children’s with their 22-month-old son, Isaac. Kelli hugged her little boy close. He was dressed in a yellow hospital gown, happily playing with the iPad Child Life had loaned him. Kelli and Dennis did their best to appear calm in front of their son, but inside they were terrified.

Isaac had stage 4 high-risk neuroblastoma. He’d already been through four months of chemotherapy and now Dr. John Waldhausen, a surgeon specializing in neuroblastoma cases, was going to remove a tumor the size of a navel orange from his abdomen.

“I had been so focused on managing Isaac’s treatment plan that it didn’t hit me until that morning that my son was about to be lying on an operating table,” remembered Kelli. “I just held him and tried not to cry.”

The day before Isaac’s surgery, the Williamses invited their family members and their church pastor into their home.

“We all circled around Isaac,” said Kelli. “Our pastor prayed over him, he prayed for Dr. Waldhausen, that his hands and his team would get out exactly what needed to come out, and nothing more.”

As they waited in the pre-op room, Kelli and Dennis realized it would be the last time they would see Isaac’s smooth, flawless belly. After surgery, he would have a large scar, stretching from hip to hip and up to his chest, a permanent reminder of his illness.

“I lifted up his shirt and tickled his stomach before he went in, knowing it would never look the same,” remembered Dennis. “It made me pretty sad.”

When a nurse came to get Isaac, Kelli reluctantly handed over her child.

“We’re going to take good care of him,” the nurse kindly reassured her.

Isaac happily waved goodbye to his mom and dad, and they kept up their smiles until he was out of sight. Then Kelli broke down, letting out all the tears she’d been holding back. Read full post »


Leaving “No Stone Unturned” for Children with High-Risk Leukemia

Henry Lawrence (left) with nurse coordinator, Shauna Sinclair. Henry received care for aggressive acute myeloid leukemia as part of Seattle Children’s High-Risk Leukemia Program.

There are two fateful phone calls Robin Lawrence will always remember.

The first, an unexpected late-night call from her son’s pediatrician. He had just reviewed the results from his recent blood work, and something was off. The doctor instructed Robin to immediately take then 13-month-old Henry to the nearest children’s hospital to get it checked out. He said that they had to consider it could be cancer.

She remembered thinking in the moment, “That’s ridiculous. Of course, he doesn’t have cancer.”

Days later, Henry was diagnosed with acute myeloid leukemia (AML), an aggressive childhood cancer.

The second call occurred not long after Henry’s leukemia returned for a third time. At the time, Henry was in between treatments. Another round of chemotherapy had temporarily put the cancer into remission, but the Lawrences knew the statistics were not in their favor. The likelihood the leukemia would come back was high.

Their conversation was the first of many with Dr. Todd Cooper, co-interim division chief of Seattle Children’s Cancer and Blood Disorders Center and director of Seattle Children’s High-Risk Leukemia Program, as part of a second opinion service the program offers.

By the end of the call, Robin and her husband, David, knew Seattle Children’s was the best place for Henry should the cancer ever come back. In the coming weeks, they decided to move from their home in Southern California to Seattle for Henry’s medical care.

“When we talked to Dr. Cooper, it was very clear to us that Seattle Children’s is on the forefront of cutting-edge research and treatments for pediatric high-risk leukemia,” Robin said. “Our son’s cancer was in remission, but we understood that it was very likely to recur. We wanted to be in Seattle, ready to get whatever the best care for Henry would be when that time came.” Read full post »


Before EMTALA, There Were Black Women With Hidden Histories

Dr. Sabreen Akhter (left) and Susie Revels Cayton (right)

Dr. Sabreen Akhter (left) reflects on how Susie Revels Cayton (right, courtesy of the University of Washington) and the Dorcas Charity Club partnered with Seattle Children’s to establish an ongoing policy of admitting and treating sick or malnourished children regardless of their race, religion or the ability to pay.

One of the things I take great pride in, as a pediatric emergency physician, is that the Emergency Department (ED) is a place where the doors are always wide open.

The ED is a place that takes all patients, no matter how minor or major the concern; no matter the time of day; no matter the ability to pay; no matter the language, race, religion, or identity — our unifying goal is that all will be seen and be given compassionate care.

As an ED provider, I see my work as a kind of care that is more rudimentary even than primary care. It is a place of hope and sanctuary to the patients and families that we see, for the worried parents bringing their child in at all hours of the day or night, and for those who have no access to their own pediatricians.

This “open door” policy of the ED was not always the norm at pediatric hospitals. Prior to the passage of the Emergency Medical Treatment and Active Labor Act (EMTALA) in 1986, private hospitals commonly “dumped” patients, mostly those who were poor and minority status, into county hospital systems where they would fare much worse. This was often done without the patient’s consent. After review, it was determined that this practice of denying care to certain patients was primarily due to financial reasons and was unethical. Monetary penalties were introduced for hospitals found to be in violation of this law, and soon the landscape of emergency and hospital care changed permanently. Read full post »


Novel Collaborative Care Approach Shows Promise in Treating Youth with Persistent Post-Concussive Symptoms

Hannah Nash suffered a concussion in 2018 and experienced PPCS. Today, she attends the University of Washington.

On Dec. 26, 2018, 18-year-old Hannah Nash, an avid basketball player, was hit in the head while at basketball practice. She initially felt a sharp pain and her head felt foggy. She recalled leaving practice abruptly. The next day, she played in a game, but she didn’t feel like herself.

“I played terribly,” Nash said. “I was just off.”

She went to her pediatrician, and they treated her symptoms like a concussion. She was told to rest. On Jan. 3, 2018, she fainted in her kitchen and hit her head again.

Every year, an estimated 1.1 to 1.9 million youth suffer a sports-related concussion. Common post-concussion symptoms include headache, fatigue, irritability, dizziness and poor academic performance. Depression and anxiety are also commonly reported and have been shown to be associated with prolonged recovery from concussion. For most individuals, symptoms resolve within days or weeks of a concussion, but for youth like Nash, that isn’t always the case. For adolescents who experience persistent post-concussive symptoms (PPCS), the burden on their families, academic achievement and other areas of life can be enormous. Read full post »


Simple Ways Kids Can Become Activists in Their Community

In celebration of Black History Month, On the Pulse spoke with Dr. Yolanda Evans, an adolescent medicine specialist at Seattle Children’s, about simple yet powerful ways we can encourage and teach kids to become activists in their community what this month means to her.

Engage your kids in conversation

It starts with role modeling and engaging in conversation.

“As a family, I encourage having conversations with your kids around differences and embracing differences,” Evans said. “Instead of ignoring or not talking about issues about inequalities and injustices, allow for dialogue and speak in terms appropriate to their age level.”

Evans suggests using books as conversation starters.

Antiracist Baby is a great book,” Evans said. “There are also other kids’ books that highlight African American contributors which are educational and foster positive role models.”

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Light and Genetic Probes Untangle Dynamics of Blood Flow Through the Brain’s Vast Capillary Network

The human brain has over 400 miles of total vasculature, yet little is known about the tiny capillaries that make up much of this intricate labyrinth. Understanding how this vast network regulates blood flow in the brain could hold the key to new treatments for neonatal and childhood neurologic conditions, such as stroke and hypoxia, and issues of aging like dementia and Alzheimer’s disease.

While the human brain has over 400 miles of total vasculature, little is known about the tiny capillaries that make up much of this intricate labyrinth of blood vessels critical for delivering oxygenated blood and nutrients to billions of brain cells.

According to Dr. Andy Shih, a principal investigator in the Center for Developmental Biology and Regenerative Medicine at Seattle Children’s Research Institute, understanding how this vast network regulates blood flow in the brain could hold the key to new treatments for neonatal and childhood neurologic conditions, such as stroke and hypoxia, and issues of aging like dementia and Alzheimer’s disease.

“Insufficient blood flow contributes to many of the common neurologic problems seen in children and adults,” he said. “Yet, because we can’t see the capillaries, which measure about 1/10th the thickness of hair, with in vivo clinical imaging techniques, determining how blood travels through this densely packed bed of vessels has remained elusive.”

Wanting to get a closer look, Shih and fellow scientists, Dr. Andree-Anne Berthiaume and Dr. David Hartmann, applied special techniques called two-photon imaging and optogenetics to isolate and study brain capillaries in animal models. Their findings published today in Nature Neuroscience describe the dynamics that govern capillary blood flow in the brain and have broad implications for future avenues of brain research.
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How the OBCC Team Is Stepping Up, and Out, to Help During the Pandemic

Zenashe (pictured on left) and her two children pick up food and other supplies at one of the Seattle Children’s Odessa Brown Children’s Clinic pickup locations in August.

When the economic and social impacts of the coronavirus pandemic began taking root in early spring 2020, the team at Seattle Children’s Odessa Brown Children’s Clinic (OBCC) immediately anticipated the devastation and hardship it would bring.

“From the start, we recognized that the families we serve were being disproportionally negatively impacted by the virus itself, and its effects,” said Arlesia Bailey, senior director of community health and development at OBCC.

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Cancer Research at Seattle Children’s Contributes to FDA Approval of CAR T-Cell Immunotherapy Treatment for Adults with Relapsed or Refractory Large B-Cell Lymphoma

The Therapeutics Cell Manufacturing facility at Building Cure translates laboratory discoveries into real-world treatments.

The U.S. Food and Drug Administration on Feb. 5 approved Bristol Myers Squibb’s Breyanzi, a chimeric antigen receptor (CAR) T-cell therapy used to treat adults with certain types of large B-cell lymphoma who have not responded to or who have relapsed after standard treatments.

The approval was supported by research at Seattle Children’s, including the chimeric antigen receptor (CAR) T-cell product, patient product manufacturing for Juno Therapeutics’ TRANSCEND trial, and data from the Pediatric Leukemia Adoptive Therapy (PLAT-02) clinical trial. In the PLAT-02 clinical trial, 93% of patients with relapsed or refractory acute lymphoblastic leukemia achieved initial remission, and about 50% were still in remission one year after therapy. Read full post »


Baby Battles Fatal Heart Condition and Comes Out Unstoppable

On New Year’s Eve of 2019, Sierra Landman learned she was pregnant with her first child.

“We were so excited,” Landman said. “Then we learned that something wasn’t right with our baby’s heart.”

Nevaeh Landman was born on September 10, 2020 at Madigan Army Medical Center with hypoplastic left heart syndrome and immediately rushed to the Neonatal Intensive Care Unit (NICU), where she would stay for the next several days.

Hypoplastic left heart syndrome (HLHS) is when the left side of the heart is not fully developed. It is a rare and serious birth defect. Babies with HLHS need surgery in the first weeks of life. They will have a series of surgeries to redirect blood flow through their heart.

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Addressing Vaccine Hesitancy: Experts Answer Important COVID-19 Vaccine Questions

In December 2020, the U.S. Food and Drug Administration (FDA) issued Emergency Use Authorizations (EUAs) for COVID-19 vaccines developed by Pfizer-BioNTech and Moderna. This was hailed as a turning point in the COVID-19 pandemic.

Still, many people are hesitant about these new vaccines for a variety of reasons, and the proliferation of misinformation can make it difficult to know what to believe.

On the Pulse spoke with Seattle Children’s experts, Dr. Douglas Diekema, director of education, Treuman Katz Center for Pediatric Bioethics and chair of Children’s Institutional Review Board Committee, and Dr. Douglas Opel, director of Clinical Ethics about vaccine hesitancy. Their answers were honest, compassionate and substantiated by data. Read full post »