Cancer and Blood Disorders

Seattle Children’s will embark on a groundbreaking clinical trial that will potentially transform treatment methods for children with relapsed acute pediatric leukemia.

In collaboration with The Leukemia & Lymphoma Society (LLS), Dr. Todd Cooper, an oncologist and director of the Seattle Children’s High-Risk Leukemia Program, is part of a team leading the effort to launch a global precision medicine master clinical trial called the LLS Pediatric Acute Leukemia (PedAL) Initiative. The goal of the trial, which is part of The LLS Children’s Initiative: Cures and Care for Children, is to test multiple targeted therapies simultaneously at up to 200 clinical sites, including Seattle Children’s, worldwide.

Cooper, the Clinical Trial Lead, will oversee the master screening trial where children with newly diagnosed and relapsed acute leukemia can choose to have their clinical and biologic information included in an international database. This database will serve many purposes, including helping to determine an individual child’s eligibility for a number of targeted clinical trials. The data will also be used to uncover new targets for therapy and as a rich source for groundbreaking discoveries.

On the Pulse sat down with Cooper to discuss the specifics of the trial and how it will possibly revolutionize the types of cancer treatments available for children.

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Grace Blanchard was just three weeks away from graduating from college when she began feeling like something was off.

“It started with my handwriting,” Blanchard said. “I had always felt like I had good handwriting, so it was strange that it all of a sudden became messy, slanted and unreadable.”

Then there was the slurred speech and dizziness.

“At first I thought I had vertigo,” she said, “so I decided to see a neurologist to get an MRI.”

Once the results of the MRI scan were in, Blanchard received a call.

“They asked me to come into the clinic as quickly as possible, and that I should bring support,” she said. “They knew that after hearing, ‘you have a brain tumor the size of a golf ball on your cerebellum,’ I wouldn’t be able to listen to anything else.”

The following day, Blanchard flew from California, where she had been going to school, to Seattle, her hometown, for surgery to remove the tumor.

“I decided Seattle would be the best option, not only because I wanted to be with my family,” she said, “but also because of the fact that Seattle has the best hospitals for cancer treatment.”

Within 24 hours of flying into Seattle, Blanchard went to Seattle Children’s to get her tumor surgically removed.

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Credit: E. Dubois Photography

Tatum Fettig remembers when her family’s lives changed forever. In 2016, her daughter Teagan began vomiting and struggling with balance. At Seattle Children’s, Teagan, then 2, was diagnosed with a pediatric brain tumor, medulloblastoma. Through the grueling process of chemotherapy treatment and radiation, Fettig and her husband were by Teagan’s side, trying to cope with the uncertainty of whether they would see their youngest child grow up. They mourned the loss of their former life.

“Having a child with cancer is traumatizing,” Fettig said. “It doesn’t mean you’re broken, but it affects the whole family. People tell parents to take care of themselves, but when your kid is sick, you can’t think of anything else.”

Fettig’s experience is not uncommon. Research shows that parents of children with cancer experience psychological stress during the child’s treatment. After treatment is complete, parents report higher anxiety, depression and posttraumatic stress than the average population. However, formal mental, emotional and social support for parents is not typical after a child’s cancer diagnosis.

In a study published in JAMA Network Open, Seattle Children’s researchers addressed this need, adapting an intervention previously used for teens and young adults with cancer. They found that one-on-one sessions teaching skills through a tool called Promoting Resilience in Stress Management for Parents (PRISM-P) improved resilience and benefit finding, or personal growth, among parents of children with cancer. Read full post »

Henry with his sister, Alice, at Remingler Farms, enjoying a train ride.

In recognition of Childhood Cancer Awareness Month, Louisa Cranston shares her experience caring for her 3-year-old son, Henry, who was recently diagnosed with cancer.

My husband Robert and I are both Seattle natives. We met and began dating 10 years ago now, and will have been married for five years this October. Our son Henry was born in 2015, and his sister Alice followed in 2017.

Henry was and in most ways still is a very typical toddler. He loves playing outside, watching cartoons, and spending quality time with his people. He is an eager helper in the kitchen and anything he can do by himself, he wants to do by himself. Often when we are together, he echoes the words of his hero Daniel Tiger: “Mommy, I like to be with my family!”

When Henry arrived in our lives and made me a mother, I experienced a whole new set of emotions for the first time. I now understood the depth of the love my own parents felt, the glowing pride, and above all, the worry. The sleepless nights waiting for me to come home made sense. The lectures on safety and responsibility made sense. Because from now on and forever, I was only okay if Henry was okay.

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In recognition of Childhood Cancer Awareness Month, On the Pulse is sharing a powerful poem written by Avery Berg. Diagnosed with a rare and aggressive brain tumor when she was 10 years old, Avery knows all too well about the realities of the insidious disease, but she’s also hopeful for the future – a world without cancer.

Today, Avery is 14 years old. She just started high school, and she has no sign of disease.

Her family’s fight is not over though. They are champions for a brighter future for children like Avery – for hope, care and cures.

Avery, a patient ambassador for It Starts With Yes: The Campaign for Seattle Children’s, read the below poem in front of 1,700 people at T-Mobile Park on Aug. 18. The event, hosted by the Friends of Costco Guild, raised a record $10.4 million for uncompensated care at Seattle Children’s. Read full post »

For 7-year-old Lucy Watters, her mother, Nicole Watters, and their family, Seattle Children’s is like a second home. They are at the hospital often, and their care team has become like an extension of their family. Compared to their usual visits, their current stay, 23 days in the Cancer Care Unit, doesn’t seem that long.

“As hard as it is to be here, we know we’re in good hands. We have family within the hospital walls,” said Watters. “When we walked in that first day, Lucy was smiling, like she was going on vacation.”

It breaks Watters’ heart, but also gives her relief.

In the beginning of June, their family received devastating news. Lucy relapsed again, for the fourth time. Lucy was first diagnosed with acute lymphoblastic leukemia at 3 years old. Since then, for nearly half her life, she’s been in and out of the hospital for treatment.

“She doesn’t remember life before cancer,” Watters said.

Through everything, they hold onto hope, and live by a simple motto.

“Stay in today,” Watters said. “We take it one day at a time and live in the moment.”

Thursday was a good day, filled with so many special moments. They got to go home and received a special send-off from one of Lucy’s biggest fans, Alysha Clark of the Seattle Storm. Read full post »

Last week, 18-year-old Michael Albrecht walked down the hall of Seattle Children’s Cancer Care Unit in his purple cap and gown. His tassel and honor cords swaying as he walked with his IV pole by his side. He couldn’t attend his high school graduation because was undergoing cancer treatment, and so his care team put on a special graduation just for him at Seattle Children’s. It wasn’t how he envisioned his graduation, but as he always does, he looked on the bright side of things. He had made it.

He posed for photos, high-fived his nurses and doctors and received a mock diploma his child life specialist created for him. It wasn’t the real thing, but the experience was close enough to bring a smile to Michael’s face. The simple ceremony wasn’t the only thing his care team had planned though. They had more in store to celebrate such a monumental milestone. Read full post »

Update – February 27, 2020: It is our pleasure to share that the individual featured in this story now uses she/her pronouns and goes by the name Iris. She continues to be seen at Seattle Children’s Gender Clinic and advocate for gender affirming healthcare.

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In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.

From as early as Torin could remember, they used writing as a way of expressing emotion.

“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”

Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.

Each individual should have the power to create their own story and be true to themself.

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Today, U.S. News & World Report named Seattle Children’s to its Honor Roll of the 10 best children’s hospitals in the nation.

The annual survey ranks hospitals on outcomes and quality-related information, including success in managing patients, commitment to best practices, nurse staffing ratios, safety, and availability of specialty care. Rankings also factor in each specialty’s reputation, as assessed by specialists at other institutions around the country.

For 2019, Seattle Children’s is ranked #10 out of nearly 200 pediatric hospitals that were evaluated. U.S. News & World Report ranks pediatric hospitals in 10 specialty areas. In every one, Seattle Children’s ranked in the top 20, and several ranked in the top 10:

• Nephrology: #8
• Diabetes and Endocrinology: #10
• Neurology and Neurosurgery: #10
• Cancer: #11
• Pulmonary: #12
• Neonatology: #14
• Urology: #15
• Cardiology and Heart Surgery: #16
• Orthopedics: #17
• Gastroenterology and GI Surgery: #18

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Jay Jones, wife Kara, and their daughter Hunter Rose enjoying time at home in 2018 in between chemo treatments.

Dads are expected to instinctively be strong like a bull, right? That means stepping up to the plate and handling any situation that arises with ease. However, it is much more difficult to keep up this facade in times of tremendous stress, like learning your daughter has a life-threatening disease. The problem for me was that it was impossible to live up to the kind of “strong” I was telling myself I needed to be.

Up until my daughter’s stage four high-risk neuroblastoma diagnosis in 2017, I believed in the stereotypical definition of strong. Yet at the end of that first day, I realized my definition of strong was off a bit.

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