Cancer and Blood Disorders

Frankline Onchiri with his daughters (left to right) Nicole and Joey and his wife Everline.

It seems impossible for Dr. Frankline Onchiri to talk about Seattle Children’s without smiling.

When Onchiri joined Seattle Children’s Research Institute as senior biostatistician and epidemiologist in 2015, his role assisting investigators at the Center for Clinical and Translational Research was so much more than a professional dream come true. It also started the next chapter of a personal journey that brought his family from Kenya to Seattle – not once, but twice – and offered him the rare opportunity to work at the hospital responsible for saving his daughter’s life. Read full post »

Physical activity may be one way for teen cancer survivors to reduce their risk of several chronic conditions. A team led by researchers at Seattle Children’s recently tested the practicality of using a Fitbit Flex and Facebook to help encourage physical activity among survivors.

The battle against cancer continues well after remission for many adolescents and young adults. Cancer survivors are at increased risk to develop chronic diseases like obesity, type 2 diabetes, high blood pressure and second cancers.

Physical activity can be an important factor to help lower the risk of developing these conditions while providing an increased quality of life among survivors. However, many studies have shown that cancer survivors maintain a lower level of physical activity than their peers.

A team of researchers led by Dr. Jason Mendoza at Seattle Children’s Center for Child Health, Behavior and Development and Dr. Eric Chow at Seattle Children’s Cancer and Blood Disorders Center recently tested the feasibility of a mobile health intervention aimed at encouraging increased physical activity among teen cancer survivors. The team tapped into wearable fitness technology, the Fitbit Flex, social media and self-determination theory (SDT) to develop an approach that meets teen cancer survivors where they’re at. Read full post »

Russell Wilson walked the runway with three young cancer survivors for a special fashion show benefiting Seattle Children’s Strong Against Cancer.

Last week, the MoPOP in Seattle became a glamorous gateway to fashion and fun that benefitted Seattle Children’s Strong Against Cancer, a national philanthropic initiative with worldwide implications for potentially curing childhood cancers without the harmful affects of chemotherapy or radiation.

In partnership with Alaska Airlines, renowned fashion designer and Seattle Children’s supporter Luly Yang presented a fashion show to unveil her new collection, while generously sharing the runway spotlight with honored guests representing the important cause.

The show was kicked off by three pint-sized models – 4-year-old Greta Oberhofer, 5-year-old Lucy Watters and 7-year-old Mason Nettleton – each a courageous cancer fighter.

Alaska Airlines paired three of their pilots and captains with each of the kids as they individually strutted down the runway in their custom-made ensembles designed by Yang.

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Connor Pearcy, 5, with his family. Born with a tumor that did not respond to traditional therapies, he was enrolled in a clinical trial testing a new cancer drug. After four months of treatment, scans show his tumor is gone.

EDITOR’S UPDATE: The U.S. Food and Drug Administration approved the cancer drug Vitrakvi (previously known as larotrectinib). Vitrakvi is indicated for the treatment of adult and pediatric patients with metastatic or unresectable solid tumors that have a NTRK gene fusion without a known acquired resistance mutation, and have no satisfactory alternative treatments options or whose cancer has progressed following treatment. Read more about this landmark decision. 

Connor Pearcy, 5, was born with a tumor below his knee. A teenage boy developed a cancerous thyroid tumor in his neck. Connor and the teenager have very different tumors, but they are both on the same drug. How is that possible?

A new pediatric cancer trial at Seattle Children’s is testing a drug that targets a specific set of genetic alterations associated with soft tissue tumors in different parts of the body. Connor and the other patients in the trial have tumors that harbor one of the characteristic genetic changes the drug is designed to exploit.

Dr. Katie Albert, pediatric oncologist, and Dr. Doug Hawkins, associate division chief of Hematology and Oncology at Seattle Children’s, are overseeing the trial, which is making precision medicine possible for young cancer patients.

“It’s not easy having a child born with a tumor,” Amy Pearcy, Connor’s mom, said. “I appreciate that Dr. Hawkins never gave up looking for something new to offer, and so far it seems like we have found it.” Read full post »

Elliott Kaczmarek, 3, poses with his mother, Nicole, and father, Jonathan.

This April, in recognition of Donate Life Month, On the Pulse shares the story of how a life-altering diagnosis put one family on a philanthropic journey to help others in need.

When Elliott Kaczmarek was 10 months old he came down with what his parents thought was a stomach bug.

“He wasn’t feeling well, but we didn’t think much of it at first,” said Jonathan Kaczmarek, Elliott’s father.

Just in case, the Kaczmarek’s called Elliott’s pediatrician. Initially, there was no cause for alarm. He had a mild fever and threw up a few times, and so their biggest worry at the time was dehydration.

“After a few days he started getting better,” said Nicole Kaczmarek. “Then his condition changed. He turned green and pale and was lethargic. It was then we knew he needed to go the urgent care.” Read full post »

Rap artist Desiigner and seven-year-old cancer patient Ewan Lill show off their superhero artwork.

On Monday, patients in Seattle Children’s Cancer Unit were given the special opportunity to meet a rap superstar and collect some stylish swag from Love Your Melon, an apparel brand that has given more than 90,000 hats to kids battling cancer and over $2.6 million to support pediatric cancer research.

After wrapping up his Seattle concert the night before, Desiigner, best known for his Billboard chart-topping song “Panda”, made a surprise pit stop to visit kids at Seattle Children’s. During his visit, Desiigner passed out Love Your Melon hats and met with patients, giving impromptu rap performances and creating colorful superheroes.

“It’s a blessing being able to visit these kids,” said Desiigner. “I want to do what I can to make them happy, and working with Love Your Melon is helping me do that.”

Penny Lees, clinical manager of Seattle Children’s Child Life Department, was thrilled when she learned Love Your Melon and Desiigner wanted to spread their generosity to the hospital’s young cancer patients.

“The work that Love Your Melon is doing to help to raise awareness for childhood cancer is incredibly impactful,” said Lees. “Their interest in coming to the hospital to meet the kids who inspire their mission is a wonderful thing to see.”

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The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye. Read full post »

Dr. Todd Cooper, director of the Pediatric Leukemia/Lymphoma Program and Evans Family Endowed Chair in Pediatric Cancer at Seattle Children’s, is leading a new clinical trial for children and adolescents with AML.

Imagine conquering childhood cancer, only to find out that years down the road your heart may fail. Unfortunately, many children who have battled cancer face this reality. While often lifesaving, the effects of chemotherapy treatment (drugs that kill cancer cells) can take a toll on the developing body of a child, potentially resulting in life-threatening late side effects like cardiac damage.

“You go through terrible chemotherapy, achieve remission, have a new lease on life and then your heart fails,” said Dr. Todd Cooper, director of the Pediatric Leukemia/Lymphoma Program and Evans Family Endowed Chair in Pediatric Cancer at Seattle Children’s. “It’s not fair, and we’re determined to change this reality.” Read full post »

Reef, 16 months old, poses for a photo with Richard Sherman.

Blue Tuesday at Seattle Children’s was a little more spirited today thanks to a special visit from the Seattle Seahawks players and members of the Sea Gals. Patients and families were all smiles as they got to meet their favorite football players during the team’s annual Captain’s Blitz visit.

“It was so exciting,” said Joanna Gromadzki. Gromadzki’s 16-month-old son, Reef Gromadzki-Johnson, has been a patient since he was 2 months old after he was diagnosed with pulmonary vein stenosis. “Seattle Children’s is like a second home to us, we’ve been here for so long. Today was special. We’re huge fans of the Seahawks!”

The Seahawks visit really brightened the day for Reef and other 12s in the hospital, and brought holiday cheer to some young and loyal fans. Read full post »

Skyler, 17, poses with a sock puppet he designed.

When Skyler Hamilton was born, his mother called him her miracle baby. He was perfect.

It wasn’t until he turned 7 years old when the family noticed something wasn’t quite right. What started as a limp quickly progressed into something unimaginable.

Three months later, Skyler was diagnosed with a rare and aggressive brain tumor, medulloblastoma.

On August 13, 2006, Skyler was admitted to Seattle Children’s. Four days later, he had surgery to have the tumor removed.

“His tumor was so advanced,” said Margaret Hamilton, Skyler’s mom. “It was the worst nightmare you could imagine.” Read full post »