Atticus Gwilliam was diagnosed with a brain tumor in August 2016.
September is Childhood Cancer Awareness Month. But What does ‘awareness’ really mean?
To become aware? To obtain new knowledge? To gain a new perspective? To become informed? To become concerned or even empathetic to an unfamiliar situation?
The concept of awareness can take on many faces, and its perception can change depending on the person you talk to. To the mother who spends her days at a children’s hospital, it’s a sense of defeat and desperation about the path that life has taken her. To the father who lost his son, a harrowing and solemn reminder of a fierce battle once fought. To the general social media patron, it may be a month of raw images that they don’t fully understand.
This was the crossroad we found ourselves in as we entered the doors at Seattle Children’s Hospital 12 long months ago. The world of childhood cancer was not something that was on my radar as a mother of three (with one on the way), let alone with regards to one of my own children. Read full post »
The design 9-year-old cancer patient Wyatt Zender created for Kasey Kahne’s No. 5 race car.
In just three days, 9-year-old Wyatt Zender and his family will see his artwork come to life on the Chicagoland Speedway.
Wyatt, a cancer patient at Seattle Children’s, was the lucky winner of a coloring contest presented by Great Clips to design the paint scheme for Kasey Kahne’s No. 5 Great Clips Strong Against Cancer Chevrolet SS, which Kahne will drive at the first playoff race of the NASCAR Cup Series, The Tales of the Turtles 400, on Sept. 17.
“Our family is so excited to see Wyatt’s colorful design speed down the racetrack,” said Wyatt’s mom, Heather Zender. “This has been a great opportunity to give Wyatt the chance to do something fun and share his story as well.”
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This August, my kids and I were among the millions of people watching the solar eclipse with awe. At the apex, in that moment of relative cold and darkness, I tried to lighten the mood with a bad mom joke: “It must be hard for the sun to feel so powerless today, huh?”
But rather than laugh or roll his eyes, my 10-year-old son replied with innocent wisdom.
“Don’t worry, Mom,” he said. “It will pass. All shadows do.”
He’s right. One thing I’ve learned from working with families facing childhood and adolescent cancer is that the shadow of cancer – that loss of control, that fear, that stress – does eventually lift. In fact, the history of human experience includes a myriad of examples of overcoming adversity. Think of the wars, natural disasters and other serious illnesses humans constantly encounter. In general, we recover, and ultimately learn from the experiences.
How do we do it? The answer is “resilience” and it is what I study. Allow me to share some of what I have learned through my conversations with patients and families. Read full post »
Liesel Von Imhof, 18, doing one of her favorite activities – cross-country skiing.
Liesel Von Imhof, 18, came to Seattle Children’s from her home in Anchorage after learning the reason for her migraines: a ping-pong ball–sized tumor in the middle of her brain. In honor of Childhood Cancer Awareness Month, here she shares her journey of diligently working to achieve her goals despite recovering from brain tumor surgery during her senior year of high school.
How long does it take to recover from brain surgery? What does “recovery” really mean? Would I be the same as before, or to what degree would I be different? These were the many questions swirling around in my mind on July 12, 2016, when I sat next to my pale-faced mother in the hospital as we learned I had a brain tumor. I was diagnosed with a Pilocytic Astrocytoma tumor in the third ventricle of my brain.
With this diagnosis, I was soon on a journey of self-discovery to learn just how much grit and determination I really had. Whether I liked it or not, I was going to have to go through two brain surgeries. My life depended on it.
I gripped the thin hospital bed and prepared myself for the ride. Read full post »
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 benefited 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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