Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.
In August of 2009, when Katie Belle was just 3 1/2 years old, a persistent fever led her to Seattle Children’s Emergency Department where doctors discovered a baseball-sized tumor in her abdomen. She was diagnosed with high-risk neuroblastoma, a cancer that starts in immature nerve cells and develops into tumors. Her chance of survival: 35%.
“I felt like someone stuck a dagger in my stomach,” said Katie’s mother, Jennifer Belle. “I couldn’t breathe. However, I had to put on a brave face for Katie.”
For children with high-risk neuroblastoma, which according to the National Cancer Institute occurs in approximately one out of 100,000 children, Katie’s prognosis was not uncommon. On average, less than 50% of children with this disease live five or more years after diagnosis.
However, a Phase 3 trial performed by the Children’s Oncology Group (COG), and led by Seattle Children’s oncologist Dr. Julie Park, has found that adding a second autologous stem-cell transplant, which is a transplant that uses the patient’s own stem cells, to standard therapy improves outcomes for patients with high-risk neuroblastoma. Read full post »
“As a parent, you never want to hear that your child has cancer,” said Paul Esposito, of Plano, Texas. “It creates an emotion that starts at your feet and takes hold. It’s devastating.”
This was the terrible news Paul and his family received in 2010 when his son, Zane Esposito, was only 7 years old. Zane, now 12, was diagnosed with acute lymphoblastic leukemia (ALL) in June 2010. Zane underwent three grueling years of cancer treatment, including 365 days of chemotherapy, before reaching remission. Two years later, Zane relapsed in January of this year. Their only option: another three years of aggressive chemotherapy.
“I really don’t like chemo, it’s the worst,” said Zane. “My back hurt super bad due to tiny fractures from the chemo. I couldn’t even bend over to tie my shoes. And here I was having to start another three years all over again.”
Not only was the thought of starting over daunting, but Zane faced a major hurdle as he began chemotherapy – his cancer was not responding to the treatment. He had refractory ALL. Zane and his family were desperate for another treatment option.
About 2,000 miles away in Seattle, Wash., they would find that other option. But first, they would learn about it in the most unlikely place: a doughnut shop. Read full post »
Child Life specialist Amie Lusk blows some distracting bubbles for patient Christian Lybbert on a difficult day while his sister, Izabella, watches.
Amie Lusk couldn’t have known it at the time, but she started on her career path the day she got caught sleeping in the book nook of her fourth grade classroom.
For weeks, she had been hiding her fatigue and sneaking naps in the nook. But that day a classmate found her, woke her up and marched her to the school nurse, who sent her home with a fever.
Lusk’s doctor ordered a blood test, and her mom got an alarming message when the results came in: “Take Amie to the Hematology/Oncology Clinic at Seattle Children’s.”
On March 26, 1992, Lusk, then 10, was diagnosed with acute lymphoblastic leukemia (ALL). After two years of treatment at Seattle Children’s and a complete recovery, she had two important pieces of self-knowledge: First, she was resilient — if she could bounce back from cancer, she could stare down all manner of other challenges. Second, she wanted to work at Seattle Children’s when she grew up.
“For some people, cancer is the worst thing in the world — it’s horrible and even life-ending,” she said. “For me, it shaped the course of my life.” Read full post »
Like many kids, 6-year-old Alexis has big dreams. But while some kids dream about defying gravity as an astronaut, or being the star ballerina in the Nutcracker, Alexis dreams of helping other kids like her and raising awareness of pediatric cancer by sharing her story. And for Alexis, there is no better way to reach other kids than with a cartoon that illustrates her journey.
Thanks to Make-A-Wish Alaska and Washington, this past weekend her dream came true. Alexis received the red carpet treatment at the world premiere of her very own cartoon at Cinerama in downtown Seattle. She was the star of the night as her friends, family and many others gathered to watch Princess Alexis slay the mighty dragon, a ferocious symbol that represented her fight with leukemia.
“It was incredible to see her wish come true and we’re just so grateful,” said Alexis’ mom, Angela. “Alexis was all smiles the entire night and felt like a real star who was making a difference. We’ve always known her to be a very brave little girl and now others who don’t know her can see it too.” Read full post »
Patients and families celebrated Halloween a little early this year thanks to Spirit of Children, the charitable arm of Spirit Halloween. Spirit of Children hosted a Halloween party for patients and families complete with costumes of all shapes and sizes, a visit from Donnie and Leo from Nickelodeon’s Teenage Mutant Ninja Turtles and a plethora of Halloween decorations for the kids to enjoy.
For some patients, this party was a welcomed bright spot in their hospital stay. For others, this day marked a milestone that will never be forgotten.
Celebrating Halloween from the hospital
Ciaran Grandi, 7, thought he’d have to miss out on Halloween this year. He’s been away from his home in Eastern Washington for almost a year receiving treatment for acute lymphocytic leukemia (ALL).
When Anna Foley, Ciaran’s mother, heard about the party she hoped her son would get a chance to join in the festivities. She crossed her fingers and had a quick chat with their nurse. They were given the green light. Read full post »
Every year around March, Keith Stocker starts thinking about what he’s going to do with his next corn maze. The Snohomish, Wash., farmer and president of Stocker Farms has created many works of art with his crop, including a rendition of the Boeing 787 Dreamliner and a nod to endangered animals at the Woodland Park Zoo. He was still looking for inspiration this year when he boarded an Alaska Airlines plane and picked up the in-flight magazine, Alaska Beyond.
“I started reading an article about Strong Against Cancer, (Seattle Seahawks quarterback) Russell Wilson and the research that’s being done at Seattle Children’s Hospital,” Stocker said. “I didn’t realize until I read that article how important this research is and what it’s doing for kids who are fighting for their lives, as well as their families. It spoke to me. I knew right then that this is what I needed to do for my next design.”
Dr. Abby Rosenberg, medical leader of Seattle Children’s Adolescent and Young Adult Cancer Program
Sometimes I hesitate to tell people what I do for a living. This isn’t because I don’t love what I do (I do), but because the idea of kids with cancer seems to make people uncomfortable. Perhaps this is because they think of their own children and feel that urgent need to protect them, coupled with sudden gratitude that their own kids are healthy. Perhaps they think of the heartstring-pulling commercials featuring cute, bald children. Or, maybe they think of melodramatic movies where the patients with cancer always die. Perhaps they relive their own experiences involving older adults, friends or family members who suffered from cancer.
Regardless of their reasoning, the expectation seems to be that pediatric cancer must be sad. And sometimes, it is. But there’s also a lot of hope. So, in honor of Childhood Cancer Awareness Month, I thought I would take this opportunity to share what I think of kids with cancer below. Read full post »
Art therapist Rosalie Frankel with 11-year-old patient Jaylin Israel-Tompson after completing an art therapy session
Twelve-year-old Selphie Luann Enderle has been in and out of Seattle Children’s Hospital since she was 3 years old for treatment of cystic fibrosis. While the long hospital stays can be difficult, there is one activity that she always looks forward to – her art therapy sessions. The joy these sessions bring her is evident by her reaction to the sight of art therapist Helena Hillinga Haas approaching her hospital room with a colorful cart in tow, overflowing with markers, crayons and construction paper.
“You’re here!” she exclaims as she jumps out of bed, throwing her hands in the air and running to the door. “I’ve been waiting.”
Selphie is one the many patients at Seattle Children’s who benefit from the unique therapy that compliments traditional medicine by providing patients with a creative outlet to express themselves, process emotions and reconnect to the playfulness of childhood. As art therapists, Hillinga Haas and Rosalie Frankel are trained to develop patient’s art skills while also focusing on their emotional needs.
“We work to address the mind-body connection and aid in the healing process by helping our patients relax and express their emotions in an enjoyable way,” said Frankel, who began the art therapy program at Seattle Children’s 15 years ago. “Our goal is always to help our patients find moments of comfort by providing them with this cathartic outlet that also often serves as a welcomed distraction.” Read full post »
Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.
Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.
A new study published today in Cancerand led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma. Read full post »
Development of the human papillomavirus (HPV) vaccine has been touted as one of the greatest victories in cancer prevention, and yet, only a minority of adolescents in Washington state have received all three recommended doses of the vaccine. Less than half of girls complete the vaccine and only 13% of boys do.
“We know nearly 80% of Americans are infected with HPV and that this virus can cause several types of cancer, including cervical cancer,” said Dr. Rachel Katzenellenbogen, an adolescent medicine expert at Seattle Children’s and an investigator in Seattle Children’s Research Institute’s Center for Global Infectious Disease Research. “And still, too few are getting this life-saving vaccine.”
To raise awareness of this public health concern, Seattle Children’s will show the documentary film “Someone You Love” in the hospital’s Wright Auditorium on April 24. The film shares the stories of five women who have been affected by HPV. Each of them, and their families, must cope with the misconceptions, stigma and shame associated with the sexually transmitted virus. Read full post »
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.