Cancer and Blood Disorders

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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Madeline Boese, with her mom Terri, cancer-free after a 12-year battle with acute lymphoblastic leukemia.

When Madeline Boese was 14, she had visions of pointe shoes, tutus and sugar plums dancing in her head. She dreamed of becoming a professional ballerina, and hoped for a future in the spotlight doing what she loved.

Unfortunately, her body had different plans.

One day in ballet class in December 2006, she noticed an odd golf ball-sized lump on her left thigh below her pink tights. Her mom, Terri Boese, said a trip to their doctor in their hometown of Plano, Texas, led to a bone-chilling discovery.

“I was terrified when I heard ‘malignancy detected,’” Boese said. “It was awful and so out of the blue. I felt like I was going to hyperventilate, and it took all I had to hold myself together.”

Madeline was immediately referred to a hospital in Dallas where she was diagnosed with acute lymphoblastic leukemia (ALL). From there, Boese said everything moved rapidly as Madeline began what would be two and a half years of grueling chemotherapy treatment.

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There was one thing that was brighter than 8-year-old Jana Staudenraus’ coral ski jacket and orange helmet as she flew down the mountain at Stevens Pass this weekend on a sit ski: her big smile. As she came to a stop at the bottom of the slope, her family was there cheering, celebrating the first time Jana had ever skied. The exuberant little girl couldn’t wait to do another run. “I want to go again,” she exclaimed. “I want to go fast.”

Another lap down, with her ski instructor tethered behind her, Jana was beaming with joy.

“Did you see me?” Jana asked her mom.

“Yes. You are doing such a great job,” her mother replied.

“I fell once,” Jana said frowning slightly.

“Yes,” her mother said sympathetically. “But just like in life, what do we do when we fall?” she asked warmly. Read full post »

Miguel Navarro is finally getting back to doing what he loves most: driving.

“Driving has always been an escape for me,” said Miguel. “It’s where I feel most at home. When you’re driving, you forget everything else around you.”

Miguel’s family and care team supported him in the grandstands of the speedway. They each adorned a shirt that said, “Miguel’s Pit Crew.”

When he was first diagnosed with cancer, Miguel was told he may never be able to drive again. It was a reality he couldn’t comprehend or accept.

“I knew I’d drive again,” said Miguel. “I always knew I’d get through this.”

He promised himself he’d get behind the wheel again, and recently, he realized that dream in a special way, thanks to Seattle Children’s.

In the grandstands of Pacific Raceways, Miguel’s family, along with his care team, beamed with pride at the sight of Miguel zooming around the race track. Adorning t-shirts that read, “Miguel’s Pit Crew,” they cheered him on. Read full post »

Danica Taylor, 3, has undergone treatment at Seattle Children’s for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT.

Recalling the treatments her daughter has had over the past year for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT, Audrey Taylor says it’s like watching a game where your favorite sports team keeps losing and then regaining the lead.

“There are so many times when you feel like you totally got this, followed by moments where you’re not really sure what’s going to happen next,” she said.

Diagnosed with ATRT at 21 months old, Danica Taylor, now 3, has endured multiple rounds of chemotherapy, stem cell transplants, two brain surgeries, laser ablation and proton beam radiation therapy to try to stop the fast-growing tumor.

Danica remained strong through it all.

“She’s just the bravest and toughest kid I know,” Taylor said. “Whenever I have to do something hard, I summon my inner Danica.” Read full post »

Dr. Rebekah Fenton (left) and her sister Elisabeth Lucien stay upbeat as they wait to hear whether Fenton is a donor match.

At the age of 17, Dr. Rebekah Fenton’s sister, Elisabeth Lucien, was diagnosed with Hodgkin Lymphoma. It rocked her family’s world. When Elisabeth relapsed and faced a second bone marrow transplant, Fenton, now a third-year resident at Seattle Children’s, gave her sister more than just emotional support. Below, Fenton shares her experience as a bone marrow donor.

“If you have to get cancer, this is the one to get.”

That’s what the oncologist said when he told us my sister Elisabeth had Hodgkin Lymphoma.

Stunned by the diagnosis, my parents teared up. My brother Michael and I huddled next to Elisabeth in the hospital bed and bawled. Elisabeth was stoic. She was 17.

We were told that the five-year survival rate is 90%, and we believed those odds, combined with our faith, would help Elisabeth (and us) persevere. Read full post »

Ruth Garcia, 17, received treatment from Seattle Children’s for her melanoma.

During seventh-grade gym class, Ruth Garcia remembers a friend pointing out a black mole she had on her left knee. Ruth didn’t think much about it until two years ago, when she began to feel pain in her knee and noticed that the mole had grown and changed colors to gray and red.

“That’s when I started to worry more,” said Ruth, now 17.

In spring 2016, Ruth’s mother took her to see her primary care provider near the family’s home in Walla Walla, Washington. They did a biopsy on the mole, and she was diagnosed with spitzoid melanoma. Ruth was referred to Seattle Children’s Cancer and Blood Disorders Center.

A child born in the U.S. has about a one in 40 chance of developing melanoma during their lifetime. Seattle Children’s sees about six children a year who were either misclassified with melanoma or have spitzoid melanoma. The cause of spitzoid melanoma is unknown.

“I was surprised,” said Ruth. “I never thought something like that would happen to me.” Read full post »

Harper Beare was diagnosed with acute lymphoblastic leukemia when she was just 10 months old. After she wasn’t able to achieve remission through conventional treatment, she traveled to Seattle Children’s to participate in the PLAT-05 T-cell immunotherapy trial. Soon after, Harper was in remission.

Seattle Children’s doctors and researchers continue to believe chimeric antigen receptor (CAR) T-cell immunotherapy has the power to revolutionize pediatric cancer care. Over the past year, they have made tremendous progress with the promising therapy, which has given patients like Harper Beare, Erin Cross and Milton Wright a second chance at life.

Seattle Children’s recently enrolled its 200th immunotherapy patient, and now has nine T-cell therapy trials targeting childhood cancers from leukemia to solid tumors, which is one of the most robust pipelines in the country.

Seattle Children’s researchers are continuously discovering new best practices based on their experience in the trials, and as a result, will share six abstracts this weekend at the American Society of Hematology (ASH) Annual Meeting in San Diego.

“It’s amazing to be at a place in our research where we’re learning from our existing trials, and immediately incorporating that vital intel into our new trials,” said Dr. Rebecca Gardner, oncologist at Seattle Children’s and principal investigator for the PLAT-02 and PLAT-05 CAR T-cell immunotherapy trials. “We are also pleased to now offer several new trials to patients who would otherwise be out of treatment options. Our goal is to offer the best therapy possible, and to never let any patient reach the end of the line.”

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At age 2, Erin Cross was diagnosed with acute lymphoblastic leukemia. She achieved remission through her initial cancer treatments, but relapsed in 2016. Out of treatment options, her family found hope in Seattle Children’s PLAT-02 T-cell immunotherapy clinical trial. Erin, now 8, just celebrated her two-year anniversary of being cancer-free. Photo by Jane Mann

Each morning, 8-year-old Erin Cross springs out of bed excited to go to school. A third grader in Chester, England, she loves science and math, and imagines a future as a researcher making “potions” in a lab. She loves cracking jokes, rugby and playing make-believe games with her friends on the playground. For Erin, who spent most of her life in the hospital and away from others her age, she cherishes each day she is able to just be a kid.

“It’s amazing to see Erin back to living a normal life,” said her mother, Sarah Cross. “We’re so thankful that we’re able to enjoy time as a family doing regular things like taking picnics, playing on the beach or going to the zoo. It’s time that we never take for granted.”

Nearly three years ago, Cross faced the devastating reality that she may never see her daughter grow up. At age 2, Erin was diagnosed with acute lymphoblastic leukemia (ALL). She was able to achieve remission through her initial cancer treatments, but in 2016, her family received the shattering news that she had relapsed and was out of treatment options.

That was, until they found hope in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) chimeric antigen receptor (CAR) T-cell immunotherapy clinical trial for children and young adults with relapsed or refractory ALL who are not likely to survive with current treatments. In July 2016, Erin’s family arrived in Seattle for the trial.

“Seattle Children’s threw us a lifeline,” said Cross. “We knew we had to get her there. We moved mountains to save our daughter’s life.”

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Avery Berg, 13, was diagnosed with a rare brain tumor at the age of 10. She endured six weeks of radiation, five brain surgeries, and six months of high-dose chemotherapy. Avery has been cancer-free for more than a year, but her mom Kristie says that cancer immunotherapy offers hope that other children can become cancer-free without having to endure such harsh therapies.

T-cell immunotherapy continues to take center stage as one of the most promising new cancer therapies of our time. What once sounded like a dream – reprogramming a person’s own immune system to fight cancer – is remarkably becoming a reality. What’s more; doctors and researchers in our own backyard are leading the way in developing this therapy for children and young adults around the world.

From covering the opening of the first T-cell immunotherapy trial when I was an anchor at KING 5 TV, to now seeing this therapy being tested in seven open clinical trials at Seattle Children’s and applied to a variety of cancers, I’ve been amazed to watch the enormous strides researchers have made in the field over a few short years.

The results also speak for themselves – 93% of patients with relapsed or refractory acute lymphoblastic leukemia in Seattle Children’s phase 1 PLAT-02 trial achieved complete initial remission. About 50% were still in remission one year after therapy. Some patients, who were otherwise unlikely to survive with traditional therapies, are still in remission nearly five years after receiving the experimental treatment. This is encouraging news, especially since leukemias are the most common childhood cancers.

And on Oct. 12, I will witness yet another major milestone – Seattle Children’s will bring their groundbreaking therapies to a global stage. Read full post »