Cancer and Blood Disorders

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.”

Read full post »

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 »

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 »

Dr. Rebecca Gardner, oncologist and lead investigator for Seattle Children’s PLAT-02 trial.

T-cell immunotherapy continues to take center stage as one of the most promising new cancer therapies of our time. After receiving the therapy, which reprograms a person’s own T cells to detect and destroy cancer, 93% of children with acute lymphoblastic leukemia (ALL) who enrolled in Seattle Children’s Pediatric Leukemia Adoptive Therapy (PLAT-02) trial and were unlikely to survive, achieved complete remission. Some are still in remission now more than two years out from the therapy.

This is a message that Dr. Rebecca Gardner, oncologist and lead investigator for the PLAT-02 trial at Seattle Children’s, will be underscoring in her abstract presentations at The American Society of Hematology (ASH) Annual Meeting. However, she will also highlight that there is still work to be done, and will present a possible answer to one of the most challenging puzzles facing researchers in the field: How can we limit the possible side effects of the treatment while retaining the effectiveness of the T cells?

“We are in a pivotal time where we know this therapy works in getting patients who are very sick into remission, but now we’re focusing on how to improve the treatment experience, which includes limiting the possible side effects,” said Gardner. “Our latest results mark an exciting milestone where we have potentially found the key to better controlling the body’s reaction to the T cells while still ensuring efficacy.” Read full post »

Greta Oberhofer’s leukemia is in remission thanks to T-cell immunotherapy developed at Seattle Children’s.

Greta Oberhofer survived a bone marrow transplant for leukemia when she was just 8 months old — but the side effects nearly killed her. Then, six months later, her family’s worst fears came to life.

“My husband put the doctor on speaker phone — he told me Greta relapsed and that her prognosis was bad,” remembers her mother, Maggie Oberhofer. “She had already suffered so much with the chemotherapy and transplant, and we didn’t want to put her through that again. We didn’t know what to do.”

The Oberhofers — who live in Portland — were considering hospice for Greta. Then they heard that Seattle Children’s Dr. Rebecca Gardner was testing a therapy that uses reprogrammed immune cells to attack certain kinds of leukemia.

“Dr. Gardner said not to give up because her therapy was putting kids like Greta in remission, and that the side effects were often a lot easier to tolerate,” Oberhofer says. “We suddenly had a way forward.”

A few months later, the Oberhofers watched Greta’s reprogrammed cells drip into her body. Two weeks after that, her cancer was in remission.

Read full post »

Hunter Coffman, 2, with his family.

In December of last year, Laura Coffman began to notice that something wasn’t quite right with her 2-year-old son, Hunter. He was leaning to one side and seemed to lose his balance easily. When he became lethargic and started vomiting a few days later on Dec. 28, she knew it was time to see the pediatrician.

After all standard tests came back normal, they were sent to Seattle Children’s for further testing and to find an answer. Unfortunately, it was far worse than anything Coffman could have imagined.

“What I thought was probably just Hunter being a wobbly toddler with a virus turned out to be a brain tumor,” said Coffman. “I will never forget that day. It was the most traumatic six hours of our lives.” Read full post »

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 »