Cancer and Blood Disorders

In many ways, my role as a father did not change after my 17-month old son, Isaac, was diagnosed with cancer.

Everyone faces adversity in their lives. Did I think ours would be this? Heck no. Did I want it to be this? This is the last thing I wanted. Take me before you take him, I thought.

But the severity of our situation hasn’t changed the lessons I teach my sons: In situations of extreme stress, maintain your demeanor and learn how to process and handle that stress; Be kind to people in the midst of adversity; Treat people the way you want to be treated; Be respectful.

And, never give up.

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Fuller Goldsmith, 16, has always dreamed of being a top chef.

After winning the Food Network’s Chopped Jr. reality TV cooking competition, Fuller Goldsmith, 16, was well on his way to achieving his dreams of becoming a professional chef. It was a future that was soon in jeopardy when life for the aspiring chef took an uncertain, but all too familiar turn. In late 2018, Fuller learned his cancer had returned for a fourth time.

Having undergone treatment for acute lymphoblastic leukemia (ALL) since age 3, Fuller was out of standard treatment options. Their local oncologist told the Goldsmiths about the cancer immunotherapy clinical trials at Seattle Children’s. He thought the experimental chimeric antigen receptor (CAR) T-cell immunotherapy, which engineers a patient’s own immune cells to target and eliminate cancer cells, might offer the best hope for Fuller. Read full post »

Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.

Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.

For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.

To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »

Taylor Tran (left) and her mother Mai Nguyen. Taylor underwent cancer treatment when she was 2 years old, causing her to go into early menopause when she was just 16.

“You pay the price for having cancer over and over again.”

Mai Nguyen’s words are loaded with sorrow as she speaks about her 17-year-old daughter, Taylor Tran, who is dealing with fertility concerns more than a decade after she survived late-stage cancer.

It’s easy to understand the exasperation Nguyen feels: Her daughter was diagnosed with stage 3 single-cell sarcoma of the kidney when she was 2 years old and was treated with intense chemotherapy and radiation. Now, the treatments that saved her life have put her into early menopause.

“It’s been traumatic,” Nguyen said. “We’ve tried so hard to allow Taylor to have a normal childhood and this feels like one more thing cancer has taken from her.”

Stories like Taylor’s inspired Seattle Children’s urologist Dr. Margarett Shnorhavorian to tackle a challenging area of research that was largely uncharted more than a decade ago. Since then, she’s helped change perspectives and protocols for fertility preservation in childhood cancer survivors. Read full post »

From the first time Daisy Martinez heard the thumping of her baby’s heartbeat, she was in love. She always wanted to be a mother and hoped for a baby girl. She even had a name picked out: Aliyanna.

When doctors confirmed Martinez was having a baby girl, she was elated. Unfortunately, her joy was short-lived. During an ultrasound 25 weeks into her pregnancy, the ultrasound technician noticed something amiss. A large lump was growing on Aliyanna’s spine. Read full post »

Madeline Boese was one of the patients in Seattle Children’s PLAT-03 trial.

Chimeric antigen receptor (CAR) T-cell immunotherapy, which reprograms a child’s white blood cells so they can seek out and destroy cancer cells, is making a difference in children’s lives. Currently, Seattle Children’s has multiple trials open that could benefit children and young adults with relapsed or refractory cancers. In October, Seattle Children’s opened a new pediatric research facility, Building Cure, to accelerate discoveries such as immunotherapy.

Seattle Children’s researchers are continuing to realize the promise of CAR T-cell immunotherapy and improve outcomes in difficult to treat pediatric cancers. They are applying knowledge gained from ongoing clinical trials to study effects on the youngest patients, develop new interventions to prevent side effects and boost T-cell persistence, and to better understand resistance to therapy.

Research recently published in major scientific journals and presented at the 2019 American Society of Hematology (ASH) Annual Meeting contributes new insight guiding the evolution of the experimental therapy. Here, On the Pulse summarizes their findings. Read full post »

Seattle Children’s will embark on a groundbreaking clinical trial that will potentially transform treatment methods for children with relapsed acute pediatric leukemia.

In collaboration with The Leukemia & Lymphoma Society (LLS), Dr. Todd Cooper, an oncologist and director of the Seattle Children’s High-Risk Leukemia Program, is part of a team leading the effort to launch a global precision medicine master clinical trial called the LLS Pediatric Acute Leukemia (PedAL) Initiative. The goal of the trial, which is part of The LLS Children’s Initiative: Cures and Care for Children, is to test multiple targeted therapies simultaneously at up to 200 clinical sites, including Seattle Children’s, worldwide.

Cooper, the Clinical Trial Lead, will oversee the master screening trial where children with newly diagnosed and relapsed acute leukemia can choose to have their clinical and biologic information included in an international database. This database will serve many purposes, including helping to determine an individual child’s eligibility for a number of targeted clinical trials. The data will also be used to uncover new targets for therapy and as a rich source for groundbreaking discoveries.

On the Pulse sat down with Cooper to discuss the specifics of the trial and how it will possibly revolutionize the types of cancer treatments available for children.

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Grace Blanchard was just three weeks away from graduating from college when she began feeling like something was off.

“It started with my handwriting,” Blanchard said. “I had always felt like I had good handwriting, so it was strange that it all of a sudden became messy, slanted and unreadable.”

Then there was the slurred speech and dizziness.

“At first I thought I had vertigo,” she said, “so I decided to see a neurologist to get an MRI.”

Once the results of the MRI scan were in, Blanchard received a call.

“They asked me to come into the clinic as quickly as possible, and that I should bring support,” she said. “They knew that after hearing, ‘you have a brain tumor the size of a golf ball on your cerebellum,’ I wouldn’t be able to listen to anything else.”

The following day, Blanchard flew from California, where she had been going to school, to Seattle, her hometown, for surgery to remove the tumor.

“I decided Seattle would be the best option, not only because I wanted to be with my family,” she said, “but also because of the fact that Seattle has the best hospitals for cancer treatment.”

Within 24 hours of flying into Seattle, Blanchard went to Seattle Children’s to get her tumor surgically removed.

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Credit: E. Dubois Photography

Tatum Fettig remembers when her family’s lives changed forever. In 2016, her daughter Teagan began vomiting and struggling with balance. At Seattle Children’s, Teagan, then 2, was diagnosed with a pediatric brain tumor, medulloblastoma. Through the grueling process of chemotherapy treatment and radiation, Fettig and her husband were by Teagan’s side, trying to cope with the uncertainty of whether they would see their youngest child grow up. They mourned the loss of their former life.

“Having a child with cancer is traumatizing,” Fettig said. “It doesn’t mean you’re broken, but it affects the whole family. People tell parents to take care of themselves, but when your kid is sick, you can’t think of anything else.”

Fettig’s experience is not uncommon. Research shows that parents of children with cancer experience psychological stress during the child’s treatment. After treatment is complete, parents report higher anxiety, depression and posttraumatic stress than the average population. However, formal mental, emotional and social support for parents is not typical after a child’s cancer diagnosis.

In a study published in JAMA Network Open, Seattle Children’s researchers addressed this need, adapting an intervention previously used for teens and young adults with cancer. They found that one-on-one sessions teaching skills through a tool called Promoting Resilience in Stress Management for Parents (PRISM-P) improved resilience and benefit finding, or personal growth, among parents of children with cancer. Read full post »

Henry with his sister, Alice, at Remingler Farms, enjoying a train ride.

In recognition of Childhood Cancer Awareness Month, Louisa Cranston shares her experience caring for her 3-year-old son, Henry, who was recently diagnosed with cancer.

My husband Robert and I are both Seattle natives. We met and began dating 10 years ago now, and will have been married for five years this October. Our son Henry was born in 2015, and his sister Alice followed in 2017.

Henry was and in most ways still is a very typical toddler. He loves playing outside, watching cartoons, and spending quality time with his people. He is an eager helper in the kitchen and anything he can do by himself, he wants to do by himself. Often when we are together, he echoes the words of his hero Daniel Tiger: “Mommy, I like to be with my family!”

When Henry arrived in our lives and made me a mother, I experienced a whole new set of emotions for the first time. I now understood the depth of the love my own parents felt, the glowing pride, and above all, the worry. The sleepless nights waiting for me to come home made sense. The lectures on safety and responsibility made sense. Because from now on and forever, I was only okay if Henry was okay.

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