Adolescent and Young Adult (AYA) Cancer

PART FOUR: From witnessing exceptional care and compassion given to children in their own lives, to receiving treatment first-hand, this weekly series features Seattle Children’s employees and the life experiences that drove them to pursue careers in healthcare.

Natalie Jean Ahrens (left) helped care for Becky Greenway when she was a pediatric patient at Seattle Children’s

In 1991, Becky Greenway was a 17-year-old student facing chronic knee pain throughout her senior year of high school.

“My pain was worse at night and the only way I could get any relief was by soaking it in the bathtub,” she recalled.

Greenway sought care from several primary care doctors who provided varying diagnoses, including tendonitis, growing pains and a possible mental disorder.

“This fourth doctor couldn’t find any reason for my pain, so he was convinced it was all in my head,” Greenway explained.

Feeling exasperated, Greenway’s mother pushed forward, certain that the root of her daughter’s pain was something more serious.

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Faye Prekeges’s senior photo, taken one year before her cancer diagnosis. Faye was the first patient at Seattle Children’s to have her ovary removed and frozen to try to preserve her fertility while undergoing treatment for high-risk leukemia.

At 19, Faye Prekeges was not planning for parenthood. She was a freshman at Northeastern University in Boston, Massachusetts. She spent her days thinking about majoring in French and dreaming of working with the United Nations Refugee Agency, not about whether she wanted to be a mother one day.

But an unexpected diagnosis changed all that.

Six weeks into her second semester, Faye began having high fevers and visited the university’s health clinic. Providers suggested she had the flu and would feel better in about a week, but her symptoms quickly grew worse. A few days later, she woke up with a fever of 104 degrees.

Faye thought to herself, “I need to see a doctor now.” She took an Uber to Boston Medical Center’s Emergency Department and tested positive for mononucleosis. They kept her overnight because her white blood cell count was abnormally low.

“Luckily, the woman looking at my slides noticed what she thought were blast cells (primitive, undifferentiated blood cells, often found in the blood of people with acute leukemia) and sent them to the pathologist, who confirmed they were,” Faye said.

She was transferred to Boston Children’s Hospital, where she was diagnosed with high-risk B-cell acute lymphoblastic leukemia.

“I believe everything happens for a reason,” Faye said. “I feel like, this happened to me and my family because we are strong enough to get through it.” Read full post »

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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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 »

Milton Wright III has returned to work at the hospital that saved his life.

Milton Wright III has only worked at Seattle Children’s for a couple months, but the hospital has been his second home for much of his life.

Milton’s childhood unfolded within Seattle Children’s walls — making friends, experiencing loss and facing death more times than he can count.

Today, Milton is back at Seattle Children’s — not as a patient, but as an employee and a symbol of hope.

“I want to do something that’s worthy of my life being saved,” Milton said.

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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 »

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 Cancer and 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 »

About 70,000 young people ages 15 to 39 are diagnosed with cancer each year in the U.S., and cancer is leading cause of death from disease in this age group. While cancer survival continues to improve for children and older adults, outcomes have greatly lagged for teens and young adults.

In recognizing this worrisome disparity, the medical community is working to identify the factors that may be contributing to this population’s inferior survival outcomes. In a study featured today on the cover of Cancer, “Insurance status and risk of cancer mortality among adolescents and young adults,” researchers have identified one of those factors: lack of health insurance and limited access to medical care. Read full post »

In honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!

Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials

Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got ‪FDA‬ approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.

Visit with Macklemore Helps 6-Year-Old Heart Patient Recover

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »

You may remember Kat Tiscornia from September of last year when she shared her experience of battling Ewing sarcoma and becoming “Titanium Girl.” Kat, now a sophomore at Mercer Island High School, asked On the Pulse if she could share an important message with those who cared for her at Seattle Children’s. We think you’ll enjoy reading it as much as we did.

Thank you. It’s just two simple words. In some languages it’s just one, gracias or merci for example. I was brought up to say thank you all the time. Thank you to my teachers, my coaches, my bus driver and the store clerk behind the counter. Are these two words really enough though? What if it’s a big thank you? What if the people you want to thank are the reason you are standing here today?

In March 2013 I was diagnosed with Ewing sarcoma, a rare form of bone cancer. I was at Seattle Children’s Hospital when I first met my oncologist, Dr. Doug Hawkins. I will never forget that day. He had to deliver the worst news of my life. However, as he told me that I had a cancerous tumor in my leg, his voice was full of compassion, patience and honesty. He was honest about how hard this journey I was about to embark on was going to be. I remember being very scared that day, but I never felt hopeless. He had a plan for me and I trusted him. Thank you, Dr. Hawkins. Read full post »