Adolescent and Young Adult (AYA) Cancer

All Articles in the Category ‘Adolescent and Young Adult (AYA) Cancer’

Patient voices: At age 27, Hunter puts his life on hold to fight cancer

In honor of Childhood Cancer Awareness Month, we are sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.

At 27 years old, Hunter Storey had a great life in Sun Valley, Idaho. He worked as a fireman, enjoyed spending time with his girlfriend of eight years, and was an avid skier and ski instructor.

However, last December things started to change.

It was ski season and he was coaching ski racing to a group of high school students when, one day, he noticed a painful lump on his shin that didn’t seem right. He decided to see a doctor.

After what was first thought to be a broken bone, seven months later, he learned it was cancer – Ewing sarcoma to be exact. Ewing sarcoma is a bone cancer that mainly affects children and adolescents between the ages of 10 and 20 years old, but there are cases that occur at all ages.

“It was of course very shocking when I was diagnosed,” said Hunter. “But I was really lucky because I had caught it early.”

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Patient voices: Stacy celebrates 10 years cancer free, reflects on being chemo Barbie

In honor of Childhood Cancer Awareness Month, we will be sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.

My name is Stacy Helton and I am a 10-year cancer survivor. I celebrated this momentous milestone in July by flying to Florida to be with my family. We reflected upon how far we’ve come over the years and how much we’ve grown together.

Before sharing where I am today, it’s important to describe what has got me here.

I was diagnosed with Hodgkin Lymphoma when I was 16, the day before Christmas break my junior year of high school.

It was by happenstance that I learned I had cancer. I had slipped getting into my car, hitting my chin and chest on my steering wheel, and so my mom and I went to urgent care where I got a chest X-ray. Surprisingly it showed a tumor. Later I learned it was cancer.

It might sound funny, but when I got the news my biggest question was if I could start treatment after junior prom. I had already purchased my dress and had been looking forward to prom for months. Of course to my disappointment, I couldn’t wait and had to start treatment immediately.  

While everyone else was making last minute plans for the holiday break, I was on a flight from Anchorage to Seattle Children’s Hospital consumed with feelings of uncertainty. I was hopeful that treatment would go well because doctors said my cancer had a high survival rate, but I didn’t know what was in store for me.

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Patient voices: Jake beats cancer, starts new life at college

In honor of Childhood Cancer Awareness Month, we will be sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.

In the beginning of June 2012, Jake Steiner was on top of the world. At age 18, he had just graduated high school and was looking forward to working as a camp counselor at the Museum of Flight in Seattle over the summer. He would then be heading off to college at Santa Clara University in the fall. Life was good.

That is, until one week after graduation.

Jake had noticed a pain in his leg and he had a bump on the backside of hip bone that was about the size of his hand. He thought he had just pulled a muscle and a little TLC would take care of it, but his dad took him to a doctor because the bump was so large.

It was then that he got an MRI and received some of the worst news of his life: He was told that the bump was a malignant tumor, and after three weeks, he learned it was Ewing sarcoma. Ewing sarcoma is a bone cancer that mainly affects children and adolescents between the ages of 10 and 20 years old. It’s the second most common bone cancer in children, but only accounts for about 1 percent of all childhood cancers. There are about 200 new diagnoses of the disease in people younger than 20 years old in the U.S. each year.

“I didn’t know what my future was going to hold, but I knew I was not going to be able to go to college in the fall, which really bummed me out,” said Jake. “I was also very scared because I thought I caught it too late and I didn’t know if the cancer had spread. I thought I would die young, and that terrified me.”

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Seattle Children’s patient has positive response to new cancer treatment

Lynsie Conradi_cropThe first patient in a cellular immunotherapy Phase 1 cancer trial at Seattle Children’s has had a positive response to T-cell therapy. The 23-year-old patient, Lynsie Conradi, from Bellingham, Wash. received the welcome news yesterday. Conradi signed up for the study after experiencing a second relapse of leukemia earlier this year.

The new treatment involves drawing blood from the patient, reprogramming their infection-fighting T-cells to find and destroy cancer cells, and infusing the blood back into their body.

“Results show that Lynsie has had a positive response to the T-cell therapy and, at this time, we do not detect any leukemia cells,” said Rebecca Gardner, MD, principal investigator for the clinical trial.

The next step for Lynsie is a stem cell transplant, with the aim of clearing the cancer from her body. The goal of the immunotherapy cancer trial was to get her to this stage. Read full post »

Building Hope expansion full, getting rave reviews one month after opening

Building Hope patient roomIt’s been one month since Seattle Children’s new cancer, critical and emergency care expansion opened to patients and the inpatient units are already full. The new Emergency Department (ED) on the ground floor of the building has also seen higher-than-normal patient volumes. Patients and staff are giving Building Hope high marks.

“It’s unbelievable to see it as a real building. It’s amazing that it’s so similar to the cardboard mockup we built three years ago,” says Mandy Hansen, Building Hope project manager. “There’s a great sense of pride about all the hard work that went into building a space that really supports our patients and families.”

New inpatient rooms already full

The new critical care and cancer care units in Building Hope filled up almost immediately after the building opened. Twenty patients moved into the new cancer unit on April 21, but volumes quickly grew. At times since the opening, all 48 beds in the unit have been full (up from 33 beds in the previous unit). Read full post »

Patients move into Building Hope expansion

Russell Wilson Building Hope

On Sunday, April 21, care teams moved patients into new cancer and critical care units in the Building Hope expansion, including the country’s first teen and young adult inpatient cancer unit. Patients, hospital leadership and staff, and Seattle Seahawks quarterback Russell Wilson helped celebrate the opening with a ribbon-cutting ceremony.

The expanded emergency department opened to patients Tuesday, April 23. The new ED has 38 exam rooms and features a new model of care that will reduce wait times and allow patients to be seen by a nurse right away.

The video below offers a behind-the-scenes look at the first patients moving into Building Hope.

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Building Hope, Part 5: Meet the people behind the design

Building HopeMore heads are better than one—especially when it comes to designing Seattle Children’s new expansion, Building Hope. Children’s brought together a unique advisory board made up of patients, families and hospital staff to provide feedback throughout the design process.

With Building Hope, Children’s wanted to create an environment that would support the physical, emotional and psychological aspects of healing. Who better to understand the subtleties of the patient experience than actual patients and their families?

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Seattle Children’s to open country’s first dedicated teen and young adult cancer unit

Cancer Patient Room

Cancer Patient Room

On April 21, Seattle Children’s Hospital will be the first hospital in the country to open an inpatient cancer unit dedicated to teens and young adults. The 16-bed unit will occupy the top floor in the hospital’s new Building Hope facility, which will house inpatient cancer treatment, critical care treatment and a new Emergency Department.

Teen and young adult patients in the new unit will benefit from the support of their peers, as well as an enhanced package of psychosocial support programs that will improve their treatment experience.

The unit will also be the new home of Children’s Adolescent and Young Adult (AYA) Oncology Program, which was one of the first five cancer programs for teens and young adults in the U.S. Children’s AYA program has been a model for the development of other programs across North America, and will now set the stage for opening a new space for this age group.

“It’s going to be a groundbreaking event in the U.S. to have a unit like this dedicated to teens and young adults,” said Rebecca Johnson, MD, oncologist at Seattle Children’s. “It presents an opportunity for us to continue with the development of new programs for this age group. Our unit will also provide an example to other institutions of how to deliver quality care for teens and young adults in a dedicated space.”

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Building Hope, Part 1: Top Ten Features of Cancer Inpatient Unit

Cancer Patient Room

In April 2013, Seattle Children’s will open Building Hope, a new  facility that will house a new cancer inpatient unit with 48 single patient rooms. Additionally, Building Hope will include 32 private rooms for critical care treatment and a new Emergency Department.

The cancer care space will span two floors and offer several features that will make a patient and their family’s stay as personalized and comfortable as possible.

A 16-bed teen and young adult cancer space will occupy its own floor, where patients will benefit from the support of their peers in an age-appropriate environment. No other hospital in the United States currently offers a dedicated inpatient unit of this size for the care of teens and young adults with cancer.

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Life Derailed Facing Cancer as a Teen

In June 2006, just five days before high school graduation, Heather Krich was diagnosed with cancer. She was 18 years old and while all of her friends were about to go off to college and taking senior trips to Mexico and Hawaii, she took a trip to the inpatient clinic at Seattle Children’s Hospital.

“Just as my adult life was supposed to be starting, I was faced with the possibility of life ending,” said Heather. “It was really overwhelming as dealing with cancer just wasn’t what I was supposed to be doing at that time in my life.”

Heather was diagnosed with non-Hodgkin lymphoma. Doctors at a different Seattle area hospital had initially thought her appendix had burst but discovered in surgery that she instead had cancer.

After receiving the alarming diagnosis, one of Heather’s main concerns was attending her high school graduation. Luckily, with a little help, Heather was able to make it.

“I was in a wheelchair and my twin sister pushed me up the ramp onto the stage so that I could accept my diploma,” said Heather. “It wasn’t how I imagined it would be but I was very happy I could be there.”

After graduation, her doctors referred her to Children’s as they determined her cancer would be best treated at pediatric hospital. Research shows that, for certain kinds of cancer, teens and young adults have dramatic improvements in long-term survival when they are treated on pediatric treatment protocols. In fact, when young adults are treated on pediatric protocols, their long-term survival improves by about 25 percent.

Heather spent the next 13 months in treatment at Children’s. In July 2007, she was thrilled when her cancer went into remission and she ended treatment.

Facing the Challenges

In looking back, Heather said there were many challenges in facing cancer as a young adult, from adapting to the physical changes to following all the rules that go along with inpatient treatment. However, at an age when peer support is so important, she said that the biggest challenge was feeling alone and isolated after having her life derailed with the diagnosis.

“It was a rough time already because it was that transition period into adulthood where you don’t really know where you fit in, especially going through cancer, and you have no one to talk to or relate to,” said Heather. “All of my friends were moving on with their life and they couldn’t grasp or understand my situation. Some of my best friends even stopped calling me.”

Now at 24 years old, Heather was excited to reach her five-year cancer free mark which happened in July 2012. But her experience has left its mark and it has inspired her to be a resource and a support for other patients like her.

Finding a Calling to Give Back

About three years after Heather’s treatment ended, Children’s Adolescent and Young Adult (AYA) Oncology Program sought out to create an online resource that would provide education and peer support to teen and young adult patients across the globe. They brought together a group of AYA cancer survivors, including Heather, and created the video series, “Good Times and Bald Times”, to show how a group of teens and young adults talk to one another about coping with cancer.

“It was so much fun to be involved and it is such a great therapy tool for other patients out there,” said Heather. “It was incredibly therapeutic to look into the eyes of someone else that understands your experience and hear that you aren’t the only one that has gone through these struggles.”

Children’s AYA oncology team asked Heather if she would be interested in being a resource for other teen and young adult cancer patients and she happily agreed. She now serves as a mentor for a patient that recently ended her treatment. They get together to share their experiences and Heather offers insight about transitioning into life after cancer.

“Having that mentorship and camaraderie is wonderful,” said Heather. “Transitioning into regular life is very difficult and it’s hard to even know where to begin and how to navigate back to normalcy. It gives so much hope to see someone on the other side, and I am glad I can provide that perspective.”

Feeling like she has found her calling, Heather is now going back to school in February to become a child life specialist who works with teen and young adult cancer patients.

“I feel such a pull to young adult and teen cancer patients and survivors and I would love to be able to give back and offer support,” said Heather. “I feel it is what I am meant to do.”

A Shoulder to Lean On: Children’s AYA Oncology Program

About 70,000 young people in the U.S. aged 15 to 39 are diagnosed with cancer each year. Teens and young adults comprise a significant population of patients receiving cancer treatment at Seattle Children’s. About a fourth of the patients treated in Children’s inpatient unit are age 15 and older.

The difficulty of facing cancer at this age and the need for psychosocial support is something that Dr. Rebecca Johnson, medical director of the Adolescent and Young Adult (AYA) Oncology Program, understands all too well, not only as a doctor but also as a cancer survivor.

“Teens and young adults have a greater reliance on their peer group as they look to one another to see what milestones they should be reaching,” said Dr. Johnson. “Cancer treatment takes them away from their peers, which can be very distressing. It is important to provide our teen and young adult patients with an enhanced package of psychosocial support in order to improve their treatment experience and help them better process what they are going through.”

Dr. Johnson and her team are working to provide innovative programs and resources at Children’s that will improve the lives of adolescent and young adult cancer patients that will provide this much needed support.

In addition to the “Good Times and Bald Times” videos mentioned above, here is a sampling of some of the other programs and resources, many of which have been made possible by Seattle Children’s Guild Association Teen Cancer Fund:

Not Now Program

This May, you might have heard some buzz about a music video on YouTube where patients on Children’s Hematology Oncology floor sang and danced to Kelly Clarkson’s hit song “Stronger.” The video received worldwide attention and it was thanks to 22-year-old patient, Chris Rumble, who made the video as part of Children’s Not Now creative arts program. This was just one example of the work being done within the program.

The aim of Not Now is to help teens and young adults cope with cancer and provide psychosocial support through creative projects and by connecting them with peers. Led by John Blalock, Children’s Hematology Oncology Artist in Residence, the program gives patients a voice in telling their story through a variety of mediums including photography, video and music.

“What is so neat about the program is that it not only lets patients process their own cancer experience in a way that is creative and fun, but their art projects also give them a wonderful way to share their journey with friends and family,” said Dr. Johnson.

Other projects within the Not Now program have included:

Inpatient Gatherings

In order to help provide a peer group for teens and young adults with cancer, Children’s AYA life specialist hosts regular inpatient gatherings where patients can come together to talk, play games and do different activities.

“Teens and young adults use interactions with peers to process and reflect upon their life experiences. We provide sessions where they can come together and see that they are not alone in their experience,” said Dr. Johnson.

With the hospital’s expansion and opening of Building Hope next year, Dr. Johnson and her team also aim to increase the number of inpatient and outpatient psychosocial offerings in the new dedicated floor for AYA patients. In order to connect AYA patients from other hospitals, and inpatients who are in isolation, they are also looking into using video conferencing technology for the sessions.

Look Good Feel Better Classes

In order to improve patients’ self-esteem, Children’s hosts quarterly Look Good Feel Better classes, which are offered through the American Cancer Society. The classes help patients learn beauty techniques to help them manage the appearance-related side effects of cancer treatment.

Patient Advisory Board

Children’s has also created a Patient Advisory Board comprised of AYA cancer survivors who have expressed a desire to give back after their treatment. The group meets and consults with the AYA Oncology Program to offer their perspective on new programs and act as a support for current patients when needed. The group was also instrumental in providing input about the design of the new dedicated AYA floor that will be in Building Hope.

Heather is a part of this group as well and she is happy to be involved. She is also excited to see all of the tools and resources that are becoming available through the AYA Oncology Program.

“I’m so happy that there are so many tools at Children’s directed at teen and young adult cancer patients,” said Heather. “Having those available will help them better cope and get through their treatment with more ease.”