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 a 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 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.”
Parenting a child with a longstanding or life-threatening illness—including chronic pain, cancer, diabetes, asthma and traumatic brain injury—can have a negative impact on many aspects of a parent’s and family’s life. Parents often have difficulty balancing care for their child with other responsibilities such as work, social life, finance and household tasks.
