By St. Baldrick’s infrastructure grant recipient Dina Hankin, Ph.D. The patient’s name has been changed in this story out of respect her family.
Beth was diagnosed with childhood cancer when she was 16 years old. Now 25, Beth has successfully graduated college and completed a teaching credential program, but she continues to be challenged by the emotional impacts of her cancer journey.
Teenagers and AYA (Adolescent and Young Adult) cancer patients are at the developmental stage when they are trying to become their own person. It is a stage when they seek time with peers and test their skills of independence.
When cancer hits a teenager, instead of moving toward independence, they find themselves depending more on their parents to help take care of their basic needs and cancer slows down their active lifestyle.
Moreover, teens with cancer can become isolated. When their counts are down, they can’t leave the house or be with crowds of people. They miss school, so they regress, or begin to behave like a younger child. They feel frustrated and angry, which can cause depression. Or, depression starts because they spend so much time alone or with their parents while their friends are going to the movies, learning to drive, and doing other activities on their own.
Frequently, I’ve observed many parents who start behaving in an overprotective way. I help educate parents that when their kids’ counts are OK, they should be participating in as many normal activities as possible. But parents are worried because of the medical challenges their teenagers are facing.
My work involves treating long-term cancer survivors who are off treatment in a multi-disciplinary, once-a-month clinic, which is funded by the St. Baldrick’s Foundation. I work with a team of specialists who focus on the medical long-term effects of cancer survivors, but also their psychosocial, emotional, and financial long-term effects.
As a psychologist in oncology at the Children’s Hospital and Research Center in Oakland, California, I meet with cancer survivors like Beth, and address the emotional impact cancer has had on them. I also look at other long-term effects, including cognitive, emotional, or physical disabilities.
Cancer survivors that develop a disability often don’t have resources to get a job or continue in school, or they may have a clinical psychiatric diagnosis of depression or post-traumatic stress disorder. It means that even though they have completed their treatments, survived cancer, and tried to go back to their normal lives, they face many challenges moving forward.
We’re also finding that kids and teens who survive into adulthood struggle with attention, concentration, memory, and executive functioning, as well as planning and processing skills and organization. I counsel them on the valuable resources that are available to them, which can greatly improve their quality of life.
As adults, survivors have financial challenges due to a pre-existing condition, and currently many have a hard time getting medical insurance for treatments or follow-ups that are imperative for their long-term survival. Our clinic addresses these issues by providing social workers who meet with cancer survivors and help them tackle their financial challenges.
Thanks to the St. Baldrick’s Foundation infrastructure grant, AYA cancer survivors are able to meet with us and come to our clinic even if they don’t have medical insurance. We don’t turn anybody away. We also see siblings, parents, and others affected by cancer.
For now, Beth continues to have follow-up meetings at our clinic and she is trying to choose a career path. With her childhood cancer experience, she knows she wants to do something to help others. This is true for most of our survivors; they seek meaning in the work that they do. And, as time passes, we hope that the effects of childhood cancer get easier for a majority of them so they can begin to live long and healthy lives.
Read the childhood cancer journey of young adult cancer survivor Sarah Swaim, one of St. Baldrick’s 2012 Ambassador Kids.