At 16 years old, Jasmine Bennetsen got a life-changing diagnosis: Fanconi anemia (FA), a rare disease that prevents her cells from repairing certain types of DNA damage, which can cause cancer. “Finding out I would be lucky to survive past the age of 22 was devastating,” said Bennetsen. “I had many dreams that I wanted to pursue, but from that moment on my whole life perspective changed. I wrestled with helplessness for a while trying to find what ‘normal’ meant for me.”
Dr. Megan Voss and Dr. Maureen Anderson, both faculty at the Earl E. Bakken Center for Spirituality & Healing and nurses in the University of Minnesota Pediatric Blood and Marrow Transplant (BMT) Program at the Masonic Childrens’ Hospital, have extensive experience working with people battling cancer or a rare disease.
Through one-on-one interactions with patients, they saw the need for psychosocial support after treatment. This realization inspired them to create “Taking Charge of Your Survivorship,” an interactive, online resource for individuals with cancer or rare diseases, survivors, and their caregivers. Provided by the Center to all seeking support, this free website features expert advice, resources, and more.
“One impetus for the website was that 50 percent of BMT patients come from states outside of Minnesota,” said Voss, who founded and directs the Integrative Therapy Program in the BMT Program. “We were scrambling to find a cohesive resource to give patients who rely on our services when they leave the hospital.”
To learn what resources were most needed, Voss and Anderson hired Crux Collaborative, a user experience consulting group, to conduct extensive patient and family interviews. They found patients and their families valued continuity of care, access to integrative and mental health services, and the ability to evaluate community-based integrative practitioners after leaving the hospital.
A Unique Undertaking
The website is unique because it is designed by survivors, for survivors, and is a trusted source of reliable, evidence-based information.
“There is a significant amount of poor information online, specifically related to integrative therapies” said Voss. “Many family members may join Facebook groups that are meant to be supportive, but also contain a lot of misinformation. We wanted to provide a safe space online that was facilitated and curated by experts, but broad in patient experience.”
The website is also distinct because it features resources for many patients — mainly between the ages of 15 and 39 — who feel caught between a pediatric world and a world of older, established adults battling cancer. It was also designed with patients who live in rural areas in mind as they often have less access to mental health care.
“Some of the updates available next year will include resources for developing independence and conversation toolkits,” said Voss. “We want to empower patients with the words to get their needs met when they require help from a new care team member, and the tools to organize their medical records when they go away to college. We’re absolutely thrilled to continue building out the website in the months ahead.”
For these reasons, Voss and Anderson sought to create an extensive and reliable resource for patients and their families.
Building a Trusted Resource
Visitors to “Taking Charge of Your Survivorship” can find virtual support, resources to maintain good physical and mental wellbeing, access to integrative therapies, and resources for the whole family.
Expert advice on good physical wellbeing includes how to maintain healthy nutrition, get adequate physical exercise, and the importance of quality sleep. Learning how to cope with anxiety, depression, loneliness, and finding meaning and purpose in life are just a few of the topics on the mental health portion of the website.
Angela Bedoya knows how helpful mental health resources and integrative therapies are. At five years old, she was diagnosed with FA like Jasmine. At 17 years old, she received a stem cell transplant after her bone marrow cells began developing mutations.
“A resource like ‘Taking Charge of Your Survivorship’ is very important because there were almost no resources to integrative therapies when I received my transplant,” said Bedoya. “Several years after my transplant, I was able to access massage therapy and mindfulness techniques from Megan and Maureen to really enhance my long term care.”
Scanxiety, or anxiety tied to scans and tests, is a common struggle for people diagnosed with cancer or a rare disease, which is heavily explored on the website.
“For some, scanxiety may precede their appointment by a few weeks, significantly impairing their quality of life,” said Anne Blaes, an associate professor in the Division of Hematology, Oncology and Transplantation at University of Minnesota Medical School. “That’s why it’s so important to learn how to cope with anxiety.”
The website also contains resources for caregivers experiencing physical and mental stress including how to build resilience and parent mindfully. Periods of transition can be particularly challenging for patients and families as well.
“Many caregivers ask how to prepare to let their child go to college or how to remain present for their other children when caring for one child. We want to be the place that caregivers come to, to ask those questions and find solutions and understanding,” said Anderson.
Offering robust information on numerous integrative therapies was also important to Voss and Anderson. Information on mindfulness, essential oils, and music therapy, including how to find therapies near you, are just some of the topics explored.
A Perfect Partnership
Believing in the power of integrative therapies was one of the primary reasons Blythe Brenden gave the generous donation from her organization, the Blythe Brenden-Mann Foundation, through Children's Cancer Research Fund (CCRF), to support this resource.
“I believe that integrative therapies, including access to expert advice, benefits the whole family,” said Brenden. “If you learn to play an instrument, how to calm yourself or change your mindset with deep breathing or meditation, you can take those skills with you anywhere.”
With CCRF’s goal of helping survivors thrive as they grow into adolescence and adulthood, CCRF’s Vice President of Mission and Marketing HaiVy Thompson shares that this resource is vital. “This website is so valuable because it ensures families have access to the healing and coping experiences provided by integrative therapies, even once they’re back home.”
“Taking Charge of Your Survivorship” is a companion to the Center’s “Taking Charge of Your Health and Wellbeing” website, which aims to empower people with information and tools to improve their health and wellbeing.
“We’re proud to host the ‘Taking Charge of Your Survivorship’ website in partnership with the BMT Program to help people along their survivorship journey,” said Dr. Mary Jo Kreitzer, Center founder and director.
Future Developments
Website visitors will have even more to explore in 2021, with the addition of a peer support component in partnership with Caring Bridge, the ability to set up telehealth appointments for integrative health and mental health, and more.
“Some of the updates available next year will include resources for developing independence and conversation toolkits,” said Voss. “We want to empower patients with the words to get their needs met when they require help from a new careteam member, and the tools to organize their medical records when they go away to college. We’re absolutely thrilled to continue building out the website in the months ahead.”
To learn more about “Taking Charge of Your Survivorship,” visit takingcharge.csh.umn.edu/survivorship.