When a parent has a malignant brain tumor: an innovative weekend camp for families

This article was written by Mary Lovely PhD, RN, CNRNs, is a Special IBTA Advisor and lives in San Francisco, United States and was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here.

THE Milton Marks Neuro-Oncology Family Camp (MMFC) is an annual weekend camp retreat, providing respite and community for families with children, where one parent has a malignant brain tumor.

Milton Marks’ legacy

Abigail and Milton Marks with their children. After a brain tumor journey with her husband, Abigail Marks established the Milton Marks Neuro-Oncology Family Camp (MMFC)

In 2010, Milton Marks III was diagnosed with a malignant brain tumor and began a two-year journey - along with his wife and three young children - that profoundly changed their lives. After Milton’s death in 2012, his wife Abigail (a clinical psychologist) imagined a camp where families like theirs could find respite from the demanding and devastating day-to-day realities of living with brain cancer. Abigail also recognized the importance of establishing a community to combat the social isolation that is often central to families’ experience of living with this disease.

Abigail presented her idea to Margaretta Page, Milton’s nurse at the University of California San Francisco Medical Center (UCSF), and she - along with the UCSF Neuro-Oncology Department’s chair, Susan Chang, MD - were enthusiastic about the idea. Nurses, doctors, social workers and other interested members in the community established a committee and the project moved forward.

Two camp weekend sessions

Two annual camp weekend sessions have taken place so far - in October of 2014 and 2015. This year’s camp is scheduled for October 6th to 9th, 2016. Each camp has hosted 11 families, all attending free of charge, with children ranging from three months to 21 years old. Camp is held for three days in a beautiful camp setting, Camp Newman, north of Santa Rosa, California.

Evaluations, done by the participants, exhibited overwhelmingly positive responses about how this camp helped the family. At the final circle, the staff and campers were all very emotional having been part of such a meaningful experience.

Community spirit and compassion prevails

MMFC helps relieve family stress and allows time for respite. The weekend retreat provides a chance for a family to have fun together, in a natural environment, where basic needs are already provided. There is no food to cook, and no laundry to do.

Saturday evening around the campfire for family and staff

Saturday evening around the campfire for family and staff

Camp staff constantly look to support and even pamper family members whenever possible during the weekend. Campers experience being cared for by a community wanting to support them in being able to escape the normal confines of illness, even if just for the weekend. Some families have described how it is the first time since diagnosis that they felt comfortable receiving help – for their children, and for themselves.

A key ingredient to make everyone feel safe at camp is planning for the unique and varied needs of brain tumor patients. The medical care staff, which includes nurses, doctors, volunteers, and psychologists, prioritizes patients who may be physically or cognitively impaired and need close supervision. Patients are often unaware that they are being closely monitored. Families can feel comfortable engaging in their activities and don’t need to worry about their loved one.

Camping fun and camaraderie

The weekend features traditional camp activities: campfires, s’mores (a marshmallow, graham cracker and chocolate treat roasted over the campfire), singing camp songs and swimming, all of which build community and are lots of fun! Families work on art projects together that help them learn more about themselves and their relationships as a family.

Kids spend part of each of the three weekend days in a “camp within a camp” where they have a full program with other campers their own age and counselors trained to work with children whose parents have cancer.

Two dads enjoying a conversation at camp

Two dads enjoying a conversation at camp

Parents can participate in support groups with other patients or caregivers, take workshops, have couples' meetings, enjoy a massage, yoga, or participate in meditation or nature walks. A special ropes course just for caregivers on the final day of camp gives them a sense of their own - and each other’s - tremendous strength in the face of huge obstacles. After families return home, they receive a formal family portrait taken by the camp’s professional photographer, Nano Visser, and a camp memory book.

A highlight of the camp is how MMFC gives isolated family members a chance to connect to a community of others who are experiencing similar things, a sense of connection and support. Families attend from hundreds of miles away. Many families have not met others who have lived with a brain tumor. They have the opportunity to interact and share their experiences.

Parents sit quietly and talk together until late into the night. Children truly enjoy meeting other children who carry the same burden they do. From the beginning of the camp, families quickly find each other and relationships begin. Campers also meet staff who understand the stress. The staff allow them to do what they needed. Therapists, psychologists, social workers and counselors make every effort to provide peace and solace.

Collaboration ensures a great camp experience for families and professionals alike

Essential to the success of the camp is the unique collaboration with the UCSF Neuro-Oncology department. Families who have attended camp describe how meaningful it feels to have so many of the staff from UCSF at camp for the whole weekend, and to experience how their doctors, nurses, and social workers really “get” what day-to-day life is like for them outside of the clinic. UCSF social workers are able to evaluate participants, identify high-risk families, and continue to follow up after camp. From spending time with them so intensively in this different setting, medical staff have described the new insights they get into their patients’ lives.

Patients and families leave camp feeling cared for, with a stronger sense of who they are as a family, how the illness may be impacting them, and how they might want to move forward together. They have made new friends with other families going through the same journey, and with staff who understand them. Many families find that the breathing room camp gives them, leaves them feeling more deeply connected to each other and to their new-found community.

While camps for child patients and their families are available for various pediatric conditions (including pediatric brain tumors), the MMFC is the first camp for families where a parent is ill. The MMFC is an innovative program for family members to come together as a unit, for families to become a community with other families, and to bond with their healthcare professional team. Since the camp provides such an intimate, healing setting, we hope that other places may adopt this model.

For more information about the MMFC please visitwww.miltonmarksfamilycamp.org

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