A weekend retreat can provide a chance for a family to have fun together, in a natural environment, where basic needs are handled for them. There are many engaging activities for patients and kids so that caregivers can have some time on their own or share time with other individual family members. Family camp allows all members of the family to temporarily escape the daily burdens of the illness.
Family camp gives isolated family members an opportunity to connect to and draw support from a community of others with similar experiences. Patients and families can have a better sense of the impact of the illness on themselves, their spouses and their children, can participate in therapeutic activities together, and attend workshops that can help give them tools to cope and lessen the stressful impact on their children.
For the healthcare team, spending a weekend with families outside of the clinic or hospital setting provides greater insight into each family's unique needs and coping styles. The healthcare team can then craft or modify the family's individual care plan accordingly.
"The Milton Marks Family Camp is an extraordinary opportunity for me to spend unstructured time with my patients and their families, and to really get to know them as people in a way that is simply not feasible within the confines of a clinic visit. I find it fulfilling and rejuvenating each time I attend camp, but humbling too, because it brings home just how widely a patient’s symptoms can impact their and their family’s lives. Also, I think it's valuable for patients and family members to have the chance to see me and other medical staff members as “regular people”, affirming that we’re all human underneath it all."
UC San Francisco Neuro-Oncology Physician
(4th Year Camp Attendee)
Why focus on families of brain tumor patients?
The diagnosis of a brain tumor is often associated with significant stress, loss, and isolation, in addition to cognitive changes and other symptoms unique to this patient population. While support groups for brain tumor patients and their families currently exist in many communities, the Milton Marks Neuro-Oncology Family Camp represents an unprecedented effort to address the needs of brain tumor patients and their families that reach beyond medical therapy.
Like many families with a critically ill parent, families struggle to adapt to the patients’ medical needs and the loss of income and shifting roles that come with serious illness. Families of brain tumor patients often must additionally cope with having an adult family member who may have substantial difficulties communicating, putting their thoughts together, and making decisions or judgement calls.
Often the healthy parent must assume more intensive caregiving duties -- both for the patient and for their children, as well as adapting to a new emotional reality, where their partner may be different in ways that feel difficult to understand. Everyone in the family, most especially children, may find it hard to adapt and to speak about what is happening and what may be down the road for all of them.
Each year, approximately 13-15 families attend camp, coming from all over California and the Pacific Northwest. Two families travel from the east coast. Every family includes a patient receiving care at the University of California San Francisco Neuro-Oncology clinic and has children living at home (small children to adolescents). Patients are well enough to travel to the camp grounds, are relatively mobile and not in need of intensive medical services while at camp.
A team of approximately 50 dedicated people volunteer at the camp, and includes nurses, physicians, social workers and other healthcare professionals from UCSF as well as other staff including trained youth counselors, therapists, musicians, art therapists, bodyworkers, spiritual care providers and portrait photographers.
Several members of the volunteer team have personal experience with brain cancer.
What happens at camp?
Massage Therapy and Bodywork
Nature Walks and Animal Tracking
Caregiver Support Meetings
Patient Support Meetings
Family and/or Couple's Meetings
Family Art Activities
Kids' Activities by Age: art, sports, drama
Improv and Charades
Campfire with S'mores
A TYPICAL DAY AT CAMP
Parent Discussion Groups
Child Watch/Adult Activities