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.
WHO ATTENDS CAMP?
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.