For the past three autumns, a small gathering has taken place in the wild beauty of Sonoma County, California. There, doctors, nurses, musicians, therapists, and body workers, among others, have convened to offer support and respite to a unique group of people – families living with brain cancer.
But unlike many specialized family camps that focus on a child with cancer, this one flips that model – offering support to a family with a parent with cancer. It is the only one of its kind.
The diagnosis of brain cancer is a catastrophic event in the life of a family. The brain is the source of a person’s ability to communicate and interact. Certainly a breast or prostate cancer diagnosis can be devastating for an individual and their family. But the patient’s essential personality can remain intact throughout the grueling treatments. That may not be the case in glioblastoma, the most virulent and fast-moving type of brain cancer. And it is incurable.
Brain cancer can strike people in the prime of their life, when their children are young. During the months of treatment, a patient’s ability to speak, reason, laugh, or interact may be affected adversely. The sight of dad or mom deteriorating physically and mentally can cause immense suffering for the family.
In 2010, Abby Marks found herself living this life with her husband Milton Marks and their three young sons. After Milton’s death in 2012, Abby came up with the idea of offering a place of respite and connection for families experiencing the impact of brain cancer. Working with the University of California Medical Center’s (UCSF) Neuro-Oncology department, where Milton had received treatment and care, the camp launched in 2014.
The camp’s mission is to provide connection, community, and fun! It is a camp, after all. There are sing-a-longs at the campfire, art projects, music, ropes courses, swimming, and more. The UCSF doctors and nurses that tend to these families can also attend, adding a new dimension to the patient/medical professional relationship. There are therapists and body workers available, as well as a professional photographer to document this island of respite in the long haul of brain cancer. Families leave with sense of connection to others living this unique journey.
The Camp is now gearing up for its fourth year. A few families are returning. Most are new. All are looking forward to spending three days being cared for, understood, and encouraged as they navigate this difficult journey.
[Disclosure: Amy Gray is the operations manager for the Milton Marks Neuro-Oncology Family Camp]