Caregiver News

Building a Community for Families Living with a Parent's Brain Tumor

 

For much of the year, Abigail Levinson Marks is a clinical psychologist in private practice and a mother of three lively boys. But for one weekend every Fall, she becomes camp counselor, inspiration, and guide to more than a dozen families navigating the same experience hers has – living and coping with a parent’s brain cancer.

In 2010, Marks’ husband Milton Marks III was diagnosed with a glioblastoma. At the time, their twins had just turned four, and their oldest son was eight. “Even knowing what I know as a psychologist, and having done work before on bereavement and family illness, it was still a very isolating experience,” said Marks.

 

The Marks Family
Abigail and Milton Marks with their three boys.

 

Brain tumors can be especially challenging because they can affect what a patient is able to do, even how they think or speak. As Marks explains, “Brain tumors can impact how a parent is able to interact with their child, and that can be really confusing. It’s different from a lot of cancers where the patient can be very present until close to the end.”

After Milton passed away in 2012, Marks decided that she would build the kind of community experience that she wished her family had during Milton’s illness. “I wanted to create an experience where families feel like they’re in a village of people who all get it. I want people to feel like they’re in a place where they belong and feel less alone, to know that they’re part of a real community,” said Marks.

When sharing her idea with Margaretta Page, who was one of Milton’s nurses at UCSF, Abby recalls Page’s immediate encouragement: “She said, if you want to do this, I will help you.” In collaboration with an extensive team of UCSF doctors and nurses, Abby and Margaretta forged ahead – and the Milton Marks Neuro Oncology Family Camp was born.

 

UCSF nurse Margaretta Page at Family Camp
Margaretta Page MS, RN, poses with an art project at this year’s Milton Marks Neuro Oncology Family Camp. Together, Page and Marks organized and launched the first camp in 2014, with help from UCSF nurse Emelia Barani, RN; UCSF assistant professor Mary Lovely, RN, PhD; UCSF clinical social worker Judy Patt, MSW, OSW-C, ; former UCSF neuropsychologist Amanda Marr; and UCSF neuro-oncologists Jennifer Clarke, MD, MPH, and Susan Chang, MD.

 

Creating a Space for Families

Since 2014, the Milton Marks Neuro Oncology Family Camp has hosted over 35 families affected by a parent’s brain cancer, providing them with a weekend of much needed respite. Held annually in Santa Rosa, amidst an idyllic landscape of towering trees and quiet, winding paths, the camp provides a peaceful space for families to take reprieve from their daily burdens, and connect with a larger community.

UCSF Neuro-Oncology Fellow Sarah Lapointe
UCSF Neurological Surgery Fellow, Sarah Lapointe MD volunteers at camp for the first time. Her hope is to understand more deeply the experiences of her patients and their families. She hopes to someday start a similar camp experience when she returns to her native Quebec.

The camp, which is largely funded by and planned in conjunction with the UCSF Neuro-Oncology Gordon Murray Caregiver Program, invites families with young children who have a parent receiving care at the UCSF Neuro-Oncology clinic. This September, the camp welcomed 12 families, some of them returning for the third or fourth time.

Marks explained, “I want parents to feel like their kids are having fun and being taken care of. I want the kids to know their parents are being taken care of, so they don’t necessarily have to worry. We want to take care of as much as we can, so families can really relax and reflect on this huge thing happening in their lives, and decide how they want to live their lives moving forward.”

Susan Chang, MD, Director of UCSF’s Division of Neuro-Oncology, is deeply involved in supporting the camp each year, and emphasizes the impact of the camp on the patients and their families. “When treatment at UCSF goes beyond the patient, to include the caregiver and family, I think it gives them that sense that we’re really here for them. We recognize that the journey is about the family, and not just the patient,” said Chang.

 

Where Therapy Meets Respite

With an illness like this, a family is constantly juggling the daily tasks of making appointments, researching treatments, and dealing with the changes a brain tumor patient goes through. “It becomes all-consuming and you feel like you’re always putting out fires or responding to a crisis situation,” explained Abby.

David Marks, Family Camp Counselor
David Marks, affectionately called by his camp name ‘Tri-Tip’, is Milton’s brother. He’s been a camp counselor since the beginning, and his favorite part of camp is the singing. As he simply explains, “It’s the time when you look around, and everyone is smiling.”

Instead, at camp the days are filled with activities like yoga and massages for the parents, pool time for the kids, art projects for the family and, of course, singing and s’mores around the campfire.

It’s a chance to simply enjoy time together as a family, while the camp takes care of all the families’ needs. Medical staff discreetly monitors patients’ conditions, energetic counselors keep the kids giggling, and the kitchen puts out a steady stream of meals and snacks.

For the last four years, Cathy and Martin Amaya have been coming to camp with their three children. Each time, the freedom and emotional release they see in their kids is priceless. Even young kids take on a big share of the emotional burdens, which is the case for the Amayas. “You don’t notice it at first, but they’re waiting for the same drop as we are. Right now, everything is great, but we all know my tumor is going to grow again,” shared Cathy, who was originally diagnosed in 2004.

“But the first time we left camp, my kids were laughing, they were happy and loud – everything you dream of for a kid. Our whole drive home was magic. It was something that we never thought we’d have again.” She added, “Every year, you can feel that release from the kids. And as much as we love staying at camp, I always say ‘I can’t wait to be driving home and feel that again.’”

 

Milton Marks Family Camp
Martin and Cathy Amaya, like all the camp families, get their portrait taken every year at camp. Many families bring special outfits, and often it’s a meaningful moment. As Marks explains, “For some families, it may be the only professional portrait they have together.”

 

The Lasting Impact of Community

At first, many new families are uncertain about what to expect from camp. Chris and Brittany, along with their daughter and son, have been coming to camp for three years now. Chris, who has been dealing with a brain tumor for fourteen years, admitted that Brittany had to drag him to the first camp. He added, “But I’m glad she did, because there’s nothing else like this, this sense of connection with these families.”

Milton Marks Family Camp
Brittany and Chris get their couples portrait done at camp. Having a professional photographer at camp is a major part of the experience; after camp, each family gets a personalized family photobook and a camp yearbook. These albums often become cherished family items.

John and Liz Franco feel the same way. They’ve been coming with their two daughters for the last four years. Liz explained, “You start at a different level of human connection. With these families, you don’t have to go through small talk or explain things.” For families that often have to explain their situation to new people (like the inevitable parent-teacher conference), being at camp is liberating.

And that has always been a powerful thing for Cathy Amaya. “Here, we get to free ourselves. I feel comfortable. I don’t feel looked at. I’ve had seizures here before, and never felt embarrassed,” she said.

While the camp does organize patient and caregiver support sessions, most of the weekend is not about formal counseling. Instead, the connections form quickly and intensely just from being at camp together. Cathy recalls her first year, when their yoga class turned into an impromptu conversation about everyone’s chemo drugs and their experiences with them. Hearing other patients’ stories and getting candid advice, has been useful from both a practical and emotional standpoint.

John Franco summarized it this way, “We’re all suffering with the same ailment, but at different parts of the journey. In the same day, we could be asking for advice and support from somebody, but then could turn around and be giving advice for someone that’s newly diagnosed.” Being able to not only receive, but also provide support is at once reassuring and empowering.

Milton Marks Family Camp
Liz and John Franco get their couples portrait taken at camp. Their two daughters have formed close bonds with the Amaya’s daughters, and look forward to the event all year.

 

The same is true for all the caregivers, who are adjusting to their new roles and may feel overwhelmed by the many responsibilities. Being able to share stories provides practical and emotional support to them too. Martin Amaya explained, “As a caregiver coming to camp, you get a lot of weight off your shoulders. You find people going through the same thing, and you think, ‘Ok, I’m not alone. I’m not doing this wrong.’ Or maybe you are – but you find out what they do, and what they’re going through.”

Overwhelmingly, the campers respond that the community is what keeps them coming back. The chance to be with families struggling through the same thing is incredibly meaningful, especially since brain tumors are relatively rare and have such an impact on family dynamics. As Brittany described, “These are things that tear apart families, and this camp… it’s like glue. Honestly, I don’t know where we’d be without the camp, or the connections we’ve made here.”

For those that knew Milton, the community that the camp provides is a meaningful and fitting legacy. Peter Stein, second-time camp volunteer and one of Milton’s childhood friends, described his initial reaction to camp, “Kids were being goofy with their dads. Moms were getting massages. People were just singing and I thought, ‘That’s Milton’s spirit.’ Because he was goofy and serious, and always wanted to connect people together. He was the person in our class that connected people; he was the glue. So, to hear families talk about camp as the glue – he would be thrilled.”

 

Family Camp is run entirely on donations, including from the UCSF Neuro-Oncology Gordon Murray Caregiver Program. The camp’s advisory board hopes to expand the number of families it can serve in future years, and would love to bring their model to other hospitals in the Bay Area.

Find out how you can contribute >