13thirty Cancer Connects Now in CNY

Rochester-based group recently opened a new office in Liverpool — it helps teens and young adults cope with cancer

By Deborah Jeanne Sergeant

13thirty square logoReceiving a cancer diagnosis is tough. Lauren Spiker, executive director of 13thirty Cancer Connects hopes to help make the illness easier to bear for teens and young adults and their parents.

She founded the organization when her daughter, Melissa Marie Sengbusch, died in 2000 at age 19. It was known previously as Melissa’s Living Legacy Teen Cancer Foundation.

“I never read in fine print, ‘Be prepared for the unimaginable’ when having a child,” she said. “It’s a very isolated experience because the peers — other parents and other teens — don’t want to imagine this.”

While she sees much value in investing in research, her organization orients upon helping young people who currently have cancer and need to figure out how to deal with life and canter.

“It takes a long time for research results to become useful,” Spiker said. “If you’re a teen or young adult, you need to know right now how to go back to school after being gone six months and now you have no hair and gained 100 pounds. Or how to tell your first boyfriend you can’t have children. Research is so important but for our kids, they have to know how to make their life normal. We feel we do a pretty good job of that.”

Spiker realizes that the difficulties young cancer patients face are different in some important ways than those of people at other stages of life face. Stacked on top of a potentially fatal illness, young people with cancer often feel very isolated at a time in their lives when they typically want desperately to fit in.

“Our mission is to help them live their very best lives today,” Spiker said. “There’s never a good time to have cancer and being a teen or young adult is uniquely difficult. The challenges they face is unlike other age groups. It’s tough to be a healthy teen or young adult to find your sense of purpose. When that’s interrupted, it disrupts the normal trajectory kids are supposed to follow.”

Instead of going along with their friends toward more milestones, they’re sidelined while their bodies, which should be at the healthiest point in their lives, betray them. They also bear the knowledge that some of the side effects of their cancer treatments can cause them problems for years to come or not materialize until years later.

“Their peers are sometimes more important than family for support and day to day actions at that age,” Spiker said. “Their friends’ lives continue the path we expect young people’s lives continue. The friends don’t know how to reconcile and support their friend who is sick.”

Spiker’s organization provides a means of peer support that’s normal for this stage filled with new friends who understand what it’s like to have cancer. 13thirty also offers peer support for parents as well.

“Sharing hopes and dreams with others is extremely beneficial to kids and parents,” Spiker said.

The group offers a peer-community so participants can feel like others understand. The programs include wellness activities and expressive art, such as poetry, sculpting and journaling.

They also provide an opportunity for social interaction.

“It gives them a chance to normalize the most abnormal circumstances they can find themselves in,” Spiker said.

Private grants, general contributions, special events and third-party fundraisers support 13thirty.

The organization also welcomes donations of paper products, non-perishable snacks (preferably healthful), bottled water, coffee, gas gift cards for families who live a distance away and, to purchase printer toner, office supply gift cards.

The organization just opened its second site, the one in Liverpool, to expand its reach into Central New York.

Photo: Lauren Spiker, executive director of 13thirty Cancer Connects, which recently opened in Liverpool. Photo courtesy of Debra Wallace.