Coping with Childhood Cancer

Providing critically ill kids with a support system.

By Nancy Mariano

“How can my child have cancer? How can this happen to us? How do I keep my job when I’m always at the hospital? How do I make time for my other children? How do I go on?” Friends of Karen hears, and responds to, these questions every day. It is one of the only organizations in the tri-state area that provides emotional, financial and advocacy support to families of a child with cancer or another life-threatening illness, from diagnosis through treatment.

This year marks ten years that the Port Jefferson office of the organization was established to better serve the Long Island community. And Friends of Karen is currently helping 20 percent more families than just one year ago. About one-third of all Friends of Karen families come from Long Island and Queens.

Founded in 1978, the organization has assisted more than 10,000 children. With compassion, dedication and expertise, Friends of Karen helps sustain the entire family unit during an overwhelmingly frightening, confusing and turbulent time. No one should have to deal with childhood cancer alone.

Staff members know the necessary phone calls to make, people to contact, and the most gentle pathway through the ordeal to keep a family together and stable. Through a range of services, Friends of Karen provides the support needed to stay strong throughout an illness. The group also relies heavily on community assistance with finance, skills and energy.

Friends of Karen assists families in whatever unique ways the family members need. Brian and Cathleen of Lindenhurst were introduced to a Friends of Karen social worker in the hospital after their 2-month-old daughter was diagnosed with leukemia. “Friends of Karen is not a one-time, ‘thank-you, we’re done’ organization,” Brian says. “They’re there for your child, for your family, throughout treatment, for as long as it takes. It’s not, ‘Here’s $500, that’s it.’ It’s, ‘Let us help make your holidays brighter.’ It’s ‘Your child’s birthday is coming up. Here’s something special for her.’ The organization is there to help in big ways, but also there to help in small ways. That’s what makes it great.”

Friends of Karen advocates for the family, sometimes intervening with government agencies, medical departments or bill collectors. It guides a family through the endless red tape of medical care and provides a social worker who is readily available to meet with each family member for support. Friends of Karen may also cover transportation to and from the child’s doctor’s appointments as well as bills. Often, the organization is the only thing between a family and emotional or financial ruin.

When their daughter was diagnosed with a nerve-based malignant tumor, Regina and Greg of Bay Shore were devastated. “Everything became too much and we didn’t really know anyone who could help,” recalls Regina. “Knowing we had this care and support helped guide us through a difficult journey. Friends of Karen made all the difference.”

Besides helping with co-pays, Friends of Karen’s offers sibling support where counselors visit patients’ homes to work with the family’s well child who is having a difficult time coping with his sibling’s illness. Fariba and Mike of Miller Place heard about Friends of Karen from other parents. “They said it was a big help when they were going through it,” Fariba says. “He loves when she comes,” exclaims Fariba, regarding their well child. “Friends of Karen does as much as they possibly can, and I don’t know how I can ever thank them.”

One family that wanted to give back for the help it received from Friends of Karen when a son was diagnosed with leukemia played an important role in creating The Walk/Run for Friends of Karen at the Long Island Marathon, the gathering has since grown in popularity each year. Last year, more than 200 people were on the Walk/Run for Friends of Karen team. The 2012 event takes place on May 5 with a 5K and on May 6 with a 10K. Individuals, corporate teams and school groups can join. Non-participants are encouraged to support someone involved. For more information, contact Patricia Conway at (631)473-1768, ext. 303, or patriciaconway@friendsofkaren.org.

Nancy Mariano has been the regional director of Friends of Karen since the opening of its Port Jefferson office in 1991. Reach her at (631)473-1768 or nancymariano@friendsofkaren.org.