What’s the best way to tell a 3-year-old that his mother just had radiation treatment for cancer and that as a result her doctors have advised her not to lie down with him that night?
What do you say to a 4-year-old whose mother is battling breast cancer when she asks why Mommy has all those scars on her chest?
How do you explain that Mommy can’t hug you because she hurts all over?
Those are some of the challenges Adam Bendeson began facing in September 2005 after his wife, Karen, was diagnosed with inflammatory breast cancer, a rare type of cancer.
“At the outset, she was given nine months to live,” he said.
At the time, their three children were 3, 4 and 10 years old. They were living in Smithtown, L.I., and they quickly found that they had to handle this crisis alone.
“My wife was treated at Huntington Hospital, but it had no support group for husbands of cancer survivors,” Bendeson said. “I couldn’t meet with anyone, and my kids couldn’t find other kids like themselves whose parent was battling cancer. My wife was ill and soon she was bald [from the cancer treatments]. … In talking to my kids, I wanted them to understand that there are other kids like them.”
To help make that possible, Bendeson, the executive director of the Suffolk Y Jewish Community Center in Commack, L.I., has started putting together what he believes to be the country’s first day camp for children who have a parent battling cancer, Kamp Hope. Although he has just started to raise money for the camp, to be held next summer at the Henry Kaufmann Campgrounds in Wheatley Heights, L.I., Bendeson said he believes it will strike a chord.
“The number of children to be served will be infinite and depend upon desire,” he said. “I won’t say need, because I know there is a need.”
Nationally, Bendeson said, one in four parents diagnosed with cancer have at least one child under the age of 18. And noting that a recent study found that cancer patients are at a much greater risk for bankruptcy than those without cancer, he said this camp would be offered for free.
Bendeson said he hopes the support network would also take away the stigma these children face.
“My 12-year-old daughter says ‘no’ to doing things after school because she knows Daddy is working and she does not know if her mother is going to be well enough to take her,” he explained.
Bendeson said he envisions Kamp Hope offering three two-week sessions to accommodate everyone through age 18.
“It will be more than a summer camp,” he explained. “It will be a way to bring together children whose families share the unfortunate plight of battling cancer. We’ll need to have grief counselors, social workers, and youth counselors that we will specially train to handle the special needs of these children. What a 2-year-old experiences will be different from that of a 10-year-old.”
Bendeson, a social worker, said he decided upon a day camp experience after realizing “my children will not go to sleep-away camp because if something medically happened to their mother, they wouldn’t forgive me for shipping them off — at least that’s how they would see it. My family unit needs to stay together. A day camp would allow them to go home every night and be reassured that their parents are still there.”
Rabbi Steven Moss, spiritual leader of B’nai Israel Reform Temple in Oakdale, L.I., and for 30 years a chaplain at Memorial Sloan-Kettering Cancer Center, called the camp a “wonderful idea that would be a benefit to the adult who is dealing with the challenges of cancer and to their children who would interact with other children going through the same thing. It’s unfortunate that no similar support groups are here on Long Island.
“Hopefully children in a camp like this would benefit from sports activities and be able to work with a social worker on staff and a rabbi to talk about the important issues they are facing,” he added. “There are a number of hospitals that have hospice programs and many have support programs for the entire family — but they are mostly after the loved one has died.”
Rabbi Joseph Potasknik, executive vice president of the New York Board of Rabbis, also welcomed the new initiative.
“There is a sign that says you never stand so tall as when you stoop to help a child,” he said. “The people starting this camp deserve our commendation and stand very tall.”
Bendeson said he and his staff have begun soliciting grants from organizations and philanthropists to raise the $250,000 they believe will be needed to launch the camp.
“We need an angel who is interested in looking after these children,” he said.
Bendeson said he hopes to start activities in October for prospective campers.
“In that way, we can get a network of families and they will see there are others like themselves to lean on,” he said.
To build such a network, Bendeson said the Suffolk Y would be contacting oncologists, reconstructive plastic surgeons, social workers in hospitals and other professionals who work with adults battling cancer.
“The search will not be geographically limited,” he said. “You could be living in Commack and having surgery in Manhattan at Mount Sinai or Sloan-Kettering.”
Stuart Tauber, vice president of UJA-Federation of New York’s regional offices, said he has spoken with Bendeson about the project.
“He is now identifying the extent of the need and gauging the support that might be available to respond to it,” he said. “There is a need. The question is the scope of the need and what is required. Certainly there are children in need of support, the questions are how many and what level of support is needed.”
Asked whether UJA-Federation might fund the project, Tauber said his organization would issue requests for proposals in the fall and “try to determine what is new and an unserved need. Based upon what he is finding, it will give everyone a handle on how and whether we should respond. There are not enough details now for us to say this is something we should jump on and support.”
Kathy Rosenthal, vice president of Long Island operations for FEGS Health and Human Services System, said she viewed the camp proposal as a “terrific idea” not only for the children but the parent who is serving as a caregiver for his ailing spouse.
“Over the years when we worked with end-of-life cases we often had family members who were caregivers and had children, and it was tough for them,” she said. “Often they were dealing with financial stress that was exacerbated by the illness. Having the ability to send their children to camp would provide respite for them.”
Rosenthal said this camp would be a complement to Camp Sunrise, which is also at the Kaufmann Campgrounds and is for children with cancer and their siblings.
“During the school year the kids are in school and less of a burden on the parents,” she said. “During the summer the kids are often home, and this camp would give them something productive to do.”
Bendeson pointed out that the grief counselors and other professionals at camp would also be there to help answer a 5-year-old who asks: “Why does Mommy have to die?”
For further information, contact Diane Zamansky, the Suffolk Y’s development director, at (631) 462-9800, ext. 116 (firstname.lastname@example.org).