In 2007, Hope Nemiroff, the co-founder and executive director of Breast Cancer Options in Kingston, was in bed one night when she got a phone call from a cancer patient in need of immediate help.
The woman told Nemiroff that she has been undergoing chemotherapy treatment, and that her son, worried about his mother was sneaking in every night to sleep on her floor. “When his mother asked him why he was doing that, he told her that he just wanted to make sure she was OK,” said Nemiroff. She wanted to know if Breast Cancer Options had any programs or services for kids. There were none.
“It just bothered me,” said Nemiroff, who was upset enough to call the Omega Institute over in Rhinebeck next to see what it would take to start up a camp of some sort for cancer patients and their kids. “Here we are, trying to help women, and there really is nothing for their kids. It really bothered me.”
Next call was to a social Woodstocker Bob Hausman, a child psychologist at the Woodstock Therapy Center, and his wife Joy, a fellow breast cancer fighter. The Hausmans quickly pieced together programming and experiences with the staff at Omega for the campers. Joy, who was fighting her own battle with breast cancer, knew what the true nature of the unique needs of those kids might be. Within six weeks, Breast Cancer Options offered Camp Lightheart to its list of programs. Joy lost her own fight to breast cancer in 2009.
This is Camp Lightheart’s 11th year of offering a three-day summer camp experience for kids who have a parent diagnosed with breast cancer, or who have lost a parent. The goal of the camp is not to have a three-day, heavy-hearted crying session. Quite the opposite. It is about making friends, contacts, helping kids build resources within themselves, and fun. There are between 15-20 campers every year, between ages 8-15. After age 15, many of the kids choose to return as junior counselors. This summer, camp runs from August 13-16. The entire camping experience is free of charge.
Breast Cancer Options is the largest agency dedicated uniquely to breast cancer in the entire Hudson Valley, and serves Ulster, Dutchess, Columbia, Greene, Sullivan and Orange counties out of their office’s modest square footage space on Hurley Avenue. They have six peer-led support groups, a retreat for women with Stage 4 breast cancer, and loads of other resources, such as discount vitamins and supplements and a 47-page breast cancer resource guide (also found online). Breast Cancer Options offers a Companion Advocate program that matches seasoned cancer patients with newly diagnosed patients, so the new patient can bring along support and experience to doctor appointments.
Nemiroff stressed that the point of the camp is for the kids to relax, unwind and enjoy. She said most everyone chooses to stay in touch with each other through social media, during the 51 weeks “off” from camp. Some years, they have had reunions as well. “At first, I questioned if it was enough, I wondered what difference a three night camp would make,” said Nemiroff. “We have kids who truly bond, who want to share. They want to come back. They stay in touch with each other.”
Talking about one’s own cancer case is challenging enough. But talking about it with your own kids is fraught with unthinkable challenges. Being sick is a lifestyle for a woman, and her children, for the whole family, explained Hausman, who continued to manage the camp after Joy’s death. Their daughter Julia Hausman, who was 6 when her mother was first diagnosed, was part of the founding Camp Lightheart staff as well. This summer, Hausman will be turning it over to Sherry Ou-Yang, a social worker from Red Hook.
Hausman said the message they want the kids to hear is hope. “Breast cancer is serious, and breast cancer is survivable. We try to give them a hopeful message. We let them know on the onset why we are all there. The kids all know that. Then we just do lots of fun camp like things, as well as focusing on that self expression.”
The campers swim, kayak, hike, do crafts and all the rest. These kids more than most, Hausman explained, need a break from their intense home stressors. “Many of the kids come from families who have a lot of pressure of them,” and the kids are often caretaking for either their sick parent or for their siblings, or worrying about things they overhear, or maybe not getting the attention they need.
Camp Lightheart is structured to help the kids develop resources within themselves, such as “slack-lining” tightrope walking exercise, in which a kid walks a low-hanging tightrope, at first holding the shoulders of his or her peers. “It’s a great model of doing something risky and being supported,” Hausman said. Bonding and expression are also transmitted through art work, physical activity, casual conversation, one on one therapy, added Hausman, all building toward enough comfort for a facilitated share session at the end.
Throughout the week kids bond, and talk to each other intimately, or informally. On the final night there is a large group “Sharing Circle,” in which the kids are encouraged to try out the skills they have been working on, and talk about what’s going on at home.
Jessie Casamassima, 22 years old of Millstone, in Monmouth County, N.J. is a junior counselor at Camp Lightheart. She and her younger brother, who is also a junior counselor, lost their mother, Kim Casamassima, at age 47 to breast cancer. The siblings are open with other campers about the experience, as painful as it is. They want other campers to have a sense of hope that it really can be OK. “We want the other kids to know that we went through the worst case scenario, and yet we are still coming back to this, and we are alive, and we are OK, we are still having fun with you,” she said, adding her own belief that the majority of campers will not lose their mothers. “What we try to teach the kids is to have healthy lifestyle and to have control of themselves,” she said. “There is no doomsday deadline. It’s not necessarily the worst-case scenario. They shouldn’t be living with a sense of dread. I can even remember that happening for me.”
Camp Lightheart will run August 13-16, 2017, and is free of charge. To register or for more information, please see breastcanceroptions.org, or visit the office at 101 Hurley Ave., Suite 10, Kingston, or call 845/339-HOPE (4673).
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