A place in the sun

A place in the sun

The JCC on the Palisades' Camp Dream Street offers children with cancer and their families normal summer fun

The whole camp gathered last summer. Pearl Seiden, in a blue shirt, is front and center.

A group of middle-school girls were getting ready to leave a lunchroom at the Kaplen JCC on the Palisades in Tenafly. One of them was bald.

That’s why another girl just came right out and asked her, “What’s it like to have no hair?”

Lisa Robins, director of Camp Dream Street, remembers stopping mid-stride after hearing the questioner ask the bald girl if she could touch her head. Ms. Robins feared that this could turn into a bullying incident. She had to hear where the conversation was leading.

The bald child consented. The other girl touched her head and said, “It’s so cool. It’s so smooth! Do you wear sunscreen on your head?” No, the first girl said; but her mother made her wear a hat.

“Everything was cool and neat, and the other girls were asking questions not in a mean-spirited way,” Ms. Robins said. “And then another girl in the group put her hand underneath her wig, removed it, and said ‘I’m bald too.’ The girls all skipped away together. And that second girl – she never wore a wig to camp again.”

These are the kinds of stories that come out of one August week at the Tenafly campus.

Ms. Robins has seen a visually impaired camper lead a nature walk. She watched, laughed, and then cried as a tall, strong staffer carried a blind camper through an obstacle course, simply because the camper so wanted to do it.

This year’s one-week session is scheduled for August 18 to 22. The free camp is open to children battling cancer and their siblings. Why the sibs? Because, as the camp’s founder, Pearl Seiden, said, “They are often passed around to friends, grandparents, and neighbors while their sick brothers and sisters are getting attention.” In its opening year, it drew 20 campers. This year, nearly 200 are expected.

Ms. Seiden said that about 45 percent of the campers in any given year have cancer or a blood disorder. The rest of the campers are siblings.

Ms. Seiden’s father, Norman Seiden, was one of the JCC’s founders, and she served as the institution’s president from 2010 to 2013. Her ties to it are strong.

So when she watched a childhood friend die at the age of 29 from cancer, she immediately thought of the JCC as a place that could help.

“I watched what he went through,” she said, “I was chair of special services at the JCC; I was an occupational therapist. It just fit together.”

The late Lowell Zimmer, who was the director of the JCC’s cultural arts department for many years, and Ms. Seiden started the program, then called Camp TLC, in 1989.

In 1990, Avi Lewinson, now the JCC’s CEO, came to Tenafly as the assistant executive director. He had come straight from Los Angeles, where he ran Camp Dream Street at another JCC, and based on that relationship, he secured a $10,000 grant for Camp Dream Street, a grant it has received every year since. The grant is from the Dream Street Foundation, a California-based foundation that provides grants and funding to enable chronically or terminally ill children to go to camp.

Before the program began, Ms. Seiden had learned that pediatric cancer patients at Hackensack University Medical Center could not attend a conventional camp, because they were often in the middle of treatment.

“They weren’t battling cancer,” she said. “They were living with cancer.”

She would meet with Dr. Michael Weiner, a Hackensack University Medical Center oncologist. The two brainstormed about what could be provided in terms of fun and friendship for these children.

The idea for the camp was born.

So Ms. Seiden, who lives in Franklin Lakes, approached the hospital and asked authorities if they could establish a day camp for the young patients. “We’d have medical staff to make sure the kids were fine,” she said. “They could go to the hospital and come back to camp if necessary.

“And then we thought about the siblings. They were the ones left behind with other people while their parents went to the hospital. We wanted to have the children with cancer and their siblings together at a camp as opposed to being together in the hospital. We wanted them to have a normal environment, not one that involved sickness.

“So it started as an idea, and that first summer we had 20 kids and as many counselors,” she continued. “We had to prove to ourselves that we could do this. We needed the confidence of the staff and the parents. We had doctors and nurses there. It was unbelievable.

“These children needed to be able to come to camp,” she continued. “And it needed to be local, because their parents were not willing to let their children go to sleep-away camps. Sometimes they could only come one day, and then miss two days because they needed to be back in the hospital. But we provided medical personnel at camp to have a medically safe environment. We just wanted them to be able to come to camp and have fun.

“This is my dream,” she said of the camp. “This is my baby. Of all the things I’ve done in my life, this is what I am most proud of. It grew, because everyone who was a part of it embraced it. We are a huge family. In the years we’ve had Camp Dream Street there have been over 1,000 volunteers taking care of over 1,500 children.

“You just do it once, and you see the children, and you can’t walk away from it after that,” said Ms. Seiden. “You just see how camp brings life to these children. It became a labor of love. Every year we improve it. The camp is constantly evolving; we’re still working to make it better.”

The JCC, the Dream Street Foundation, the Children’s Hospital of New York Presbyterian, and Tomorrows Children’s Institute of Hackensack University Medical Center sponsor Camp Dream Street.

The camp takes everybody. Jewish, gentile, white, black, Hispanic, Asian – it just does not matter. Campers can be from 4 to 14 years old.

“We don’t take everybody,” said Ms. Seiden. “Clearly people have to have cancer, or a blood disorder, and have to be approved by a physician and the medical staff of Camp Dream Street. They also have to be well enough to attend, well enough to get through the day.”

The campers are patients at Hackensack University Medical Center, Saint Joseph’s Regional Medical Center in Paterson, New York-Presbyterian, and Memorial-Sloane Kettering. But the campers can come from other hospitals as well, and they have.

Sometimes the hospitals that treat the children refer them and their families to Dream Street. Other campers’ families hear about it through word of mouth, from other families with a sick child.

Ms. Seiden said that the camp had to create a schedule that was appropriate for the campers. The day could begin with a sports activity. But summer heat is a factor that must be considered. Some of the children have been weakened by their illness and treatment, so the next activity usually would be quieter – perhaps arts and crafts.

“We worked with the doctors to create a schedule,” Ms. Seiden said. “We learned together along the way that we had to be incredibly flexible every step of the way. You could have the best schedule, but you never knew if the children would need to rest more or even return to the hospital.”

Then there were many times when the children surprised their own doctors.

Ms. Seiden remembers Samantha, a feisty 7-year-old, who already had suffered a stroke and was diagnosed with sickle cell anemia. The medical team reminded staffers to consider her frail condition.

But those medical personnel “saw the kids in a sick environment,” Ms. Seiden said. “They didn’t see them in a camping environment.”

One of Samantha’s legs was in a brace and her left arm was immobile, because of the stroke, Ms. Seiden remembered. But she got off the camp bus, “took a look at the camp, and then just started running.

“There wasn’t anything she wouldn’t try and wouldn’t do. These children always do much better than we think they’ll do,” she said.

Ms. Seiden said that there have been medical advances since the camp opened, and many of the children are able to come to camp with fewer medical restrictions.

“They can have chemotherapy through a pill, an injection, or IV,” she said. “They can have a port installed for meds.”

Ms. Seiden said that for the camp’s first 15 years, “our children were actually more ill than they are now. Part of the reason was chemotherapies weren’t given like they are today. Today it can be done in a couple hours of infusion. It used to be a treatment of a couple of days. We also didn’t have medicines back then like we do now to keep the children from being nauseous from their treatments.”

She added that in the earlier camp years, children came to camp with a tube embedded in their chest for infusion, and that tube had to be protected from physical contact. Now the patients have a port implanted to receive their infusions, which are much less vulnerable to damage than an exposed tube. There still are no body contact sports or camp activities.

Over time, the camp has seen an increase in campers with blood disorders, such as leukemia or sickle cell anemia.

Her biggest thrill “is when I see teenagers who were once our campers coming back here to be counselors,” Ms. Seiden said.

Many of the counselors are either JCC members or former campers. Counselors are 16 and older. The new counselors typically are nervous as they go through pre-camp orientation. They are selected through an interview process conducted by Ms. Robins, the camp’s director.

“Within hours they bond with these children,” Ms. Seiden said.

Through the camp’s first 24 years, more than 1,000 teenagers have volunteered.

“Many have chosen careers based on this experience,” she continued. “Some have become doctors or are involved in counseling for sick children.”

At the camp, the children don’t have to worry about how they look, or whether they are in a wheelchair.

Maggie Rogers of Jersey City knows all too well about Camp Dream Street. When she was 4 ½ years old she was diagnosed with stage 3 Wilm’s tumor, a rare kidney cancer.

Now, at 24, she can remember “the good things,” because they happened for her at Camp Dream Street. By the time she was 6, she was cancer free.

“There are other kids who are like you,” she said. “You can just be a camper and play like a normal kid.”

She became a Dream Street counselor at 16.

She does not bring up a camper’s illness unless the camper wants to talk about it.

“It’s like the only place where they can go where people aren’t going to stare at them,” she said.

Ms. Rogers has a surgical scar from her cancer. She doesn’t bring up her own past illness unless a camper asks. That did happen once. She was getting dressed after a swim, and one of her campers saw the scar. It was then that she explained to the camper where the scar came from. Ms. Rogers said the camper understood and the two felt a bond after the short exchange.

“We have an orientation and get assigned to a group,” Ms. Rogers said. “We as counselors learn about the campers’ health issues. We role-play on how to calm a child. They are not feeling the best, and a lot of the kids don’t know each other, so it’s kind of scary. At the beginning of the first morning, the counselors feel overwhelmed. At the end of the first day, you feel like you’ve been there a week.”

Ms. Rogers is graduating this year with a master’s degree from Rutgers in epidemiology. She wants to continue her research in infectious diseases.

Ms. Robins, Dream Street’s director, who lives in Leonia, had not planned to work at the camp.

She was registering one of her three children for another JCC camp when she inquired about a part-time job. At the time, she had no qualifications, she said. But she was lucky. A new program called Camp Dream Street needed staff. “I fell into the job,” she said. She’s been there for 12 years now.

Ms. Robins begins preparing for camp the next day after the previous season ends.

“I have to,” she said. “Four to 14 is a huge age range. It’s unpredictable.

“All the campers with cancer or a blood disorder need a medical clearance,” she continued. “We have medical staff and we have a child life specialist dealing with behavioral issues we might encounter. We find that often it’s the siblings who are the ones who come with behavioral issues. They melt down in the middle of an activity.”

Camp is not about what the kids can’t do, she continued. Instead, the focus is on what they can do. “If they can’t swim, it’s no big deal.”

Ms. Robins said that everyone expects campers to be nervous when the buses first show up on Monday. On Friday, though, when the week of camp comes to an end, she cannot get anyone to get back on the bus.

“Everyone is hugging and taking pictures,” she said. “That for me is the sign that it was an incredible experience.

“I have moms who come here as counselors. I have senior citizens. We have high school students, college students, and young adults who come back here every year to serve as counselors. These peoples’ paths would never come together if not for Dream Street. I have kids from the inner city playing with wealthy children from Alpine. I try to keep it together, but I always end up losing it. A hug from a 4-year-old sweaty wet kid is so delicious.”

Ms. Robins has also been to too many campers’ funerals. At a recent funeral, a poster filled with his Dream Street posters was displayed near a child’s casket, she said.

Her husband, Robert, is the camp cook, and her two adult daughters have held various leadership positions there. Her son, 15, is a year too young to be a counselor, but he’s grown up at the camp.

During the year, Ms. Robins spends a great deal of time filling out community service forms for high school-age counselors. She has volunteers who are in college, and other who are in medical school. “They study all summer, and when they take a vacation week, it’s at Dream Street,” she said. “We have families who have rearranged their vacations so they can be here to help out. Once you experience a Dream Street week, you get hooked.”

Lavinia Rodriguez of Paterson wishes she never had any reason to know about Camp Dream Street.

When her son, Manny, who then was 3 ½ years old, couldn’t shake a fever in the winter of 2009, she took him to nearby St. Joseph’s Hospital.

He was diagnosed with leukemia. Soon, she found herself taking Manny for his first chemotherapy treatment. She saw other children there, who had lost their hair.

“I was still in denial,” she said. “When I saw those bald kids I was still saying, Manny can’t have cancer, it must be something else.”

For 3 1/2 years, Manny was treated with radiation and chemotherapy. Mrs. Rodriguez estimated that her son spent 75 percent of 2009 in the hospital. Her 1 1/2-year-old son, Emilio, “was passed around” to relatives while she and her husband, Rudy, spent time at the hospital. With his immune system compromised by the chemo, Manny suffered from a bacterial infection, MRSA, and an intestinal disorder, E. coli. He also had difficulty tolerating the chemotherapy. Still, in May, 2012, he went into remission.

“It’s better now,” Ms. Rodriguez said. “In some ways I’m glad we went through it. It’s given me a different kind of life.

“I mean – I wish we didn’t have it, but I wouldn’t have met such great people and such great places like Camp Dream Street.”

Ms. Rodriguez said that when she first heard of the camp, she wasn’t sure she wanted him there without her. She was afraid he’d get hurt. When your child has cancer, she said, “you don’t want to let him be away from you at any time.

“There was a bus available to take him, but I had to drop him off,” she said. “And when I did drop him off that first day, I went directly to Lisa” – Ms. Robins – “and started crying. She told me that Manny would be fine.”

A counselor who was a cancer survivor took Manny under his wing.

“Camp Dream Street makes everyone feel very special,” Ms. Rodriguez said. “They love him there. When my little Emilio went there to be with his brother, he loved the camp just as much as his big brother.”

Manny is now 8 1/2, and his kid brother is 6 1/2.

Jessica Janneck of Emerson, 19, who is a Johns Hopkins University student and a Dream Street counselor, has learned from her campers. “Don’t complain about the small stuff” is a prime lesson, she said.

“I’ve had children say to me, ‘I had heart surgery when I was little’ or ‘I have a port because I have chemotherapy and I need to cover it up during sports.’

“They tell me things. But I’ve learned so many different things from my campers. I’ve learned that it’s not necessarily the words you say, but it’s the way you treat one another that counts. I think sometimes that is lost.”

Leslie Figuero of Paterson, 17, had not been treated kindly at school.

Diagnosed with leukemia at 11, she spent all of sixth grade and half of seventh away from school, weakened both from the disease and the treatment. On her first day back to school, a classmate pulled off her baseball cap, and “everyone laughed at me because I was bald,” she said.

“I learned something that day,” she said, her voice shaky and soft. “You can’t let people tackle you down. You have to rise up.

“I remember when I had cancer I felt like a weirdo,” she continued. “I felt like I wasn’t in my place.

“Camp Dream Street opened my eyes. I began to see clearly. The camp is my family.”

Ms. Figuero now is a Camp Dream Street counselor. She has the rest of her life planned. She wants to go to nursing school to become an RN, although she doesn’t know where yet. But for one week every summer, she knows exactly where she’ll be.

Ms. Robins does pay her staffers. Many times, though, she gets envelopes from them. She opens the envelopes, and the paychecks tumble out. Those staffers who return their salaries say they would rather work for free. They are thankful for the experience, and want the money go back to the camp.

“Each year, there’s a remarkable story about a camper who did something we never thought he or she could do,” she said.

She was asked if there’s one story she could tell to sum up the experiences she has had.

It gets quiet for several moments on the phone, almost as if the call was dropped.

Finally in a barely audible, emotional voice she says, “I don’t have just one.”

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