“When you’re smilin’, when you’re smilin’, the whole world smiles with you. When you’re laughin’, when you’re laughin’, the sun comes shining through,” sing the kids, as they lock arms and hold each other tightly.
This was the scene as the kids gathered for a group photo at the start of Camp U.O.T.S (United Order of True Sisters) — a one-week, sleep-away camp for children with cancer and blood disorders. The camp is held each year at A.D. (Doug) Barnes Park, 3401 SW 72nd Ave. in Miami. It’s not far from Nicklaus Children’s Hospital, on 3100 S.W. 62nd Ave., where the young patients are treated.
Last month, the 32 campers were ages 7-17, with about half receiving therapy related to their illnesses. They took part in scavenger hunts, aquatic challenges, laser tag, escape rooms, drama games.
Most of all, they came — as they had for the previous 29 years — for the chance to make friends and enjoy relative freedom outside hospital walls. To joke around and just be kids.
“It’s just so inspirational ... They’re smiling through the pain. They’re smiling through the horror of having cancer because they’re just that strong,” says Antonio “TJ” Morales, the vice president of Camp U.O.T.S.
The journey begins
It was TJ and his mother, in fact, who came up with the idea to create what would become Camp U.O.T.S.
At 3 years old, TJ, who was born and raised in Miami, was diagnosed with acute lymphocytic leukemia. He battled the cancer for the next four years, undergoing grueling chemotherapy and radiation treatments at Miami Children’s Hospital (now NCH) and Mount Sinai Hospital in Miami Beach.
When he was 5, TJ was granted a wish by the Make-A-Wish Foundation. His ask? To meet Goofy at Disney World.
“It was such a powerful and impactful experience for our family and it was really healing,” TJ says. “We could just forget about the reality of my sickness and have fun together.”
Then his mother, the late Giselle Morales, wondered, “Why can’t we do this for kids? Each summer, why can’t we have a summer sleep-away camp that’s free [...] so that we can bring them together and give them a week’s worth of fun summer camp activities and memories and joy and love and laughter that they can remember for a lifetime?”
The older Morales was an educator who taught reading, math and science to middle schoolers for over 15 years in Miami. And she reached out to others to make her vision for the camp a reality.
Among those who would become her powerful ally: the late Eve Ruthfield, who was president of the Miami chapter of U.O.T.S. Over the years, the group had raised millions of dollars for NCH. The United Order of True Sisters, a national women’s group that has deep roots in Jewish philanthropy — the original organization was founded in 1846 in New York — focuses on raising money for cancer research and providing support to cancer patients.
The Miami chapter, under Ruthfield’s leadership, then created a foundation at NCH that established the camp.
And in the summer of 1991, shortly after he conquered his own cancer, 7-year-old TJ was the first to enroll at Camp U.O.T.S.
Fun activities to remember
When it began 30 years ago, the camp offered only basic activities such as hiking, singing beside the campfire, talent shows and the occasional outing to go bowling.
Since then, its offerings have become much more expansive. In pre-COVID times, a three-day trip to Universal Studios in Orlando was on the itinerary, for instance, as were indoor skydiving, museum visits and swimming with dolphins. And boat trips.
“I’d say probably one of my more memorable camp activities ... was when we went to the Bayside marketplace and get on a cruise boat ... and have a DJ that was playing nonstop music ... and we’d all be dancing for two hours, three hours straight on this boat, it was almost like a private party boat,” TJ. recalls. “I think that’s one of the most fun things because it’s one of the activities where everyone really just lets go, has fun, releases any inhibitions and just enjoys being silly and goofy.”
Lana Chehabeddine is another former camper who remembers the cruise-boat parties very well.
“For two-plus years, I was in a hospital gown,” she says. “So getting to look nice and go out on this really cool boat with a lot of music and dancing with all these people was a highlight for me.”
Lana was 10 when she first attended camp. And like many others there, she had endured a traumatic few years:
During a third-grade school field trip to the local fire station two years earlier, she had thrown up and was taken to the doctor. Blood tests showed she had leukemia. Lana underwent intensive chemotherapy for a year at the Chris Evert Children’s Hospital in Broward County (now the Salah Foundation Children’s Hospital), after which she was declared cancer-free.
A year after, the cancer came back and she had more chemotherapy, full body radiation, and a stem cell transplant from her sister at NCH. She was under the care of Dr. John Fort, another early physician champion of Camp U.O.T.S..
Lana didn’t realize how severe her condition was until she stumbled upon a pamphlet for parents with children diagnosed with cancer. “I read the statistics about the likelihood of survival with my specific kind of cancer and at that point, it really hit me. Like this is real.”
She recalls being particularly disturbed when she was told that she’d lose her hair as a result of chemotherapy: “I was insanely upset by that news because my hair was my most cherished thing to me as a kid.”
For nearly two years, Lana was hospitalized.
“In the hospital, I was completely isolated ... every child is in their own special room and you do not interact with other patients ... I never really got to chat and hang out with other cancer patients and become friends with anyone.”
But at Camp U.O.T.S., with friends around her, she thrived. And the self-described “ex-roller coaster maniac” went on to become a counselor for a decade after her camping years ended.
Lana, now 29 and a resident of Coconut Creek, is now a researcher and writer for the Florida Food Policy Council.
Bonding with campers
Dr. Athena Pefkarou, a pediatric hematologist-oncologist with KIDZ Medical Services at NCH and TJ’s primary physician when he was a child, was among the program’s champions. Pefkarou took over the camp’s helm in 2001 and is still the camp’s director.
Pefkarou stresses that the camp wouldn’t have been possible without the help of countless nurses, physicians and volunteers over the years: “I could not do anything without this team of dedicated people.” Currently, Pefkarou has a team of six nurses, four doctors and two child life specialists. There are also 22 camp counselors, of which 12 are cancer survivors and previous campers.
Among the volunteers is Ms. Deborah Salani, an associate professor in the School of Nursing and Health Studies at the University of Miami and a pediatric nurse practitioner who has been involved with the camp for over 25 years. She originally heard about the camp when she was working in on the cancer unit at NCH as a clinical specialist.
“The kids are just an inspiration ... they’re really resilient,” Salani says. “And it makes you appreciate life and it’s my way of giving back. ...
“A lot of the kids will come with their wigs on or maybe a hat because a lot of them are bald and, within a day or two, they just feel so comfortable with everybody and that they’re not alone, that they lose their hat or their wig ... I think it’s really a testament that they feel comfortable there and safe ... I think that’s pretty radical.” .
Salani vividly remembers a camper one year who she had to take to the hospital for a treatment before a camp-sponsored excursion to Disney.
“He thought it was the coolest thing to be driving in my car with me ...and I had shorts on. Like that was just so cool to him. Because they don’t see you in that light.”
Dr. Zaid Khatib, the director of hematology and oncology at NCH, who volunteers with the camp on occasion, echoes her sentiment. “I remember having a great time when I participated in one of the water parks ... I was happy to put on my swimsuit and camp T-shirt and just jump in with the kids on the roller coasters and water rides and create a good rapport with the patients that we take care of.”
‘We want these children to feel loved’
Pefkarou states that experiences like these are one reason Camp U.O.T.S. was founded: “We want these children to feel loved because in our eyes, they’ve been given a very, very restricted lifestyle. But we felt that they deserve to be as normal as possible: to go back to school and participate in activities.”
The most important thing the camp provides its campers? It’s hope, Pefkarou says.
“If this camp is important for anything, it’s that the kids who go there leave with the belief that they’re going to be healthy one day and that they’re going to enjoy life like everybody else.”
That being said, Pefkarou notes that not all of the campers are so lucky. “There will be at least one or two participants each year who are children who are going to die. And for those children ... we make sure we give them the most memorable and happy time in their life.”
But the memorable experience goes both ways, says TJ Morales, 38, the former camper who’s now the camp’s vice president.
His loyalty to the camp remains strong, even though he no longer even lives in Florida. Morales, now in Los Angeles, works for Lyft, helping it forge strategic partnerships with other companies to improve the Lyft ridership experience.
Campers often have a profound impact on volunteers, Morales says.
“It really helps grant perspective on life ... These young boys and girls are going through the battles of their lives. And they’re smiling and dancing and playing and just enjoying life every day they’ve got. It’s so inspiring to see that.”
About Camp U.O.T.S.
What it is: Camp U.O.T.S. is a certified 501(c)(3) nonprofit organization offering a week-long, sleep-away camp for pediatric cancer patients at Nicklaus Children’s Hospital (NCH).
Where: It is based at A.D. Barnes Park, 3401 SW 72nd Ave.
When is it: A designated week in late July. This year, it was held July 23-29.
How many campers: Numbers vary. This year. it hosted 32 kids ranging in age from 7 to 17.
Cost to enroll: It is free for the children.
Budget: U.O.T.S. -Miami #43 created a foundation at NCH that established the camp. That foundation still continues to help the camp, even though the Miami chapter has been dissolved. The camp also relies on other donors and contributions for its funding. It costs approximately $60,000 to run Camp U.O.T.S. each year. Half of these funds come from the endowment left by U.O.T.S, and the other half comes from volunteers and families who fund-raise throughout the year. All camp workers are volunteers, and all donations made to Camp U.O.T.S. directly cover expenses related to activities and supplies.
For more information: Go to www.campuots.org
Any donations can be sent directly to www.campuots.org/donate