Infusing sick kids with magic

Infusing sick kids with magic

Ohr Meir takes sick child, Englewood counselor to Disney

Everyone gathers in the Magic Kingdom. The trips are free; every child has his or her own counselor, and a support staff backs it all up. Everyone who works on the trip is a volunteer.
Everyone gathers in the Magic Kingdom. The trips are free; every child has his or her own counselor, and a support staff backs it all up. Everyone who works on the trip is a volunteer.

In general, discrimination is a very bad thing.

But if only cancer would discriminate against children! If only we could live in a world where, as scientists valiantly try to vanquish cancer entirely, at least it stayed away from kids.

We don’t live in such a world. Children get cancer; they get depressed and scared, they have to retreat from friendships, from school, from the outside world; it hurts; treatments also hurt; they have to face great uncertainty; sometimes they die.

These are terrible truths, from which these children and their siblings cannot always be shielded.

Parents try to protect their children as much as they can. That’s the most basic part of a parent’s job description. They do what they can. Sometimes they can’t.

And sometimes, just sometimes, they can take their own pain and grief and turn it into something positive.

There’s a face painter available every day for both kids and counselors.

That’s what Idy and Ari Friedman of Flatbush did 26 years ago, when their son Meir died. He was 11, one of seven siblings. His parents created Ohr Meir, an organization that takes children either actively in treatment for cancer or in remission from it, on an all-expenses-paid, no-holds-barred trip to Disney World. Their theory, which they have seen proven over and over as the trip grew and grew, is that as much as all children can use magic, children fighting cancer need it even more.

At the end of December, an 11-year-old suffering from a rare childhood cancer went on Ohr Meir’s four-day trip to Disney. As always happens, she was accompanied by a counselor. Usually they’re assigned — usually through Chai Lifeline — but this child was able to go with someone she already knew.

Her counselor was Elana Sichel of Englewood, a 21-year-old University of Maryland junior who’d already devoted a great deal of energy, time, and love to her.

Now, Elana tells the story of the trip.

Elana’s the daughter of two doctors, Eric Sichel and Dana Cernea, the third of five children, a graduate of Moriah and SAR who spent her gap year at Midreshet Torah v’Avodah in Jerusalem. When she was in high school, she babysat for Evan Levy, who died of brain cancer when he was 4 and she was a senior. “I was very close with the family even before Evan was diagnosed,” Elena said; she was devastated by his death, but for her, devastation is best dealt with through action. “Even before Evan died, I became very involved in childhood cancer,” she said. “So I decided to do a fundraiser on my birthday. It lasted for 24 hours; I wanted to see how much I could raise.” She’s done it three times so far, starting when she turned 15. The first one was for Zichron Menachem, “for children with cancer in Israel. I was like, ‘This is a way to connect to Israel,’” she said. The next year, “I did the same thing for Cookies for Kids’ Cancer, an American organization that does bake sales to sponsor more research for kids’ cancer.” The money that she raised on her 17th birthday went to Chai Lifeline, which provides camping experiences to children with cancer.

She also worked as a counselor at Camp Dream Street, the summer program for children with cancer and their siblings at the Kaplen JCC on the Palisades in Tenafly, and was an intern at Hackensack Hospital, again working with children with cancer.

As she pursued her interest in children with cancer, all stemming from her closeness with Evan Levy and his family, and no doubt nurtured by her parents’ work in medicine, she started down the rabbit holes of the internet, trying to see what she could find. “I started following a lot of cancer blogs on Facebook. At the beginning, it was definitely hard; you come to know some of the kids through the blog, and often they pass away.”

Counselors and campers develop bonds that last well after the trip is over.

One of the Facebook pages she stumbled across was about a local child who’d had cancer since she was 3 1/2. Elaena “began reading months and months of their journey,” she said. Eventually, she got in touch with the family, and she built a relationship with the little girl, one hospital visit at a home. The family’s situation made relationships hard to maintain — a not infrequent consequence of childhood cancer — and Elana became a constant in a world not awash with them.

She told the family about Chai Lifeline. That group provides a lot of support in the lives of the children it accepts, Elana said; “once you reach out to them, they take full control; then they sent over a case manager, and got things started.”

The family did, and Chai Lifetime went to work. Among many other substantive help, it arrange for the little girl to go on Ohr Meir’s trip to Disney. “And she said, ‘I am very nervous about it,’” Elana recalled. “She said, ‘I wish we could have gone on the trip as a family. I know how it works, I know that she can only go with a counselor, and I trust them, but I’m really nervous.’

“And then she said to me, ‘It would be amazing if you could go.’

“So here I am. I have finals in a week and a half. I wasn’t sure what to do. I went home to talk to my mom and reach out to the case manager and the person who is in charge of the staff at Chai Lifeline.

“I offer to do what I can do, but I know that the chance of them taking me is so slim that I expect nothing to come of it.

“But the email that I sent was emotional, and within 24 hours of getting back to school I get a phone call saying, ‘We want to talk to you.’”

In the end, Elana went to Disney World. It was hard — she talked to her professors, who allowed her to take her finals early. “I had to take four of them in two days,” she said. It didn’t go well. “I am a very studious person. I care about my studies. For the first time, I did terribly.

“But my perspective is that these grades will not be the end of me, and I would remember the trip for the rest of my life.”

The little girl loves Harry Potter; because her family is trying to shower her with everything she loves while there still is time, she had gone to see her idol on Broadway. She was in a great deal of pain and wasn’t at all sure that she could handle the trip to Disney, but when she was told that Elana would go with her, she decided that the trip was on.

“I was a little nervous,” Elana said. “On Thanksgiving when I saw her, she had a little trouble walking, but now she couldn’t walk. She was in a lot of pain. Even getting from the wheelchair onto the plane was nerve-wracking.”

Each camper is sent home with a personalized album with photos like this one.

It’s the counselor’s responsibility to give the child medication. Elana’s charge needed in every three hours. “I set alarms for myself every two and two-and-a-half hours,” so she’d wake up in time,” Elana said. 

But “this organization” — Ohr Meir — “is unbelievable,” she continued said. The children ranged from 4 to 21 years old; most were American, from across the country, “but two were charedi, one was Israeli and didn’t speak English, and one was from London.” They are all Jewish, but from a range of backgrounds. There were 25 girls and 25 boys on this trip; two full buses, divided by gender, with kids-and-counselor pairs, plus doctors, nurses, and organizers, plus a fleet of backup vehicles.

When the trip began, 26 years ago, it just went to Disney. Now, it starts at Sea World, and “it was very exciting,” Elana said; that night, the dinner had a Mickey-and-Minnie theme. “Everything was Mickey and Minnie and the food and the dinner venue was all completely decked out in Disney,” Elana said. “There was a candy station. Everything was kosher.”

Every night, there would be something new on the kids’ beds. That first night, it was more Disney regalia.

The start of the second day “was one of the most unbelievable things,” Elana said. “A magical toy store.” The kids used to go to Toys R Us and pick out whatever they wanted, she said; now that Toys R Us has closed, “they take the largest ballroom in the hotel and turn it into a toy store. They partner with Target, and old Toys R Us employees come back. There is real shelving and each kid gets a fake credit card, and they get a shopping cart. The kids choose whatever they want, there is a fake checkout, and then the toys get shipped home.

“There was loud music, and there was a train going around the room. It was crazy.” The whole thing lasted about an hour and a half.

There is a mock toy store; everything in it is free and shipped home.

“From there, we went to Universal’s Islands of Adventure,” Elana said. “Another great day in the park.” Next was Harry Potter World, but her patient was in too much pain to go, “although we got the wand and the costume,” Elana said.

At that point, “I second-guessed myself,” she continued. “Should we have flown back early? I thought, though, that even with the pain, the activities and the excitement were useful.”

The next night was superhero night; superheroes and superheroines, in costume, from the parks, showed up at dinner.

“And the next day was a great day,” Elana said. Ohr Meir rented out a Dave and Buster’s video arcade, “and we were there for two hours, playing games, earning points, trading them in for prizes. The kids were really happy.

“And from there we went on to the Magic Kingdom, which was really exciting.”

As she talked about the trip, Elana was straightforward. Not everything was wonderful; the responsibility was huge, the little girl’s pain and struggles were hard to watch, and the future is unclear. But the occasional joys were real, and fulfilling for both of them.

“I was scared to sleep at night,” Elana said. “You want to be in the best mood for the kid, but it is emotionally draining.

“But when we got to Disney…

“She loves two things most. One is Harry Potter, and the other is Stitch,” the blue koala-ish, puppyish character, half of Lilo and Stitch. On the day of their Magic Kingdom trip, “she was dressed in straight Stitch, and I dressed myself up as Stitch. When we got to the Magic Kingdom, the first thing we did there was see the classic Disney parade. We were all very into it. We had VIP seats, and the kids were laughing and smiling and she was really excited.”

The park employees, there as everywhere they visited, were loving. “Stitch got down on his knees, talking to her and snuggling with her,” Elana said. “It was unbelievable.” Later, the little girl talked with you about “how Stitch hugged me and kissed me.”

Then “it was the last night, and the grand ball.

“When we got to the hotel, the two founders” — that’s Ari and Idy Friedman — “came out dressed as a king and queen, to invite us to the ball.”

There were costumes on their beds in their rooms, “and each kid goes down the red carpet and was introduced,” each one as a king or queen.

“We were sitting with older kids, and I tried to get her to interact. All this was new to her, and she was in pain, and it was hard to get through to her. But I think that she likes older kids, and there was this 19-year-old and a 20-year-old talking to my camper, talking about when they lost their hair, bonding over doctors.

“It was amazing seeing them bond like that.”

Then everyone went outside for a private fireworks display.

The next day — the last one — the group went to Universal Studios. It was a good day. Her patient “was with her new friends, and she was really excited,” Elana said. “She hadn’t wanted to go on any rides before, but that day she went on five rides.”

When the trip was over, Elana felt a complex mixture of relief and sadness. She’s become friends with some of the other counselors, and her bond with her patient is even stronger than ever.

The whole trip was an intense experience, Elana said, “and I’m still processing it. I’ve been questioning why I did it, for a girl I didn’t know that well then, and who now is like my little sister.

“It comes back to I would like to have this kid enjoy this last experience. And miracles do happen.

“This builds my character. It reminds me of why I do what I do. I know that it definitely was the right thing to do.”

The trip’s creators, Ari and Idy Friedman, turned their grief for their son Meir into helping other kids with cancer.

She doesn’t want to become a doctor — she’s studying business — but “I want to help people,” she said. That’s why she wants to go into HR. “My mom is amazing,” she said. “She really cares about people, not just as a doctor.” She also cares about people, “and I love building relationships.

“It’s okay being emotional,” she added. The trip was inherently emotional. How could it not be? And that’s okay. “The process is important.”

Idy Friedman said that Ohr Meir — Meir’s light — came out of what she saw as her son Meir died. “Winter is long, and kids with cancer are not allowed to be with their friends, because their immune systems are low,” she said. “It’s very depressing, being at home alone, and the chemo, and the needles.” So after Meir died, in their grief, “we were looking to give other kids energy and the will to live.

“We wanted fantasy. We wanted magic.”

They thought about taking children with cancer to Disney.

So they talked to two of Meir’s doctors — and not only did those doctors not try to talk them out of the idea, they insisted on joining them, and have accompanied the trips ever since.

Steven Friedman is 28. He’s one of Idy and Ari Friedman’s children, and he, like his siblings, most of whom also have day jobs, is deeply involved with the trip.

His non-Ohr Meir job is as a businessman, Steven said; his real skill is creating experiences. Each of his siblings has a special skill, and each one contributes that skill to the trip, he added.

“Everyone on this trip is a volunteer,” Idy said. “They put their hearts and souls into it. They take four vacation days from work, and they work for four days straight. You couldn’t pay someone to do that. It’s people with the greatest heart.

“We work on it to some extent year-round,” Steven said. “We have been gifted with these superhuman skills by the One above.

“We are a pretty talented bunch.”

He loves solving the problems the trip poses. “The trip is my sandbox,” he said. “I get to play. I get to make something that is an impossible fantasy. My job is to do the nitty-gritty of the fantasy side.

“How magical it is. How mind-blowing. Over the years, my parents had the idea that they could make this organization to carry on Meir’s light.” They started with Disney — and then they kept adding.

One element that makes him particularly proud is the personalized album that each child is given. A staff member spends many hours, basically all night every night, combing through the thousands of photos to compile the best for each child. The child takes it home; parents report that their kids love to page through them and remember.

The trip involves a huge number of such details, Steven said. A huge range of details. The kids and their families have to do nothing, which means that the volunteer staff has to think of everything.

“We have a surprise in every corner,” he said. “Every single part of the trip has a theme. We have no overhead, and we are incredibly careful with every penny.” Much of what they get is donated, but they also have to pay many things. The kids, though, pay for nothing. The meals and entertainment are lavish; the giveaways are enough to thrill any kid. But that’s because many of these children with cancer have limited horizons.

At dinner the last night, each child is introduced formally and individually; the carpet is lined by costumed counselors.

Not all of them, though. Some kids don’t make it, but others do. “We feel like the mother and the father on the trip,” Idy said about herself and Ari. “I always walk around and say, ‘You are going to come back as a counselor when you are 18.’” And sometimes that happens. On this year’s trip, three counselors who had been campers at different times met and now have become close friends. “I like giving teenage girls these counselors, because it gives them hope,” Idy said. “And we get invited to a lot of weddings. Can you imagine — 10 years after the trip, you are invited to a wedding?

“We got invited to a bar mitzvah, the son of someone who was on our first trip.” It was in Cupertino, California. They went. “It is so good to know that we made such an impact,” Idy said.

“When my parents started this trip, from the inception, they decided that a Jew is a Jew, and we want to help everybody,” Steven said. “It is beautiful.” Everyone’s Jewish, but they range from chasidic to unaffiliated. The food is glatt kosher, with hechshers acceptable to the most frum families. “And you see everyone interacting. They get to know each other, because they share a common situation.”

Chai Lifeline refers many of the children and the counselors to them; it does some of the vetting, and pairs kids and counselors.

“It’s so beautiful,” Steve said again. “So beautiful.”

How do the family and the volunteers deal with the emotion inherent in what they do?

“Obviously everyone gets emotional, but we have a job to do,” Steve said. “I remember that someone who has been on the trip for about 10 years told me after this first year that he had never worked so hard in his life. He worked in food service, and he never got to see any of the parks. He was totally in the background. And he told me that he worked so hard that once it was over he couldn’t even move.

“I brought a friend last year to help us on the trip. He said that he knows that we do great stuff, but we are not going to blow him away. I said okay. Sure. And not only was he blown away, he was blown away 10 times over. He walked out at one point, at the ball. He said he couldn’t stay there because emotionally he couldn’t handle it. But then later he said, “There was a kid on the trip who was depressed. Unhappy. Almost barking at people Obviously having a really hard time.

“‘So today, watching him dancing on a table. There are no words.’

“We watch a kid be infused with life.

“Parents often tell us, ‘You gave us back our kid. We haven’t seen him in two years. You brought him back.

“That is what we do. We infuse these kids with magic and life.”

Ohr Meir is at 

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