There can be few things worse — scarier, sadder, more mind-scrambling — than having your child diagnosed with cancer.
To be sure, being diagnosed with cancer doesn’t mean being marked for swift and certain death. There are ever-more-sophisticated treatments, and very often they work. Children’s prognoses often are good, even if they have to slog through pain and fear to get to that happy ending.
But what if the only way to get your child the treatment she needs, the treatment that stands the best chance of saving her life, means that you have to go far away from home? That you have to go to a country where you don’t know anyone, far from your family and friends and support system, where you either don’t speak the language at all or speak it as a foreigner, okay with the ordinary stuff but not with doctor-speak?
Of course you do it, because it’s your child and you will do anything to save her, but how do you do it?
It would be foolish to pretend that there are easy answers to that question, but if you are Israeli — and any kind of Israeli, Jewish or Muslim or Christian — you can turn to Larger Than Life.
The Israeli branch of Larger Than Life — yes, it’s not an intuitive name in English; the Hebrew, which seems to work better, is Gdolim Me-Hachaim, and it is the children and their families who are those heroes — runs camps and nursery schools for children with cancer, and it takes children who no longer have cancer on joyous trips to Disney.
In the United States, its American Friends provide solid support — translations, food, clothing, places to mark Shabbat and holidays, help finding housing — as well as the equally necessary intangibles — companionship, understanding, empathy, and the intuitive connection that comes from sharing language and culture in a place far from home.
(Because Israel is such a high-tech powerhouse, with such high-level medical care, often people wonder why any of its children would have to leave for treatment. It’s because the country is so small that even its best doctors have less experience with the rarest forms of cancer than their counterparts in larger countries, with larger pools of patients. It’s entirely a function of size.)
On a recent Friday morning, four of the American Friends’ most active New Jersey volunteers, along with the group’s sole employee, its executive director, talked about their work. The three women — executive director Netta Netaniel and volunteers Yifat Yechezkell and Sara Golumb — and one man — Harel Nahar — all live in Tenafly, and all are close family friends; the three women finish each others’ sentences and share each others’ cellphones to forward each other Larger Than Life photos and videos.
They raise money for the programs in Israel, which they frequently visit; they also raise money and spend a great deal of time with the children and their families who are here now.
Larger Than Life’s school in Tel Hashomer, for newborns up to first-graders, has state-of-the-art technology that keeps the children from being exposed to anything that might make them sicker, or might breach their chemotherapy-weakened immunological systems. The organization is planning another school, in the country’s south. It’s for “Arabs, Bedouins, religious and secular Jews.” The socioeconomics are different there from other parts of the country; “it’s the periphery of both the country and the culture,” Netta said. “So they need even more help. And it’s not only with physical help; it’s with people to accompany them through the process.” Those families often need the same kind of help that Israelis in America need, because in a way they’re strangers in their own country.
When they have to travel here for treatment, it’s even harder.
“A few days ago I heard about a family from Israel,” Netta said. “They are newcomers from India. Indian Jews. Their 9-year-old daughter was diagnosed with cancer, and the parents don’t even know what it means.
“They come from a small village in India, and they have no idea what cancer means. And their daughter will have to come to the United States for radiation treatment.
“Even their Hebrew is poor; it’s like a biblical Hebrew. They don’t speak English, and they don’t know what cancer is. So you have to hold their hands and take care of everything for them.”
There are now 15 families in the United States from Israel seeking treatment for their children, the friends said. There are Israeli families linked to Larger Than Life in Ohio, Florida, Boston, Philadelphia, and Houston, but most are in the New York metropolitan area, getting treatment in either Manhattan or in Somerset, at Robert Wood Johnson University Hospital Steeplechase Cancer Center.
“That’s a lot of families,” Sara said. The rise in rates of cancer is worldwide, she added. “It seems that a lot of it is environmental, and also there is a lot of stress,” which does not cure cancer but can help it grow.
“I believe it is the new flu,” Harel said. “The new pneumonia. And there is no one solution to cancer. There is no one cure.”
The organization also supports research, mainly through a project called Avatar that’s at Tel Hashomer hospital, near Larger Than Life’s first nursery school. Avatar is working on personalized immunizations, Netta said.
Most of the people who support Larger Than Life in the United States give money, and their funds are both urgently needed and gratefully appreciated, the friends said — and the gala fundraiser they will hold next month speaks to that need (see box) — but a surprising number of them also want to help.
Families with children the ages of children in the hospital can set up playdates — that helps the sick kids feel normal, and it’s amazing how much feeling normal can help. If that’s too much — or if they don’t have appropriately aged kids — they can find out about a child’s interests, hobbies, or desires, and send a gift through Amazon Prime. Personalizing helps; each child is an individual person.
“We had a little girl who came with her parents for treatment, and I asked Netta if anyone was celebrating her birthday,” Yifat said. “I have a friend who makes designer cakes. The little girl really wanted a giraffe cake.” She got one. Another got a cake with a rainbow. “It’s a very optimistic cake,” Sara said.
“The mother said, ‘We are not alone,’” she added. “‘There are many good people around us.’”
How do these people do it? How can they spend so much time with children who are so sick? How can they do it knowing that some of them will die? “It is hard sometimes to do it, but it is harder not to do it,” Yifat said. “It is harder to sit on the side and do nothing.
“Yes, sometimes I go home and I cry. But I prefer to be there. I prefer to see a child smile. And then I might go home and cry, but I feel much better.”
“It is a privilege,” Netta said. “I am blessed to be able to do it.”
The program is individualized. Just as their illness, their treatments, and their prognoses vary, just as their backgrounds and interests are different, so too are their needs. “The first interaction with the families is when you see how you can help them,” Harel said. “The parents see how we can help. As we translate for them, they can see how, now that they are thrown into this huge America, they can concentrate on recovery or on getting the treatment. We can help them not have to concentrate on where to stay or where to find food that they can eat. We can do that for them.”
All the friends point to research that shows how influential laughter can be to survival, and how much hope and happiness can help. “This disease makes people feel like they’re all alone, and like it’s the end of the world,” Sara said; at the very least, it feels like it’s the end of their world. But “we let them know that they are not alone.” That the world will not end, even as it reconfigures sharply.
“Part of recovering from cancer is how you are feeling emotionally,” Harel added. “If we change their mood, we increase their chances for recovery. If you are stronger emotionally, your chances for recovery are higher.”
It can be a stretch for people to feel good — chemo is debilitating, and “when you have no hair, you don’t look like yourself, it’s hard to feel good about yourself, but at the end of the day, if your emotional mood is good, then the outcome can be better,” Sara said. Which is not at all to say that emotion can overcome cancer — it can’t — or that people who do not make it somehow are responsible for that failure — they aren’t — but just that if everything else is equal, mood can help, they all said. And even before they can possibly get to happy, or even to hopeful, just plain old “normality is a huge friend,” Sara added.
To that end, they try to be sensitive to the needs of the patients they meet. Netta told the story of a teenage boy who needed a coat. Instead of just bringing him one, she bought him a gift card for Burlington Coat Factory; not only could he pick exactly the coat he wanted, but he was encouraged to go shopping. He could go to a store and for at least the time he was in there he could be like everyone else. He could be an anonymous kid, rather than a kid with cancer.
They tell the story of a Muslim family. “The child was named Mohammed, and he was a photographer,” Netta said. “He wanted a special camera, to capture everything that he saw.” He got the camera, but “unfortunately he did not make it,” she said, emotion clear in her voice and on her face.
The friends told the story of another son, Beni, and his father, Shuki. “They were religious,” Netta said. “Beni had pancreatic cancer, and he went to Sloan Kettering. That kind of cancer usually is fatal.
“I believe that Shuki knew how it was going to end, but he was in denial, and he came here to fight for more time, and because maybe there would be a kind of cure. But at least to add a few months.
“I met them when they came here a few months ago. They stayed in a religious community in Brooklyn, and they needed help with transportation. I spoke to them, and I realized that Beni was 18. He was a man, not a baby. I know that Shuki had raised him all his life, and the father was fighting like a lion, but they would have to separate.
“Beni looked horrible, he was so skinny, and then the pain started, and it was horrible. And I realized that he didn’t have a cellphone of his own. He always took his father’s phone, but he wanted to connect with his friends in Israel.
“So I said that we would buy him a cellphone. We wrote a letter to the board and asked for permission to buy it. They approved it.
“So the next day I asked Beni how he felt, and he said, ‘Oh, I have some pain in my hand,’ and I asked, ‘How are your feet?’ He said, ‘My feet are fine,’ and I said, ‘Good! Stand up, take your father, and go to the nearest cellphone store and buy one.’
“They cried.” And they bought a cellphone.
“After a few weeks, when Rosh Hashanah was coming, they called, and they were very embarrassed, but they said, ‘We have to ask you for something.’” The context for the request was that Beni had not known, when he left home, that he was as desperately sick as he was. Instead, “one day he was out with his friends, and the next day we told him that he was getting on a plane and we were going to New York.
“‘If I had known, I would not have gone out with my friends,’” Beni said. “‘I would have been with my mother and my brothers.’ He wanted to say goodbye,” Netta said.
“So we got them tickets for two weeks” — it’s not easy to get two last-minute roundtrip tickets to Israel just before the High Holy Days, but they did — “and they went back and he said goodbye. That’s all he wanted. He wanted to stay with his mother and brothers, and to say goodbye to them. It broke my heart.”
“Even though we couldn’t save his life, he got his last wish, to be with his family,” Yifat said. “It is devastating.”
“But you feel lucky that you were there for this family,” Netta said. “If we hadn’t been there, it wouldn’t have happened. We were lucky to be able to be there.”
So why did Beni and his father come back for those last weeks in Sloan Kettering instead of staying with his family in Israel?
“Because he and his father still had faith,” Netta said. “Emunah.” They fought until the end.
Their work has affected them, the friends say.
“I always tell my kids to say thank you for what they have,” Yifat said. “We have to be thankful.”
“There are three steps,” Netta said. “They are health, hope, and happiness.” As kids get better — not all of them do, all four said, because it is important to be both hopeful and realistic — “you can see the changes in their skin, and their hair starts to grow.” And so does happiness.
Larger Than Life also helps siblings. The New Jersey chapter fundraises for annual programs both in and outside Israel, including trips to Disney, and also to a summer camp for toddlers and their families on a kibbutz.
“Cancer is a very lonely disease,” Yifat said. “Often siblings are neglected, and sometimes the siblings resent the kid who is sick,” who sucks up their parents’ time and energy. “The camp is downtime for the whole family together. Quality time. Togetherness time.”
This year, the gala’s headliner will be a comedian, an Israeli standup named Modi, specifically because Larger Than Life wants to emphasize the centrality of laughter to healing.
“It’s just before Chanukah,” Netta said. “The holiday of miracles. We want miracles at the gala. We want to have the money that we will raise at the gala to support as many families as we can.
“It is touchable. It is real. You can buy a present and you can go to the hospital and you can give it to a child.”
Volunteers always are welcome to do that, all four friends said, and they do not have to be Israeli. They just have to care. The more love, the more laughter, the more hope, the more the possibility of healing.
Who: Larger Than Life
What: Holds it annual gala, featuring the comedian Modi and honoring Orly and Avi Amos
Where: At the Rockleigh Country Club, 26 Paris Ave., in Rockleigh
When: On Thursday, December 12; the buffet dinner, at 7:30, will be followed by the program and the show.
How much: Tax-deductible tickets are $136 each; VIP tickets are $250.
For tickets or more information: Call the office at (888) 644-4040; Sigal at (201) 280-5980, or Sarit at (201) 456-3616, or go to largerthanlifeusa.org.