It is terrible to have your child diagnosed with cancer.
It is not necessarily a death sentence. It does not mean that you never will laugh again, or that joy and hope have left your life altogether. But there is no sugarcoating the truth that it is a terrible diagnosis for a parent to receive for a child.
It leaves a parent wounded, vulnerable, unsure where to turn, what to believe, what to do. There is a whole new list of demands to be taken care of at once, on top of the regular stresses of pre-diagnosis life.
What do you do? How do you order your life so you can help your child?
In Israel, you can turn to an organization called Larger Than Life (there it’s called Gdolim Me-Hachaim); its volunteers provide both emotional and practical support to parents as they navigate their new lives in a world whose known coordinates seem to vanish.
In the United States — and particularly in northern New Jersey and the rest of the New York metropolitan area — Larger Than Life USA helps those families, both in Israel and here. A group of volunteers based in Tenafly has devoted itself to guiding Israeli families — and that’s all Israeli families, not only Jewish ones — when they come here to pursue the often last-chance treatment options that top doctors and institutions here can offer.
As they do that, as they organize and translate and shop and hug, as they provide the volunteer work that demands even more heart and soul than most volunteer work, as emotionally demanding as much volunteer work is, they create bonds that strengthen the children, their families, and themselves.
On a recent Friday morning, a group of Larger Than Life volunteers — Sara Golomb, Yifat Yechezkell, and Harel Nahar, along with its one paid professional, its executive director, Netta Nathaniel — met in Sara’s dining room to talk about their work. The four, all of whom live in Tenafly, are good friends; their mutual affection is clear. Sara’s an interior designer, and her house is full of light, with white walls and sharp angles that made the bright colors of an Israeli breakfast on the table look even more jewel-like. (If Israelis were to eat a breakfast like that every morning, Israel would be a country of very happy, very sated, extremely large people.)
The light — and the food — made it far easier to discuss some of the darkness of the work they do, and to realize that there is hope, love, and even at times active joy in that work.
“In Israel, Larger Than Life is very well known,” Netta said. (It was a group discussion, so at times it was hard to identify who said what, but everyone agreed not only about the importance of the organization but also about the deep emotional connection they feel to it, and to the sense of doing something real and necessary that they draw from it.)
Larger Than Life — whose name, intended to give children with cancer the understanding that they are strong, even heroic, and that they fight back, and which probably works better in Hebrew than it does in English — was created in in 1999. That was a time, Harel said, when Israeli culture stigmatized, even shunned, people with cancer, to the point where many patients could not even bring themselves to name the disease from which they suffered in public. Cancer was seen as somehow shameful, potentially contagious (even when people knew rationally that it was not), most likely a reflection on the patient’s underlying worth as a person, and certainly not anything to talk about.
“Larger Than Life was founded by parents who had kids with cancer, because they knew their children’s needs,” Sara said. Because of the shame associated with cancer — and because even without that shame, there’s something intimidating about a child going to the hospital to visit a friend who may be bald, who may be attached to an IV or some other medical device — children with cancer often were isolated. They were lonely, and with good reason. Except for their families and the professional staff, they were alone.
The point of Larger Than Life was to demystify childhood cancer, to convince parents of healthy kids to let them visit their friends, to provide children with cancer with some fragments of normal life.
It’s hard to say how much of it is due to Larger Than Life and how much to shifting cultural assumptions, but although cancer still is feared, it’s no longer stigmatized in Israel as it used to be just 20 years ago, Netta said.
Volunteers visit sick children in Israeli hospitals, bringing toys and balloons along with a taste of the outside world. “Sometimes when we bring toys, a kid will say, ‘It’s not my birthday,’” she continued. “But we celebrate life. It’s optimistic; we say you will fight and you can win.”
She and all the other volunteers frequently noted that hope helps. Hope alone cannot conquer disease. Science is necessary. But when you add hope and love to science, scientists themselves tell us, often the mixture yields better results than science alone can give.
Larger Than Life has started a school in Tel Hashomer, in Israel, for about 45 children with cancer, ranging in age from newborns to first-graders. “It’s state of the art,” Yifat said; it’s built with an air filtration system that keeps it safe for fragile children and still allows them to be with other children, and to play with enticing toys, surrounded by bright colors. And of course to play with each other. It offers therapies and is accessible to children in wheelchairs or who may be immobilized in some way or other as a result of illness or treatment.
“Some parents drive an hour and a half each way to get their children to school there,” Yifat continued. “But what’s the alternative? Your only other option is to sit at home, lose your job, and park the kid in front of the television.”
Larger Than Life volunteers are a realistic bunch. They have to be.
There’s a waiting list for the school, and the group is building another one in the Negev.
Larger Than Life has a long list of services that it provides; with outposts in almost all Israeli hospitals, it offers playrooms and patient liaisons there, as well as retreats and summer camps, and financial aid to pay for medications when necessary.
It also brings groups of children and teenagers with cancer to Disneyland and Disney World. Those kids — who have to be cleared by their doctors as being up to its joyous rigors — are accompanied not by their own parents, but with parents whose children either have recovered or have died from cancer. It’s transformative, they say.
It also forms bonds.
“I was amazed to see a group of religious and secular kids, Jews and Arabs, from about 11 up to 18 years old,” Netta said. “Everyone is there, because cancer does not discriminate. They got to know each other for the first two days. Some wore wigs. Some needed help because they were in wheelchairs. And after a few days, they’re friends for life. They take off the wigs. Everyone accepts each other.
“It’s a journey. A journey for life, not just a trip to Disney.”
In 2008, Larger Than Life’s American affiliate was formed. The children and families it helps also make journeys; they come here from Israel in search of medical help.
Why is there any need to travel here from Israel, a country storied for its advanced healthcare? “Because Israel is a small country,” Harel said. “Doctors here have wider experience. Probably more than 95 percent of the children’s cases are resolved in Israel, but the extreme ones have to come here.”
“If there is a surgery that a doctor in Israel did only once or twice, a doctor at Sloan Kettering may have done it hundreds of times,” Sara added.
That means, they said, that “the families who come here are in terrible situations. They know that this is the last chance.”
That means that families — sometimes one parent and a child, sometimes one parent with both the child and one or more siblings, sometimes a grandparent with the child, sometimes the whole family — need help.
Sometimes they do not speak English, so they need translations. Sometimes they do speak English, but they don’t understand the medical terms the health care providers use. Sometimes they are fluent in English, but even those families — like all families everywhere — need another person, ideally somewhat more distanced and therefore somewhat more dispassionate, to listen, understand, and remember.
Larger Than Life does that.
Its volunteers also help families find places to stay, food to buy and eat, activities for the other children. They offer emotional support and friendship. They help make the formidably foreign a bit less offputtingly strange.
“You meet the parents at the hardest times of their lives,” Yifat said. “You feel that you have to be there for them, just to hold their hands, even if they don’t need anything else. Just to let them know that they are not alone.
“I think that working with these families gives you strength, a burst of energy, a kind of power, because if you can give them a smile, even for a minute, you are giving them something real and valuable.
“The soul and the body go together,” Netta said. “When you think I am sick, I am lonely, then the healing will be slower. But when you are surrounded by love and optimism, when you celebrate life, the healing process is so much faster.”
So far most of Larger Than Life’s volunteers have been Israeli, because they tend to hear about it from each other or from friends and family back home, and then from their network in northern New Jersey, but the group would love to get more American Jews involved as well.
Larger Than Life USA also helps raise money for the twice-yearly Disney trips, which are even more expensive than such trips normally would be because of the travelers’ special needs. The group is very proud that most of the funds it raises goes directly to support children and their families rather than to overhead. Netta is its only paid employee, a statistic about which all the volunteers are proud.
On Sunday, March 3, Larger Than Life USA will hold its annual gala; it’s at the Rockleigh Country Club. On February 13, another gala, this one for the young leaders Larger Than Life is nurturing, will raise money and celebrate hope and life at Sony Hall in midtown Manhattan. (See the box for more information on both galas.)
Until then — and after the galas are over — Netta, Yifat, Sara, Harel, and their friends will continue to visit families, organize meals, translate both bad and good news, and bring connection, light, and love to families of children with cancer.
Go to largerthanlifeusa.org to learn more.