My child’s cancer
Oded Grinstein makes very smart lemonade from what could have been nightmarish lemons
In the end, his is a happy story, Oded Grinstein of Fair Lawn says.
He repeats that frequently, and he’s right. In the end, his daughter survived the childhood cancer that would have killed her if her parents didn’t work as hard and tirelessly and selflessly and cleverly as they did, and if they hadn’t had the resources — not only financial but also intellectual and emotional — that allowed them to keep going.
But not every story ends as Oded’s did.
Sometimes children die of cancer. Sometimes their cancer is incurable — maybe some day it won’t be, but today it is. But sometimes we can’t be sure. Some cancers are very rare, but curable with the right approach. Sometimes, if a patient (or the patient’s family) can find a doctor with the right experience, aware of the right studies, seeing the right data, that child might be cured, just like Oded’s daughter was.
The first step for parents who are faced with the nearly unendurable news that their child — it could be a newborn, an infant, a toddler, a school-age child, or a teenager, that part doesn’t matter — has cancer is learning how to navigate that new reality. As they so often report, they find themselves complete strangers in a terrifying new land, where people use incomprehensible language that conceals harsh truths behind its impenetrable syllables.
Although Israel is known — and known correctly — for its extraordinary advances in medicine, often it’s not the best place to find treatment for children with rare cancers. That, Oded said, is because it’s small. “Israel is at the forefront of medical research, but because it’s small there is not a lot of experience,” he said. “We know that there are more than 50 types and subtypes of pediatric cancers.” That means that there are few doctors there with more than limited experience with a few of those types. “I don’t want parents to start leaving Israel — but with any rare disease, you want your child to be seen by experienced doctors.”
When the elder of Oded’s two daughters, who now is 10 1/2, was six months old, and the family lived in Israel, “we noticed a little bump on her lower back,” he said. “By the time she was nine months old, she was diagnosed with a very rare and aggressive type of sarcoma, a soft tissue cancer that in her case attached to the muscle tissue in her lower back. It is very rare. The chances of having it at her age, in that location, was one in 403 million.” But she did have it.
When Oded and Meital Grinstein realized that there were no doctors in Israel with experience in their daughter’s condition, “we searched all around the globe, in Japan and Switzerland and a number of other places in Europe and in the United States.” (Oded is a business developer; he has connections and knows how to work them, and how to search.)
There was no organization then that could help him. “You are like a deer in the headlights,” Oded said. “You don’t know what to do, and you deal with doctors like they are God.” Still, he was looking for a god with experience in the sarcoma that his daughter had.
They found the doctor they needed at Memorial Sloan Kettering in Manhattan. Dr. Leonard Wexner, a pediatric hematologist and oncologist, “is one of the leading experts in the world on pediatric sarcoma,” Oded said. “He’s seen about three-hundred cases.
“My brother took a plane from Israel to New York and met with him, and he basically said to me, in a nutshell, ‘If you want to save my niece, bring her over,’ and that’s what we did. It was a very tough decision, to leave your comfort zone, your support system, to go to the other side of the world, to a different language and a different medical system, which you do not understand.”
Oded Grinstein’s roots in Israel are deep. “My mother’s family are several generations there,” he said. “And Meital’s parents are seventh-generation in Jerusalem, from Iran and Iraq.”
On the other hand, he already spoke English, but despite his background in international business, “it was tough to do the research,” he said. His daughter was being treated in Israel, and “we didn’t have an iPhone then. I did research on a Nokia, at night, from the hospital, on dial-up internet.
“In the hospital in Israel, the protocol called for her being treated first with chemotherapy, and then radiation, and then surgery — or maybe it was surgery first, and then radiation — but mind you, she was like two feet long, so radiation to her lower back would get all her internal organs. We were very concerned about the implications of that.” That, in fact, was the trigger for his investigation into overseas options. “She completed chemo in Israel — the Israeli doctors said that she couldn’t get any more chemo — and then we came to the United States basically to undergo surgery, and then potentially radiation.
“We came to the United States for two months, we thought. The doctors here looked at her scans, and said, ‘No no no. She is not ready for surgery. The tumor has been growing. It would be wrong to do surgery now. We need to do chemo.’
“So I said, ‘But she got the maximum chemo she could get in Israel!’
“And the doctor said, ‘Let me do my job.’
“That’s where experience comes into play,” Oded continued. “Chemotherapy is a recipe. There’s some of this, and some of that. They check with 50 kids, and they take the average. But if the kid gets too much of this or of that, it is toxic. And if it’s too little, it’s not effective. So what if your kid is on one of the edges?
“That’s when the doctor can take the recipe and his experience and intuition.” Medicine is as much art as it is science — it is very much science but it also is very much art.
“The doctor gave her nine times the dose she got in Israel. He killed her — and he saved her.”
He remembers the first time he met Dr. Wexner.
“We were in the waiting room at Memorial Sloan Kettering, waiting, anxious about our first meeting with the doctor. We’re with the baby. They call us, and they say that he’s waiting for us in Room 9. We enter the area, and start walking down a long hallway, down to the room, which was at the end.
“I see it at the end of the hallway, and I see someone down on his knees and elbows, doing something on the floor, and I’m sure that it was the janitor. And then he sees us, and he stands up, and he says, ‘Hi. I’m Dr. Wexler.’ And I think, ‘This is the best doctor in the world?’ And he said, ‘Sorry. I saw that there was a baby coming to see me, so I just wiped all the toys on the floor with sanitizer.’ That’s Dr. Wexler.”
Despite her doctor’s sensitivity, the treatment necessary to save the little girl’s life was hellish. “Luckily she was a baby, and she doesn’t remember the suffering,” Oded said. “But it was really really tough.
“Not to mention that my wife was 8 1/2 months pregnant with our second child — there are only a year and three months between them. We timed the birth between the chemo cycles. My wife was admitted to Cornell Weill for ten days, and our other daughter was across the street, at Memorial Sloan Kettering.
“It was an emotional roller coaster.”
Now that ride has ended. “We stayed for a year. The doctor said, ‘No surgery now, no radiation, we’re going back to chemo, so we did a whole other cycle, and then the doctor said, ‘Now it’s time for surgery to remove the tumor.’” Then the little girl underwent radiation, then more chemo, and then, “in 2010, she was officially NED.” There was No Evidence of Disease. “Today, at 10 1/2, she is the leading scorer on her hockey team,” her father said.
“She’s an athlete, and a good student, and mainly what she has, aside from a couple of marks on her body, is just a story. And she doesn’t remember any of it.”
The Grinsteins decided to stay in the United States because they knew that Dr. Wexner saved their daughter’s life. “We know this is the guy we want to be near if and when the cancer God forbid returns,” he said. “Cancers tend to come back. So I want to be a taxi ride away from him. If we go back to Israel, what happens if she has a relapse? So for the first year we lived in Manhattan, and the second year we got some courage and moved to Queens, and then six years later we moved to New Jersey.”
(As readers might notice, when he talks about them for publication, Oded does not use his daughters’ names. He talks about the daughter who survived cancer all the time, but he balances his need to publicize his cause with his daughter’s need for privacy, and that, he says, demands that he refer to his daughters only by relationship, not by name.)
“I always joke that after their treatment, teenagers and young adults should be entitled to PTSD treatment, but with babies, it’s the parents who should get it,” Oded said. “But that was our journey. I did my research, and then I was in Memorial for almost a year, and I became an expert in this specific kind of cancer. I knew the treatments and the protocols and the complications. I met other parents who became experts on the specific kinds of cancer they were dealing with — brain cancer or lymphoma — and I thought to myself, ‘Where does all this information go at the end of the journey? At the end, we may have a child, or we may not have a child. But we have all this information.’
“And I thought that it would be a total waste to let all this information just stay in our heads, so I decided to document our journey, and the journeys of the other people who were willing to share it. I uploaded it on a website, and I called it MyChildsCancer.org.
“And then parents started contacting me to ask for more information and advice.” That how the website grew to what it is today.
“This is how we took our lemonade and made lemons out of it. Knowledge can save lives, and I wanted all the parents who are going through this process to share information with other parents.
“When you go online to buy a car, you can find all the details. When you want to save your child’s life, the information is not available. If you go online, probably the first search results would be the hospitals with the biggest marketing budgets. Where do you find the information about what to do next? Where do you find advice?
“This is the information that we have on our website.”
Most of the parents who My Child’s Cancer helps are Israeli. That’s because most of them find the group through word of mouth. It’s open to everyone who needs it, though, Oded said, and so far the group has worked with children from other countries as well.
Oded Grinstein still has his day job, but he devotes much time and attention to My Child’s Cancer. It is his passion.
It “has four programs,” he said.
The first is “personalized research.
“For each and every child, we build a research team to find the best expert for their own specific condition or complication. No two kids are the same. And it is this program that has the biggest impact.
“Just a couple of examples, from the last few months. An 11-year-old girl was scheduled to have her leg amputated, and information from us changed that decision. January 26 was when she was supposed to undergo the surgery, and as of July she still has two legs.” That decision was based not on an aversion to the surgery, but to new information, he added.
“There also was an 18-year-old girl who has cancer in her lower back, and she was scheduled to undergo a surgery that would have left her disabled, paralyzed in at least one leg. It was not clear how many internal organs would have been affected. It was very complicated surgery.
“Her parents didn’t want to go that route,” at least without knowing that it was inevitable, “so they contacted us. We did our research, and brought second opinions from some of the best doctors in the country.
“Eventually the decision was not to do it. This girl is now receiving radiation instead of surgery.” That was after consulting with Dr. Wexner; it seems to have been the right decision.
“We do personalized research,” Oded said. “We have teams of cancer researchers, of doctors who can take a case, learn it, just dive into it. And we also have a network of parents, who have connections. I don’t know another organization that does that.” Those researchers, like Oded, are volunteers.
My Child’s Cancer’s researchers do not offer advice, he added. “We find information. We give the information. We say, ‘Go discuss it with your doctor.’ Sometimes doctors are not open to second opinions. If someone still wants to pursue other options, then our second program kicks in.”
That second program entails patient advocacy and facilitating treatment. “We represent patients in front of hospitals,” Oded said. “In many cases, these are international patients. Often they’re from Israel. We help deal with the language barrier. We help negotiate prices down.”
Some of the families who work with My Child’s Cancer stay in their home countries — most but not all are Israeli — and they too need help negotiating a system that works in their native language, but not with their vocabulary.
In the third program, “when a family needs to relocate, we help them to find housing. Sometimes there are siblings; we help them find schools and summer camps. We host them during holidays and Shabbat.”
And then, finally, “at the end of the journey, we interview the parents. We take all that information, curate it, put it on the website, and make it available to everyone. We also have a YouTube channel with parents sharing this information.
“That is our tikkun olam,” he added. It is the way that he, his board, and the other people who work for My Child’s Cancer can help heal the world, one sick child at a time.
Tobi Bressler, who is on the group’s board, is a registered nurse, and has a doctorate in nursing, is the director of nursing for oncology and clinical quality at Mount Sinai’s medical school, and she is an assistant professor of medical oncology there.
“I can see from the other end” — the hospital end, that is, rather than the parent’s — “the need for something like My Child’s Cancer,” Dr. Bressler said. “How can I not do this? As a Jewish woman, this is about doing chesed. This is the ultimate form of chesed. It is an opportunity to be part of people’s lives at a time when they need it the most.
“It is humbling.
“Oded is inspiring, and his story is profound, but it is not unique, although what he did with it is unique. His experience is the experience of many families. Of too many families.”
Her job, she said, is to “provide a clinical lens, so Avital and I” — that’s Avital Gaziel, another board member — “look through the most recent data, the most recent studies, the most recent clinical trials” — and after they conclude that the information is accurate and applicable, they translate it into a form that parents can use, and give it to them.
What she does, Dr. Bressler said, “is combine science and love.” What the organization does is “an act of loving kindness, through science.
“Parents have a lot of questions,” she said. “It sometimes can be hard to translate everything into terms parents can understand. You walk into a physician’s office, and you leave with a thousand questions.”
She also can provide the kind of connections that parents should not need — but this is the all-too-real world, and they do need them. “Because I am in the health care field, I have worked with many of those providers,” Dr. Bressler said. “We all know each other. So when someone calls a physician’s office or a hospital or a clinic and says I need an appointment, they say come in six weeks. But if you know someone on the inside, you can send them a note, or a text, or give them a call, and I say I know this family — and they get seen right away.
“We can use the connections that we have through our day jobs to do important work for the most vulnerable.” For desperately sick children.
“This is a very family-centered approach,” Dr. Bressler said. “We are not only caring for the child, and investigating the science for the child, we are taking care of the whole family. We are creating a cocoon, a support system. We are making a place for them.”
These are Jewish values, she added. “The strongest one is tikkun olam. Of healing the world. We live our lives through the service of others. That is not only a Jewish concept. That is an everybody concept. But it is also a Jewish concept.
“What really drives this mission, is that these children, no matter where they live — they are ours. We have to do right by them.
“It is hard work,” Dr. Bressler concluded. “There is a lot of heavy emotional lifting. But when you have the opportunity to know that you have had a small part in making someone’s experience just a drop easier, it is worth all the tears.”
Avital Gaziel earned her doctorate in molecular oncology and immunology at NYU’s medical school, and she also is on My Child’s Cancer’s board. Like Oded, she was born in Israel.
She’s a cancer researcher; after she finished her post-doctoral work, also at NYU, she worked with pharmaceutical companies, doing communications. “And then I started my own business,” she said. That’s Trialjectory, where she’s head of medical affairs. “Throughout this process, I lost my mom to cancer,” she said. “So I was kind of trying to make a difference from the scientific point of view. I was trying to do something good with my knowledge. And then a mutual friend introduced Oded and me. The friend said that Oded needed help figuring out the whole clinical part of things.
“I had that knowledge from my work with pharmaceutical companies. I knew about clinical trials, and how cancer patients are treated. I know that space very well. We met in 2015, and I was extremely moved by his story and by his journey, and I understood that there was something that I could do.” Now, as a volunteer, Dr. Gaziel does the personalized research that helps parents, their children, and their doctors learn what specific treatment might be most likely to work for them.
Her own business, Trialjectory, is not nonprofit, but it fits in with her volunteer work. “We are using artificial intelligence to match cancer patients to clinical trials,” she said. “So what I do manually and very specifically for kids, we are trying to automate and democratize for the people across the world.”
Remember how important personalized connections are for the parents of sick children? That’s true now, but if Dr. Gaziel’s company is successful, that might cease to be true some day. That’s where the democratization comes in.
But it’s different for children now, because — happily — there are so very few of them who have some of these very rare illnesses. “It is very hard to digitalize this right now,” she said. “Every case is so specific. We have to look at their medical records, and find this one surgeon who has done this surgery twice in his or her entire career, and this would be the third surgery.
“It’s not like, say, breast cancer, where there is so much information that we can digitalize it.
“With my company, we are trying to eliminate the need to know someone. We are trying to eliminate the need to have someone like me. But until then, I am committed to doing this.
“Losing a kid is not what nature intended for us. It was such a great loss to lose my mom, but that is the cycle of life. When you see these parents struggling to save their kid’s life, and the kid is 4 years old, it breaks my heart. That is not right, and it needs to be fixed.
“That is my personal connection.”
Michael Kasdan of Maplewood — who went to the Frisch Academy in Paramus for high school, he said parenthetically— also is on the board. He’s an intellectual property lawyer, not a medical professional; he is as passionate about the mission of My Child’s Cancer as Dr. Gaziel and Dr. Bressler are, but he helps in another way. “My focus is on development,” he said.
To back up, Mr. Kasdan’s connection to My Child’s Cancer, like Dr. Gaziel’s and Dr. Bressler’s, began with Oded Grinstein, whose affect clearly is charismatic. “I met Oded when he was working at the Israeli economic ministry, and I was focused on doing an IP for startups and entrepreneurs,” he said. Although Mr. Kasdan then was working with another nonprofit, the two men kept in touch. “I don’t have a personal connection to pediatric cancer, but I was drawn to what he was doing,” Mr. Kasdan said. “His story is really compelling, and I love the concept of using information from parents’ experiences to help other patients.
“My day job is fun and interesting, but I tend to look outside it for my real passion projects.”
So he became a board member.
“We are looking to grow,” he said. “We are getting to be the size, and we are getting to have the track record, where I think we can reach out to corporate and private foundations. Until now, our most effective development has been with people who are interested in Jewish causes — individuals and families who we’ve known through personal connections.
“I’ve always been told to have one big event a year, but we’ve found that what’s most effective for us is to have small events, either a breakfast in the city or living-room events.
“That’s because every time you put someone in a room with Oded, that gets them. That reaches them.”
He works on My Child’s Cancer because, he said, “to me it is the ultimate tikkun olam. It is being there. It is the community aspect, of relying on a Jewish community that always is going to be there for us, across the world.
“At first, I thought that I had a resistance to charities that seemed to be only Jewish, that seemed only tribal,” he added. “But now, with the perspective I have on life, I think that the community aspect of it is important. There is something about being able to come from Israel to America, to a scary place, to have someplace to go for Shabbat or holidays.” That matters, he said; and, he pointed out, My Child’s Cancer isn’t only for Jews anyway. But having that Jewish understanding of community only helps — and it helps everybody.
Limor Offer, another Israeli native, lives in Closter; unlike the board members, she is an employee of My Child’s Cancer. “In January, I started as the program director,” she said. “I am responsible for the family coordinators. There are five of them, wonderful women who help our families in New Jersey and New York.”
Most of the work that she and the family coordinators do is related to comfort, not research.
“We have families who come to the United States for treatment, and some that stay in Israel,” she said. “If they stay in Israel, we support them. We are in touch with them every other week, to see if they need a second opinion or to check about insurance, or anything else they need.
“If they come here, it is complicated. Not all insurance companies cover it. We don’t encourage any family to come to the United States for treatment. We listen to them and offer options.” She and the family coordinators help the families who come to this country “find apartments, rent cars, find a school. We invite them to Shabbat dinner. We are like a second family for them.
“We also have families who came here and then go back to Israel when the treatment is done. They need help with follow-up.”
Ms. Offer finds the work emotionally compelling.
She also tells the story of the 18-year-old girl who Dr. Wexner saved from the surgery that most likely would have paralyzed her, instead giving her radiation.
She also tells the story of “a family that went back to Israel four months ago.
“The kid was nine months old, and was isolated in the hospital for chemo for almost a month.” This was back in Israel.
“His mom and I became really close. We are now friends. And she called me right after he was released from the hospital, and she told me that not only was he out of the hospital, but, she said, ‘Today I prepared dinner for my family, and I made a salad.
“‘I cut a tomato for the salad, and I felt like I was normal again.’
“And she told me that, and I was listening to her and crying. It was very emotional. It was so simple. She just cut a tomato for a salad.”
Had it not been for My Child’s Cancer, and for Oded Grinstein and the work he’s done, that mother might not have been cutting that tomato.
It’s pure tikkun olam.
Learn more about My Child’s Cancer at www.mychildscancer.org.
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