One of the many truths about the coronavirus is that it doesn’t stop anything else.
That’s a good thing — it was a glorious spring, the summer’s not ideal, too hot, too wet, but at least within normal limits, and now the days are getting shorter and all too soon it’ll be fall, all glowing leaves on the trees and jumbled masses of brown ones below them.
It’s also a very bad thing. There might be fewer communicable diseases around — we don’t get close enough to each other, on the whole, to communicate them — but other sicknesses are not impeded at all by the pandemic. People continue to have heart attacks and strokes — in fact, they have them more frequently, because too often they stay away from doctors’ offices — and they continue to have cancer.
Even children continue to have cancer. That’s the ghastly, intuitively unfair but unappealable truth. It might be harder for them to get the healthcare they need, but that does not stop their cancer.
For years now, from way before the pandemic, Oded Grinstein of Fair Lawn has worked to help children with cancer. He founded his nonprofit organization, My Child’s Cancer, because his own child, his older daughter, whose name he chooses to keep private because he does not want her defined online by the illness she overcame when she was a baby, was diagnosed with a rare cancer.
The family is Israeli; they lived in Israel then, and would live there still, if it were not for his daughter’s illness. Israel is well known as a small country with very good doctors and a highly developed healthcare system. That’s true — but the problem, if you have a child with a rare disease, is the country’s size. It means that its doctors see far fewer unusual diseases than doctors who have similar educational backgrounds and operate on a similar level of sophistication, but are exposed to a larger pool of patients and more cases of unusual diseases.
When Oded and Meital Grinstein’s daughter was diagnosed with a hard-to-treat cancer a little more than a decade ago, they decided to come to New York; she was treated at Memorial Sloan Kettering, the Grinsteins had another daughter, both are healthy and flourishing, and the family relocated to Fair Lawn because they feared that moving back to Israel, away from her doctors, would be pushing their luck.
Instead, Oded Grinstein, whose English is deeply colloquial and whose reservoir of connections runs deep, decided to start My Child’s Cancer, because he wanted to help other families avoid at least some of the terror his had endured.
My Child’s Cancer — which works mainly with Israeli children because so much of its work is networked, and Israelis, no matter where they are in the diaspora, know lots of other Israelis — matches families who have come to this country disoriented and afraid with people who can help them. It also matches children with treatment by doing the research that links doctors with not much experience with a specific condition but a patient who has that condition to other doctors who already have dealt with it.
None of this ever was easy, but now, with the constraints of the pandemic around the world, it’s even harder.
Last week, Mr. Grinstein and Michael Kasdan of Maplewood, who is on My Child’s Cancer’s board, talked about how the organization is adapting to this horrifying new world.
“Pediatric cancer doesn’t stop,” Mr. Kasdan said. “It doesn’t even slow down. That means that families who came here from Israel during the pandemic had a very hard time even going out to get groceries, because they are high risk.”
Often, an entire family comes here from Israel for a child’s treatment. There were families who came before the pandemic. Back then, in the before times, both parents could see their hospitalized child.
Now, at most one parent might be allowed to see that child, who most likely would be immunosuppressed. That means that any infection could be deadly. “So the family might have two or three other children in an apartment, and basically they are locked down. They have been quarantined since March.
“So we organize volunteers to do the shopping for them, and to deliver groceries to their doorstep. There is no contact, but the volunteers can make sure that they are safe.”
Part of My Child’s Cancer’s unique approach to its work is the personalized research it provides for each child. Until the pandemic started, the organization, which works with world-class medical researchers, would provide a team of volunteers who would focus on each child; “every child is different,” Mr. Kasdan said.
“But it is harder to connect with the experts now,” Mr. Grinstein said. “Some of them, for their own safety, stop coming to the hospital. It is harder for them to see patients, and they are less available to go over medical information. That means it is much harder for patients to get a second opinion.
“Also, some hospitals are not accepting new patients.” And it is much harder to travel internationally; neither Israel nor the United States are allowing the same free flow of people that once seemed so normal.
For some of the children with cancer, for example, Mr. Grinstein said, the difference between establishing a connection with a medical expert or not can mean the difference between having a leg amputated or not; between having brain surgery that could affect the patient’s vision or not. “The implications might be the ability to walk or to see, or maybe even more than that,” Mr. Grinstein said. Telemedicine can help, but often it’s not possible to do it from the United States to Israel.
My Child’s Cancer tries its best, but often the best it can do is to get parents the information they need — information that the parents can’t act on, because they can’t find the right doctors.
There are more new roadblocks for families who do manage to get to the United States. “It is very difficult for the family to get medical insurance during covid-19,” Mr. Grinstein said; the other children have to be insured before the family can go anywhere. “So traveling becomes a big deal, and that complicates everything.”
The organization does not offer medical advice, Mr. Grinstein said. “We provide the research to the families, and we tell them to discuss it with their doctors. We don’t give them recommendations. We find treatment options, and we give them to the families.”
For example, he said, “We had an 18-year-old girl who was supposed to undergo surgery in her lower back that might have left her immobilized. The doctors weren’t sure exactly how immobilized, but they knew that at least one of her legs wouldn’t work, and they were afraid that it also might affect some of her inner organs.
“We reached out and found an expert who recommended a kind of proton radiation therapy that’s not available in Israel. She came to the United States for the radiation, and after three months she went back to Israel cancer free. She had no surgery, and she is walking on both legs. She went back to finish high school and get ready for her military service.
“Another example is a small girl who had a brain tumor. Her parents were pretty much lost. It was the beginning of the journey. We researched to find the best experts, and found another kid who’d had a similar tumor. We asked if they’d like us to connect them to the other families; we introduced them, and that introduction led the family with the younger child receiving the newest treatment available.
“We leverage what we learn from previous cases, and with the approval of the first family we are able to share that information and also create a relationship.”
He told a third story, of a 20-year-old IDF soldier “with a very large tumor, grapefruit size, in his groin, that touched major veins and organs.” It required very complicated surgery; My Child’s Cancer was able to help the family find a surgeon with exactly the right experience to tackle it. The surgery included “putting in tiny rice-grain-size radioactive pieces that you leave in for a while and then you take out.” (Clearly there is a more accurate and sophisticated way to describe this procedure, which the families and the doctors know but newspaper readers need not.)
This procedure is not available in Israel yet, but the patient benefitted from it.
In general, Mr. Kasdan said, “We help families navigate through the hospital system. Before, it was a big, imposing thing to do. There is a need for expertise and attention. But now, it is even more difficult; there are fewer doctors and more to navigate through. The work we do now is harder — and even more important.”
The pandemic has made the next step that My Child’s Cancer already had begun to take even more important. It’s beginning to work more directly in Israel. The best possible scenario, Mr. Grinstein and Mr. Kasdan said, is for treatment to be available in a child’s home country; if not, the child and the family have to travel. Then the group provides advocacy and support. But now it’s working on MCC Israel; it’s hired a staff to try to provide families with the support and research that can allow them to stay at home while providing their children with the best healthcare available.
The work that My Child’s Cancer does needs funding. Normally it fundraises through small parlor meetings; his own emotional intensity and the intensity of the work he does makes it easy for Mr. Grinstein to connect with people in those setting. Now, however, the coronavirus has made those kinds of meetings impossible.
“The challenge for us has been that we do not have a huge annual gala,” Mr. Kasdan said. “It is Oded, meeting with people, telling his story, connecting on that level. Now that we can’t do that, we are being more creative online, through our social media. “We are shifting our entire fundraising operation to the online space,” Mr. Grinstein added. They’re offering free courses and meetings. And on the evening of Sunday, September 13 — September is childhood cancer month — the Israeli star Stephane Legar will perform online for My Child’s Cancer; tickets start at $10. (See below.)
Childhood cancer doesn’t stop during a pandemic. Neither does research, or hope, or love. That’s what My Child’s Cancer helps to provide. There’s more information at mychildscancer.org.
Who: Israeli music star Stephan Legar
What: Performs to raise funds for My Child’s Cancer
When: On Sunday, September 13, at 11:30 a.m.
Where: Online; get the link at eventsmcc.org
How much: Tickets start at $10