Fifteen years ago, Oded Grinstein’s infant daughter Shani was diagnosed with a rare cancer. The doctors in Israel were world-class, and the facilities were state-of-the-art, but there was a lack of experience within the medical system for dealing with this particular cancer.
Grinstein and his wife found a doctor at Memorial Sloan Kettering Cancer Center in Manhattan who specialized in Shani’s cancer, rhabdomyosarcoma. They moved to New York to get treatment, intending to stay for a month. The month became a year, but by the end of it, Shani was cancer free.
Grinstein credits the doctor’s expertise with saving his daughter. Back in Israel, the doctors there had done as much chemotherapy as they felt was safe. But the Memorial Sloan Kettering doctor was willing to push it much further.
“After she got five cycles back in Israel, and they said no more because of the toxicity, he gave her nine more cycles, almost double. Basically killing her with each cycle,” Grinstein said.
“But he knew how to save her. He had the tools, he had the knowledge, the experience. Because back then he had already seen 200, 300 cases, versus our doctor in Israel, who saw maybe two. This [New York] doctor sees in a month more cases than all the doctors in Israel in a year.”
By the time his daughter was cancer free, Grinstein had become something of an expert in her type of cancer. He decided to document all of the information and advice he had accumulated over the course of Shani’s treatment.
Then he shared it online for other parents who found themselves in a similar situation. That was the beginning of MyChild’sCancer, an organization that has helped over 1,000 families since its creation over a decade ago.
Today, MyChild’sCancer has operations in Israel and the United States, and is in the process of receiving their charitable status in Canada (which means they can accept charitable donations and offer tax receipts once the process is completed). They are currently looking to spread awareness of their work, strengthen their ties with local cancer centres and add members to their local team of board members and volunteers.
Even though the charity only has offices in two (soon to be three) countries, it helps families all over the world through its five services–all of which are free for the families.
The flagship service connects families of children with cancer to renowned experts who specialize in those specific types. The charity will organize a three-way Zoom call among the experts, the local oncologists, and the family. Grinstein calls this setup a win-win-win.
“The parents, they get the best experts in the world working on their type of child’s cancer, right? But they also become a part of the conversation because they’re there… It removes all the second guessing and parents are not being certain that everything is being done. And even when the result is not good, at least they know that they’ve done everything possible, they spoke to the best,” Grinstein said.
“The local doctors, they also get to work with the best experts in the world on a live case, which is a rare opportunity when you think about it. And we also see a spillover. They learn from these Zoom calls, they then apply it to other kids. And the experts, well, we pay them generously.”
In 2023, MyChild’sCancer facilitated 90 of these calls. Fifty-two of them affected treatment, and in eight cases, the family relocated to be closer to the treatment. That’s where the second service comes in. MyChild’sCancer organizes local support for families who move to be closer to medical care.
There are also two educational services. One, the Wiki, is a comprehensive catalogue of useful information shared by families who have dealt with every cancer imaginable, presented in an accessible and actionable format for parents. The second one is an annual conference that MyChild’sCancer organizes in Israel each year to teach oncologists in the country.
Finally, there is the patient advocacy service, where the organization helps families with practical details like translating documents, guiding them through insurance and finding the most cost-effective options–sometimes saving families hundreds of thousands of dollars.
The organization is designed to be both rigorous and realistic. If there is a better solution out there, then MyChild’sCancer will try to help a family find it. But it will not make excessive promises just to instill a false hope that will later be extinguished.
Grinstein compares that approach to competitor organizations who will fundraise millions of dollars and fly families to world-class cancer centres, in the hopes that the doctors there will take them in.
“But we cooperate with the doctors,” Grinstein said. “And we know sometimes these doctors already know the case. They were in touch with the doctors in Israel and the doctors told them, ‘Don’t come here. Don’t send them over. We have nothing to offer.’
“What makes us unique is the process. It’s a transparent process. It puts the parents in the center. It’s honest.”
One of the specialists that MyChild’sCancer works with is Dr. Eric Bouffet, a pediatric oncologist specializing in brain cancer who works at The Hospital for Sick Children in Toronto. Bouffet has worked with the organization for a few years now, consulting on cases and even traveling to Israel for a conference.
Bouffet says the services that MyChild’sCancer provide are invaluable to families navigating a complex and difficult process.
“Families sometimes, they seek an opinion and they will send an email to 200 different people, and then they will be overwhelmed with the outcome,” Bouffet said. “With MyChild’sCancer they will really channel the opinion, make sure that the parents have the right answer to the question.”
Bouffet is grateful that the organization allows him to put his expertise to use in helping as many patients as possible
“I find it’s a privilege to help them and to work with these families, and also with MyChild’sCancer because this is a great organization. Oded is somebody I respect for the work he is doing, the enthusiasm he has, the support he’s providing to patients and family based on his own experience,” he said.
“I hope we can do more around the world because this is a unique example of how a family can get support from doctors who are willing to help and set a new fantastic and successful example.”
