Rather than throw their 1-year old son Idan a birthday party this past July, Amanda and Akiva Zablocki of Manhattan celebrated in a more unconventional way: By finally picking a hospital for Idan’s bone marrow transplant. Idan has Hyper IgM, a rare and genetic immune deficiency disorder that affects two in a million people and leaves them with an inability to produce antibodies. His only hope for a cure is the transplant, which carries a 10-15 percent risk of fatality.
Amanda, 28, and Akiva, 33, chose Seattle Children’s Hospital, after months of intensive research, interviews with doctors, and exhaustive trips to cities across the U.S.
“Not only was the bone marrow transplant first invented at Seattle, but immunologists at the hospital’s lab were the first to discover Hyper IgM,” explained Akiva. “Seattle is also the only hospital in the country to use Treosulfan, a chemotherapy drug that is associated with significantly fewer fatal risks and complications than other pre-transplant drugs. The choice for our family is clear.”
The hospital’s transplant floor was built last year, “a huge plus if we have to live in a hospital nearly 24/7 for several months, and we loved the entire staff we met there,” he added.
Akiva, a survivor of a cancerous tumor on his brain stem that was diagnosed when he was 25, is no stranger to spending inordinate amounts of time in hospitals. But despite the couple’s confidence in Seattle, Amanda and Akiva are understandably nervous about leaving New York and virtually their entire support system behind when they fly to Seattle in September.
“We hope that we can build a new support network in Seattle, starting with a couple of good friends who live there,” said Amanda. “We’ll also be looking into joining a synagogue in the near vicinity of the hospital. The more integrated we feel, the more outlets we will have to keep up our strength for Idan as we leave behind our friends and family.”
One friend in the city is Dr. Ohad Manor, a friend of Akiva’s since they were 6 years old. He recently arrived in Seattle to do postdoctoral work at the University of Washington.
“He has always been a resilient and resourceful person, qualities which became even more evident and pronounced after his battle against cancer,” said Manor. “I couldn’t believe it when he told me of Idan’s situation.”
Manor just enrolled his son in pre-school at Congregation Beth Shalom, about a mile from the hospital, and expects to meet more families who he can then introduce to the Zablockis. Meanwhile, he said, “I will support Akiva and his family in any way that I can.”
David Aaron Engle, a close friend of Akiva’s who works at Microsoft, is confident the Zablockis will find a community in Seattle.
“They are both impossible not to like, and I’m sure they will make friends quickly,” Engle said.
“I see Amanda and Akiva’s love and dedication to each other and to Idan, that I believe that will carry them forward through this considerable challenge.”
But while carving out a community and support system is its own daunting task, the Zablockis will face a much bigger challenge in Seattle.
“Unfortunately, our belief that this hospital is the best place for our son’s surgery matters little to our insurance, which informed us that because the hospital is out of network, it will only pay for whatever it deems reasonable — along with a $50,000 co-pay — and the rest is on us,” Amanda said. “The transplant will cost between $600,000 and $1 million, so we will end up needing to cover at least $250,000, and possibly much more.”
The family launched a social media campaign to raise both awareness and funds for Idan’s medical care; and Amanda, an attorney, and Akiva, who holds a master’s degree in public health, use their combined knowledge and negotiating skills for hours on the phone each day with insurance administrators battling for more coverage.
“Instead of spending the remaining precious days with our son before the transplant and planning for our trip to Seattle, we are spending most of our time dealing with insurance and trying to come up with creative solutions,” Amanda said.