From Israel to Hershey, in search of hope – and a cancer cure
Eli and Miriam Safrai say the decision to temporarily relocate their family from Jerusalem to Hershey was easy. They knew the trans-global move could represent their best hope of connecting their son Muli (short for “Shmuel”) with cancer treatment that could save his life.
It all began in late 2009, shortly after their son Muli’s first birthday.
“He seemed tired, often complained of a pain in his stomach and was constipated,” Miriam says. Despite these symptoms, Muli’s doctor found no medical problem. When the symptoms persisted, his parents sought a second opinion – and shortly thereafter, Muli was diagnosed with neuroblastoma. A tumor had formed in Muli’s adrenal gland, not far from his kidney.
Apart from tumors of the brain and spinal cord, neuroblastoma is the most common tumor affecting children. Roughly half of all patients who are treated for it recover. But the other half relapse, and when the cancer returns, it’s usually very aggressive and brings a grim prognosis. In fact, relapse neuroblastoma has a five-year survival rate in the single digits.
Immediately after he was diagnosed, Muli entered a vigorous, year-long treatment regimen that included a stem cell transplant, chemotherapy, surgery, radiation and immunotherapy. Muli was declared to be in remission. But within weeks, Eli and Miriam received the news they feared most: the cancer was back, this time in Muli’s arm. After hearing about the various options, Eli and Miriam agreed to more chemotherapy and radiation. The treatment warded off the cancer, but caused a fungal infection that made Muli gravely ill.
After Muli cleared that hurdle, Eli and Miriam – knowing Muli’s cancer was almost definitely going to come back – scoured the Internet for clinical trials that would accept him. However, they found none for neuroblastoma patients in remission. Just as they thought all options had been exhausted, they received encouraging news on an online forum for parents of children with cancer. They learned of a trial taking place nearly 6,000 miles away at Penn State Hershey Children’s Hospital.
After reviewing Muli’s recent scans and other medical records, Ken Lucas, M.D., director of the Pediatric Stem Cell Transplant Program at Penn State Hershey Children’s Hospital, accepted the toddler into the trial. “While by scans we know he was tumor-free, this child most definitely had tumor cells in him to some degree,” Lucas says. “That’s why we enrolled him in this study – because his chances of relapse are so high.”
The trial consists of four, one-month treatment cycles. Each begins with a chemotherapy drug that makes tumor proteins increase on the surface of the tumor cell. The patient is then given a vaccine that targets those proteins. The vaccine is created using the patient’s own white blood cells, which are isolated, modified, and transfused back to the patient.
The Safrais did not put life on hold while living in Hershey. On the contrary, Miriam received her doctorate in medicine from an Israeli university and traveled home to give birth to the couple’s third child, Lechem, during their months-long stay in south central Pennsylvania. Meantime, Eli continued to work toward his Ph.D. in physics. And their daughter, Liam, attended pre-K classes at the Jewish Community Center in Harrisburg.
Along with Muli’s treatments, the Safrais say their top priority was trying to maintain a semblance of family life.
“When Liam [came] home from school each day, we often [tried] to make family time together – by going someplace or seeing something,” Eli says. One such excursion led the family to New York City where they took in the view from the Statue of Liberty. They also enjoyed the Pennsylvania Farm Show, as well as a visit to an Amish farm in Lancaster County.
Muli and his family are now back home in Israel. Lucas and his team will continue to monitor Muli’s condition in conjunction with his caregivers back home. Muli will undergo scans every three to four months to ensure his cancer stays in remission.
Muli is the fourth patient to be enrolled in the cancer vaccine trial. Lucas hopes to enroll a total of fifteen, with an ultimate goal of discerning which patients the vaccine therapy was able to help.
Despite the long odds, his parents are optimistic that Muli will be one of those people.
“We really have a lot of hope,” Miriam says with a reassuring smile. “And for us, just hope is also something good.”