Meet Tova

Tova was a happy three-year-old toddler enjoying a family vacation when her father, Gedalia, noticed her smile was suddenly crooked. By the time they returned home to Rockland County, New York three days later, Tova was avoiding using her left hand and was limping on her left leg. Their pediatrician sent Tova to the hospital, where she underwent emergency surgery after an MRI showed a tumor. Gedalia and Kayla, Tova’s mother, soon learned that she was suffering from an extremely rare brain cancer called embryonal tumor with multilayered rosettes (ETMR). They also learned the heartbreaking news that only one in four children with ETMR survive.

It was a devastating blow, but Kayla became determined that Tova would be among that 25% that survive. So, the family followed the advice of the neuro-oncologist who immediately began aggressive treatment to fight the dangerous tumor: high dose chemotherapy, proton radiation therapy, and stem cell transplants. It’s been grueling, but Tova is now five years old and continues to improve through rehabilitative services for the residual physical consequences of the treatment that have left her physically disabled.

Through it all, Kayla’s optimism has built upon the example of her naturally resilient daughter. Kayla also attributes the family’s faith and close knit community’s support to helping them cope throughout Tova’s diagnosis and treatment.

“I was a school principal and had stopped working to spend more time with Tova and her five older siblings just a week and a half before her diagnosis,” Kayla said. “My school has a sign in every room to remind students and staff to pray for Tova, which is a comfort to us.”

Another other source of solace for the family has been Friends of Karen. The family learned from the hospital social worker that Friends of Karen could help with the cost of tolls and parking when they took Tova for treatment In New York City.

“Friend of Karen’s social worker Beth reviewed all our expenses and asked us if we needed help with our utility bills, which I had not thought to mention,” Kayla remembered. “We also received other things that we did not expect and meant a lot to the whole family, like money for clothing, and Hanukkah and birthday gifts. We had started working with Beth after the holiday wish lists were submitted, and we were amazed that Friends of Karen picked the perfect gift for each of our kids.”

Kayla says she was not always as resilient or open to this kind of support. She learned through a previous family crisis that she needs to embrace the reality that she is not in control of everything in her life.

“Once I let go of the need for everyone and everything to be perfect, it was easier to cope and to accept assistance,” Kayla observed. “Sometimes we need to be able to accept help and then we can also give help to others.”

The lessons Kayla learned that enabled her family to be resilient have led her to a new career path. She has completed a certificate to work as a family peer advocate to help support and empower other families facing life shattering events.