When Nikolet Tushaj was a year old, she was diagnosed with neuroblastoma, a cancer that starts in the nerve tissue. An agonizing 1½ years of treatment at Smilow Cancer Hospital at Yale New Haven followed for Nikolet and her family. Today, three years later, Nikolet, nicknamed Letti, is in remission. Her mother, Dorothy, says she is a very feisty, strong girl who loves to jump around and get into trouble, but is also a great fan of lipstick and nail polish.
Dorothy spent all of her time in the hospital while Nikolet was being treated with chemotherapy, radiation, a bone marrow transplant, and antibodies. Nikolet had a difficult time with all of the treatments. Dorothy’s goal was to stay strong and positive for her family. She says that she has always been a positive person and her instinct was that everything would be okay. Nikolet’s dad, Nicholas, left his construction job to stay home and take care of the other children while Nikolet was in treatment. Needless to say, money was tight.
The Tommy Fund, which financially helps families who have a child battling cancer, stepped in to help the Tushajs during this difficult time. They paid for their mortgage and utilities, gave them meal cards for the hospital, and sent plenty of toys home for Nikolet’s siblings. The Tommy Fund continued to help for six months after Nikolet was released from the hospital until Nicholas was able to find construction work again.
Dorothy Tushaj says that without help from the Tommy Fund, she doesn’t know what she would have done. As she recalls, “Our boat would have sunk.” The Tommy Fund helped this New Haven family when they were the most vulnerable, emotionally and financially. Today the Tushaj family is back to normal, as Dorothy always knew it would be. She feels strongly that they have put Nikolet’s illness behind them.
Dorothy and Nicholas Tushaj now have seven children: Nikki, age 7; Pren, age 6; Jack, age 5; and Nikolet and her twin sister Nikole, age 4. Mikael, age 3, was a baby while Nikolet was in treatment. Last year, Nikkell was born. Dorothy says her goal for her large family is for all of them to grow up together, help each other, and always have each other for support.
The older children attend the Benjamin Jepson school nearby, and enjoyed a fabulous summer playing with their dog, swimming in their pool and at local beaches and playing in parks. Just like a family who has successfully battled cancer should be doing.
When Kevin Queiroz was just eight months old, his doctor felt a mass near his hip during a routine visit for a suspected ear infection. “He had a tumor on his liver; it was the size of a baseball,” recalls Kevin’s dad, Sergio Queiroz. The pediatrician referred the family to Yale-New Haven Children’s Hospital where doctors diagnosed Kevin with hepatoblastoma, a cancer originating in the liver.
To battle Kevin’s cancer, his mother, Cristiane, moved into the hospital with her son for several weeks. That left sisters Jessica, 10, and Stephanie, 9, home with their dad and a group of family and friends looking after them when dad traveled to the hospital to visit. “It took about a week to get the diagnosis,” Cristiane recalled. “Kevin had imaging studies, a CT and MRI scans, and a biopsy. The waiting was very hard.” After the diagnosis, doctors began the induction phase of the chemotherapy in order to shrink the tumor. Then surgeons removed the tumor, followed by more chemotherapy. When the chemo made Kevin’s hair fall out, Sergio shaved his own head in solidarity.
Cancer takes an emotional toll on any family but it also wears them down financially as well. There are many unexpected costs associated with cancer that are not covered by insurance: parking, gasoline, meals, and more. Shortly after Kevin’s diagnosis, social worker Marisol Lassalle, LCSW, told Cristiane and Sergio about the Tommy Fund and its mission to support families while their child undergoes cancer treatment.
Sergio is a roofer in Danbury and when he needed to take time off from work to stay at the hospital with Kevin, the Tommy Fund paid the family’s mortgage. The fund also helped pay for gas for the car when Sergio made the hour-long trip from Danbury to visit Kevin and his mom. “When your child is diagnosed with cancer, it’s like a tsunami,” Lassalle said. “I tell parents that treatment is like a journey that they did not ask for, nevertheless, the team and I will go along on this journey with them.” The clinical social workers provide psychosocial and emotional support, counseling to the child, siblings and parents. The social workers also act as a liaison with the school, provide advocacy (for health insurance, housing, Social Security Disability, resources in the community and to facilitate communication with team) and help with financial needs.
Once he was released from the hospital, Kevin still needed chemotherapy treatments several times a week, six cycles in all. A couple of months later, doctors discovered the cancer had spread to Kevin’s lung. Again, surgeons removed the lesion and Kevin began six more cycles of chemo. In the meantime, Kevin is a typical toddler who loves bubbles, playing soccer with his older sisters, and is fascinated by the family’s pet turtles. Now 20 months old, Kevin is nearing the end of his treatment. “He is a happy baby. He is a miracle boy,” Cristiane said.