NEW YORK — “How could we remove the eyeballs of a newborn baby?” Feifei Lin said of her daughter, Lulu.
When she was just 47 days old, Lulu was diagnosed with retinoblastoma, a rare pediatric cancer that begins in the back of the eye. A doctor in Wenzhou, China, where the family was living at the time, detected tumors in both of Lulu’s eyes, and scheduled eye removal surgery for that afternoon.
The news left Lin devastated — but also defiant.
“My husband and I both lost our vision when we were very young,” she said. “Having gone through this, we have to grasp her ever-so-little remaining vision.”
Lulu’s cancer is hereditary. Her father, Yi Tang, also suffered from retinoblastoma when he was young, and his eyes were removed.
Lin and her husband were determined to do what they could to avoid a similar procedure.
On average, every year there are about 325 cases of retinoblastoma in the US, while about 2,000 children in China are diagnosed with it. In China, however, it is difficult to access cutting-edge treatment, and many children die of the cancer.
Worldwide, 70 percent of children with retinoblastoma die of the disease, but in the US, only 2 percent do, said Dr. Paul T. Finger, director of the Ocular Tumor Service at the New York Eye and Ear Infirmary of Mount Sinai.
“What’s the difference?” Finger said. “The difference is early diagnosis and treatments.”
Lulu’s parents saw their last, best hope in America.
Children with retinoblastoma often undergo a procedure known as intra-arterial chemotherapy. A thin catheter is inserted into a large artery on top of the leg and slowly threaded all the way up into the ophthalmic artery. Then the chemo is perfused just into the eye.
It was this method of treatment that brought Lulu’s family to Memorial Sloan Kettering Cancer Center in New York — and also brought them hope.
Chinese families are increasingly coming to the US for the procedure, but costs are high. Lulu’s family managed to raise $160,000 for the initial treatment.
“I know some families, they sold their home, they sold their car; all their relatives donated for them. Their friends donated for them,” said Ying Song, who launched RB Children’s Foundation, a nonprofit established by the Chinese American Association of Metropolitan New York to help support these families financially.
Meanwhile, Finger’s Eye Cancer Foundation is training doctors and setting up retinoblastoma centers in underserved countries around the world, including China, so that all patients can get access to treatments.
Although Lulu has lost much of her eyesight, her parents are hopeful that she can live a productive life. And they are doing whatever it takes to ensure she can continue her treatment in America.
“Lulu’s eyes are so fragile and her vision has deteriorated so much,” her mother said. “We can’t afford taking any more risks.”