In the months after surgeons removed a golf-ball-sized tumor from Luca Zayas’ infant brain, he gained the strength to sit and crawl, milestones his parents had feared he might not achieve for years.

Therapists were so impressed by his progress at St. Charles Hospital’s Outpatient Rehabilitation facility in Commack that they invited the family as guests of honor to their Christmas tree lighting ceremony in early December. Luca was dressed as an elf for the occasion.

Luca, now 18 months old, hit another milestone a week before Christmas, in the family’s Bay Shore kitchen. "Come to Daddy! Walk to Daddy!" Luca’s father, Richard Zayas, 42, a tattoo artist, coaxed. For the first time, Luca "let go of the wall and he walked by himself," mother Melissa Moro, 36, a nanny, recalled. "We were overjoyed."

The tumor in Luca's brain, a choroid plexus papilloma, is found in an estimated 124 people in the United States each year, most commonly in children. Luca's was not cancerous but without intervention, said Dr. John Grant, the pediatric neurosurgeon who operated on Luca, "he would be dead." If detection and removal of a rare growth deep in a Long Island baby's brain in the autumn of 2020 was a medical feat, so too has been his recovery. Jennifer Zeman, a Catholic Health St. Charles Hospital occupational therapist who works with Luca twice a week, said his progress in the last year has been "amazing for us to see."

Children who develop a choroid plexus papilloma have a five-year survival rate of 80 to 100% after complete removal of the tumor, according to the Dana-Farber Cancer Institute. A more aggressive cancerous variant, choroid plexus carcinoma, has a survival rate of 60 to 65% after surgery. Over the long term, one study of 59 patients by Norwegian doctors, published in the journal World Neurosurgery in 2021, found "the vast majority of survivors live independently as adults and work full-time." Luca may face further challenges though. His tumor was categorized as Grade II: less active than a Grade III carcinoma, but with a higher chance of recurrence than a slow-growing Grade I.

In the context of brain tumors the distinction between noncancerous and cancerous is less helpful than one might suppose, Grant said: "There are bad ones, and there are very bad ones," he said.

'Something was wrong'

Luca was one month old when his parents began to worry something was seriously wrong. He had difficulty lifting his head, which was so big Moro couldn't pull a shirt down over his torso. Often, she noticed, he looked down, not out at the world around him.

Lots of babies have big heads, the pediatrician told her. "I was dismissed, told the same thing over and over again — that I was a first-time mom… I knew, deep down inside, something was wrong."

Confirmation came in September 2020, when Luca, 11 weeks old, suffered a seizure in Zayas’ arms. The new parents watched as their baby’s eyes flicked side to side and his tiny hands shook.

After scans at Good Samaritan Hospital in West Islip showed the tumor near Luca’s brainstem, Grant transferred him to NYU Langone Hospital-Long Island in Mineola for brain surgery.

The choroid plexus makes fluid that nourishes and protects the brain and spine, but in Luca's case, because of the tumor, so much fluid was being produced that pressure built inside his skull, a condition known as hydrocephalus.

Luca already had shown some of the symptoms the National Institute of Neurological Disorders and Stroke identifies as common in infants with hydrocephalus: rapid increase in head size, seizures and "sunsetting," eyes that are fixed downward. Untreated, hydrocephalus can cause brain damage or death.

When the time came to operate, Grant made a two-centimeter hole in Luca’s skull. He cut through his brain’s superior parietal lobe, near the top of his head, applied heat to shrivel the growth, then removed it. He performs about 100 craniotomies a year, including 15 to 20 to remove pediatric brain tumors. The operation takes four to six hours, and most patients stay in the hospital seven to 10 days.

"Like all forms of neurosurgery, it's horrible, it's awful," Grant said. "You only ever do neurosurgery when the alternative is worse."

In some ways, Moro said, the surgery seemed unhelpful at first. As is the case for about half the patients who undergo the initial operation, a second procedure -- Luca's was conducted weeks after the first -- was needed to implant a shunt, a piece of silicone tubing, to drain excess fluid from Luca's head to his belly. After the surgeries, he held his right hand clenched into a fist, and his right arm close to his body.

Doctors told Luca's parents he would struggle to make important benchmarks, like rolling over and sitting up, and that he might not walk until he was 5.

Luca reached those milestones faster than predicted — in part, his mother believes, to therapy he received at the St. Charles Hospital rehabilitation facility from Zeman and physical therapist Nicole Dattilo. Luca takes two hour-long sessions of each therapy per week.

The brain, especially a young one, can rewire itself after physical trauma, Zeman said, a phenomenon called neuroplasticity. Soon after she started working with Luca, she made a splint for his right hand, forcing it to open. In the small, gym-like room where she does much of her work, she uses simple tools — a ramp-shaped cushion, Lego-like blocks and containers for sorting — to gently challenge his muscles, coordination and balance.

At a recent session, Luca, rambunctious and joyful, pushed himself up the ramp and slid down and toddled between Zeman and his parents. One day he may painstakingly fit rings on the spindle Zeman laid out on the floor for a motor skills-building exercise, but that day he put the spindle in his mouth.

"Kids are resilient," Zeman said. When Luca gets bigger, he'll be able to play with his friends and to play sports. "I think he’ll do anything in life," she said.

The challenges ahead

Luca and his parents still face challenges. His parents expect to spend many years paying for the operation that saved their son’s life. Grant was one of two Long Island pediatric neurosurgeons with experience performing the operation Luca needed, Moro said, and neither was in their insurance network.

The family faced medical bills in seven figures, she said. In a good month, they might pay down the debt by $500. Donations — helped, in part, by a GoFundMe campaign and a Facebook page chronicling Luca's progress — have defrayed some of their expenses.

Though Luca's tumor is gone now, it could return. That would mean radiation or chemotherapy, and he will undergo an MRI every three months to aid early detection, his mother said.

Luca will likely live the rest of his life with a shunt, and it's likely that, at some point in coming decades, the shunt will malfunction, with consequences that could be dangerous if not treated.

Some day, Moro said, "We will have to sit him down and tell him the story" of what happened when he was young, "so when me and Richard aren’t here, he understands, as a grown-up — I have a headache, I have to go to the hospital."

By Nicholas Spangler

nicholas.spangler@newsday.comspanglernewsday

Nicholas Spangler is a general assignment reporter and has worked at Newsday since 2010.