Annaleigh Grilo was a born performer. She sang at dinner. She sang with the Naples Philharmonic’s children’s chorus starting at age 5 and later with The Naples Players, at school productions and open-mic nights. She was fearless onstage in front of four or 400, and theatrical everywhere else. A broken nail could send her sprawling across the floor, her thick, curly mane spread around her in mock despair.
At 11 one night in August 2018, Debi and Pierre Grilo returned from walking the dog and found their 16-year-old daughter on the couch in tears. Her left leg hurt so badly that she could not bear the weight of a book against it.
The pain had been coming and going for weeks, originally attributed to an exercise strain. They already had plans to go to the doctor the next morning. “I’m not letting her suffer one more night,” Debi decided.
At the NCH Naples Comprehensive Health emergency room, an X-ray revealed a tumor. The physician said Annaleigh needed to be airlifted to Nicklaus Children’s Hospital in Miami. Debi told her daughter only that the doctors found something that required better testing than the regional healthcare system could provide.
Days of testing confirmed the diagnosis. “Oscar, what?” Debi asked.
Osteosarcoma is diagnosed in about 1,000 people in the U.S. each year, about 75% of them children and young adults under 25. It usually begins in a long bone around the knee, with pain that can be mistaken for an injury or growing pains.
1 of 2
Photography by Robin Hill
debi pierre grillo annaleigh family fund home sitting area
2 of 2
Photography by Robin Hill
debi pierre grillo annaleigh family fund home art installation
Debi and Pierre Grilo’s daughter Annaleigh was 16 when leg pain led to a word they had never heard of: osteosarcoma. About 1,000 Americans receive the diagnosis each year, most of them children and young adults. Early pain is often mistaken for a sports injury or growing pains.
In hindsight, Annaleigh’s first clues came during a family trip to France in June 2018, when she became so sick she slept for days. “My bones hurt,” she repeated. Doctors attributed it to a virus, and soon she seemed to be getting better. Back in Naples, her left leg hurt as the family watched fireworks from the Naples Pier on the Fourth of July. Weeks later, on the final day of a Naples Players summer program, she could barely walk into the Sugden Community Theater. In August, when doctors found the cancer, the tumor measured 17 centimeters. The singing stopped in the Grilo household after the diagnosis. “The house got really quiet,” Debi says.
At Nicklaus, Annaleigh began MAP, the three-drug regimen that remains the standard frontline treatment for osteosarcoma. The protocol has changed little since the 1980s. The drugs (high-dose methotrexate, doxorubicin, cisplatin) can damage the kidneys, heart and hearing. Alongside treatment, patients require days of IV fluids, rescue medication and repeat tests, which can keep families in the hospital for three weeks at a time.
Debi got used to packing for the repeated stays in Miami with suitcases, coolers, a toaster oven and a foam mattress. At the hospital, she kept medication schedules on the whiteboard and kept after nurses. “I was a pitbull—they were scared of me at first,” she says. Pierre supplied the distractions: Apple TV, Mario Kart, Boggle. Mother and daughter loved watching The World’s Most Extraordinary Homes on Netflix.
The routine was punishing, but for a time, it appeared to work. Surgeons replaced Annaleigh’s femur and she completed nine months of chemo. For about six months, she showed no evidence of disease.
1 of 2
Photography by Robin Hill
debi pierre grillo annaleigh family fund home wine cellar
Annaleigh sang with the Naples Philharmonic’s children’s chorus, The Naples Players and at open-mic nights. “The house got really quiet” after her diagnosis, Debi says. A friend later found a salvaged antique window bearing the name “Miss Anna Lee” and gave it to the Grilos, who used it to anchor a memorial to their daughter.
2 of 2
Photography by Robin Hill
debi pierre grillo annaleigh family fund home memorial mantle
She completed her junior year and scored a 1480 on her SAT. In the spring, she beamed in her red homecoming gown, next to her boyfriend, Kyle Kruk. He was serious and reserved; Annaleigh, who always lit up the room she walked into, drew out a lighter side of him. “His mother has said she does not know whether he will ever find someone who makes him feel the way Annaleigh did,” Debi says.
That fall, after a year of homeschooling, she rejoined her peers at Seacrest Country Day School. She was back inside the ordinary suspense of senior year, waiting on an early decision from Emory University. Then, her knee started hurting.
At first, the orthopedist suspected a structural problem: The cadaver bone might not be fusing as it should. But a few weeks later, at Annaleigh’s six-month checkup in Miami, an MRI confirmed that the cancer had returned, this time in the soft tissue surrounding her knee.
About one in three patients diagnosed with localized osteosarcoma will relapse, most within the first few years after treatment. The cancer can return where it began, in another bone, in the lungs—the most common site—or in several places at once. After a relapse, the five-year survival rate is 20% to 30%. The strongest predictor is whether surgeons can remove every tumor.
Photography by Robin Hill
debi pierre grillo annaleigh family fund home mirror
In early 2020, with Juliana home from college and Annaleigh’s tumor markers at their lowest since diagnosis, the Grilos found a property near Clam Pass. Her relapse had forced her to defer Emory; she and Debi planned to spend the year designing the house. Annaleigh died in August at 18.
When the Grilos traveled to New York for a second opinion at Memorial Sloan Kettering, Annaleigh’s chest scans remained clear and the recurrence appeared confined to her leg. The surgeons said the limb had to go. Annaleigh resisted, and the family returned to the Miami doctor, who believed he could save the leg. “He did not know the tumor had doubled in size,” Debi says. “It was like somebody glued a cauliflower to the outside of her knee.”
After the limb-salvage surgery, the wounds around her knee did not heal, and new tumors started to appear. “They were like popcorn, popping up all over her leg,” Debi says. The family consulted with another doctor from the Cleveland Clinic. “First things first, we have to get that leg off,” the surgeon said.
The house found them by accident. About six weeks after Annaleigh’s amputation and days before the COVID-19 pandemic shutdowns, her sister, Juliana, was home from college for her birthday. The family was having lunch at True Food Kitchen when a Zillow listing popped up on Debi’s phone. Annaleigh’s numbers were the best they’d been since diagnosis. One afternoon that spring, Debi had come home and heard Annaleigh singing with her friend Sabrina. She stopped to listen. “I remember thinking, ‘Oh, my God. I haven’t heard her sing in a year and a half.’”
They weren’t looking for a new place, but the Naples Park home where Debi and Pierre had raised their daughters had become stifling, every room shaped by the routines and anxieties of keeping Annaleigh safe. They had also long imagined living near Clam Pass Park, where they often launched their paddleboards. “The light’s green,” Debi remembers thinking. “Let’s go in a positive direction.”
Photography by Robin Hill
debi pierre grillo annaleigh family fund home stairwell lighting
For two years, the family talked about treatment, never what would happen if it failed. When it did, Debi apologized to Annaleigh for not preparing her. “I just need to know that you and Daddy are going to be OK,” she said. After Annaleigh died, Debi found notes to loved ones on her phone and a request to give her savings to an osteosarcoma nonprofit. “I never once heard her say, ‘Why me?’”
When negotiations stalled, Debi mentioned another property nearby, one she had admired from the water for years. Their real estate agent called the owner, who agreed to sell. A few months later, complications with the property gave Debi and Pierre second thoughts. Annaleigh intercepted. “If there is one thing I have learned in this life, it is that life is short and it is meant to be lived,” she told her mother. “So live it and be happy. If that property is going to make you happy, get the property.”
They closed on the home in June, planning to build. With Annaleigh deferring college, mother and daughter imagined the house as their project for the year ahead.
In the hospital room, Debi and Annaleigh studied architects they admired and started a Pinterest board. They were drawn to the coral cladding on an award-winning home by Miami’s STRANG architecture firm. When their real estate agent learned how much Annaleigh loved The World’s Most Extraordinary Homes, he contacted Piers Taylor, the British architect who co-hosted the show.
Piers sent Annaleigh a video wishing her well and saying he hoped the family would create “one of the world’s most extraordinary homes.” By the time the message arrived in June, doctors had told the Grilos that Annaleigh’s chemotherapy was no longer working. They would need to find a clinical trial. The further the disease advanced, the less guidance the family found. Her doctors wanted to help, Debi says, but there was no central roadmap for what came next. She searched hospital websites and clinical trial databases, contacting programs one by one. Annaleigh’s cancer produced an unusual hormone marker that disqualified her from some studies; others ruled her out for different reasons. “There was nobody saying, ‘Here are your options. Here is where you should go,’” Debi adds.
Photography by Robin Hill
debi pierre grillo annaleigh family fund home stairwell
Seacrest Country Day School’s Yellow Out volleyball tournament, started by Annaleigh’s friends in 2018, continues each fall. On November 11, the Grilos will open their home for Because of Annaleigh: Cocktails at Sunset. Both support osteosarcoma research through MIB Agents, the pediatric osteosarcoma nonprofit that the Grilos wish they had during their daughter’s illness.
Meanwhile, tumors were overtaking Annaleigh’s lungs. “I’m afraid of suffocating,” she told her mother one day in July. Debi later realized that her daughter had begun researching what might happen.
While awaiting a possible clinical trial in Boston, the family returned to Miami in August for scans and another round of chemotherapy. The CT scan showed that tumors now nearly filled Annaleigh’s entire right lung. Their hope remained fixed on the home they’d build on the edges of Clam Pass Park. Debi emailed Piers and asked whether he would consider working on the house. He agreed to speak with them about the project in September.
Annaleigh died on August 22, 2020.
Within a week, Debi unlocked her daughter’s phone. She did not know there was anything particular to find. “I wanted access to every piece of her I could still access,” she says. In the Notes app were letters to friends, cousins and her boyfriend. Annaleigh wrote about what each had meant to her. She thanked them, encouraged them. She had also left instructions: Her clothes should go to children in need. “I want to donate my $250 to an osteosarcoma charity,” another line read.
Annaleigh had underestimated her savings. Between babysitting, birthday gifts and work at her mother’s Practice Yoga studio, she had put away nearly $5,000. Debi and Pierre gave the money to MIB Agents, the pediatric osteosarcoma nonprofit they had encountered while searching for a clinical trial.
Founded by osteosarcoma survivor Ann Graham, MIB covers the full spectrum of the disease—from plain-language guides at diagnosis to Gamer Agents who play online with patients stuck in treatment—while funding research for a cure. “They have everybody at the table who has something to add: the grieving parent, the child with cancer, the researcher, the doctor and the grief worker,” Debi notes.
The Grilos created the Annaleigh Family Fund with MIB. Since their daughter’s first gift, the Grilos have helped direct about $400,000 toward research, including a liquid biopsy to detect lung metastases earlier and the Data for the Common Good, which makes osteosarcoma data from hospitals around the world available to researchers. Each fall, Seacrest still holds the Yellow Out volleyball tournament, which Annaleigh’s friends and teammates started in 2018, soon after she was diagnosed. Spectators wear yellow for pediatric cancer awareness, and proceeds go to MIB. “When you have somewhere productive to channel grief—somewhere that makes a difference for other people—it changes it,” Debi says.
After Annaleigh died, Debi began driving to the Clam Pass property and sitting beside the water for hours. Work eventually began on the house she and Annaleigh had expected to design together. Piers conceived the house from England, giving it a concrete back to the street, with two arms—the primary bedroom and kitchen—extending toward the water. Architect Dan Lyons and local contractor BUILD carried the project through construction in Naples. Debi worked with interior designer Judith Liegeois to soften Piers’ darker, more austere palette. Landscape architect Ellin Goetz replaced the lawn with plantings that draw birds and pollinators from the preserve.
Photography by Robin Hill
debi pierre grillo annaleigh family fund home keepsakes
Inside, Annaleigh’s guitar stands beside the fireplace as if she’s just set it down. Upstairs, a Ran Adler sculpture bears the same passage by poet Rumi that Debi had selected for her daughter’s celebration-of-life program: Don’t grieve. Anything you lose comes round in another form.
The day Annaleigh died on August 22, 2020, the family played videos of her singing in the hospital room. Nurses and other staff members gravitated in. They knew the gravely ill young woman behind the oxygen mask. They had not known the girl who could command a stage.
Next month, the Grilos will open their Clam Pass home for Because of Annaleigh, a sunset fundraiser benefiting MIB Agents. About 100 people will move through the rooms. There will be food, wine and music. All the money raised will go to an osteosarcoma research grant in Annaleigh’s name. “It allows us to carry Annaleigh forward in a different way,” Debi says.