Shortly after Kristen Masciantonio’s daughter, Gianna Grace, was born Sept. 17, 2014, she failed a hearing test. “Her ears were working fine,” Masciantonio said. “The doctors didn’t understand why she couldn’t hear.”
When Gianna was a month old and could be sedated safely, she was given an MRI at Children’s Hospital of Philadelphia. Afterward, a team of doctors told Masciantonio and her husband, Joe, that Gianna had a massive, inoperable tumor on her brain stem.
“I remember falling to the floor,” Masciantonio said. “Because of the size of the tumor, they thought it was malignant. You don’t survive brain stem tumors. I asked a doctor if she’s ever seen miracles happen, and she said yes, she has, but not in this case. She said Gianna would not live to see her first birthday.”
Gianna, who recently celebrated her third birthday and her first full year without chemotherapy treatments, appeared to be the most hugged and kissed little girl in Bucks County on Sunday during her parents’ For the Love of Grace Foundation fund-raiser for pediatric brain tumor research at the St. Cyril of Jerusalem Church social hall in Jamison.
The Masciantonios hosted 300 female friends, community supporters, and families of children fighting life-threatening illnesses for an afternoon of designer-purse bingo, a raffle of 86 gift bags filled with everything from cosmetics and gourmet food to massages and karate lessons, and a silent auction of a Philadelphia Eagles jersey autographed by quarterback Carson Wentz, an Eagles helmet signed by defensive end Brandon Graham, and a bat signed by Phillies outfielder Nick Williams.
Dozens of the women wore “Gianna Grace: Faith Over Fear” T-shirts. Alexis DeLuca, who owns the Novel Baker in Ivyland and who, like the Masciantonio family, is a member of St. Cyril, said, “I’ve been praying for Gianna since she was born.”
Masciantonio spent the four hours on the run, shuttling between the gift baskets in the rear of the crowded hall and the stage up front where her husband called the numbers. She sold bingo tickets from table to table along the way and delivered prizes to the winners.
While the fund-raiser, which raised $30,000, was happening, her mother-in-law, Andrea Masciantonio, kept tabs on the very active Gianna and marveled at her granddaughter’s resilience.
“Gianna fights so hard,” she said. “She never gives up. She’s just amazing.”
Gianna spent the first eight months of her life on palliative care with two hospice nurses in the family’s Warrington, Bucks County, home. “She was terminally ill,” Masciantonio said. “We made funeral plans.”
She was sending Gianna’s brain scans to every children’s hospital she could, but wasn’t hearing any words of hope.
And then, the first of two miracles happened. When Pope Francis was riding in a parade on Market Street on Sept. 26, 2015, a member of his Swiss Guard picked baby Gianna out of the cheering crowd and carried her to the pope, who kissed her on the head.
“At that time, there was no hope for us at all,” Masciantonio said. “We were praying for a miracle because that’s the only hope we had. The miracle was the pope’s kiss. God showed us that he’s been with us.”
The second miracle was medical. Months after the pope’s kiss, on Christmas Eve, while the Masciantonios were getting Gianna ready to portray the Baby Jesus at church while her brother Dominic, 3 at the time, portrayed a shepherd, the family received a call from Ira J. Dunkel, an oncologist who specializes in pediatric brain tumors at Memorial Sloan Kettering Cancer Center in New York, who requested a biopsy.
It revealed that Gianna’s brain stem tumor wasn’t malignant. “It ended up being a very rare form of histiocytosis, a blood disease where Gianna’s blood cells were attacking her most vital organ, her brain stem,” Masciantonio said.
She said Kenneth McClain, director of the histiocytosis program at Texas Children’s Hospital in Houston, called and told her, “I think your daughter’s going to be OK.” It was hard to believe at the time, she said, because Gianna was so sick.
Advised by McClain, Philip B. Storm, chief of neurosurgery at Children’s Hospital of Philadelphia, and his team performed multiple surgeries on Gianna.
Two years later, after chemotherapy treatments that continued into 2016, the mass on Gianna’s brain stem has shrunk to the point where she’s been chemo-free for a year.
Debbie Saffren, who has been Gianna’s occupational therapist since August, works with her three times a week to strengthen her left arm, hand, and leg, which are weaker than her right side, and to strengthen her coordination.
“She’s incredibly smart,” Saffren said. “She faces everything head on and puts her whole heart into all of it. She’s like a child unicorn. I get teary talking about her. When I wear my ‘Team Gianna Grace: Faith Over Fear’ T-shirt, I feel I have magical powers.”