BLESSED MEETINGS. Gianna Masciantonio receives a kiss from Pope Francis in Philadelphia and meets St. Gianna’s daughter, Dr. Gianna Emanuela Molla, at the World Meeting of Families, shown with mother Kristen. Courtesy of Masciantonio family

 

 

When Kristen and Joey Masciantonio learned they were having a second child, they felt their prayers had been answered; and with 4-year-old Dominic, they prepared to welcome their new baby girl with open arms.

After the baby’s delivery on Sept. 17, 2014, at Doylestown Hospital in Doylestown, Pa., the couple and their families rejoiced, figuring the slight palsy on the left side of her mouth would disappear with time.

“She was so beautiful,” recalled Kristen. “She had dark hair, big brown eyes and a perfect little rosebud mouth. We named her Gianna Grace after St. Gianna and our Blessed Mother. We never thought there was anything wrong with her.”

But after she failed the newborn hearing test (mandatory in all U.S. hospitals) and a follow-up test with the same results, their physician suggested a consultation at The Children’s Hospital of Philadelphia (CHOP), one of the premier hospitals for children in the country.

Neuro-oncologist Dr. Amish Shah attended the initial CHOP meeting, when Gianna was 4 weeks old. “She was so young,” he said, “but there was enough going on to warrant an MRI to see what was happening.”

After the results were in later that day, Joey and Kristen were shocked to learn that their newborn had a rare and aggressive brain-stem tumor, in the delicate spot where all neurons cross and communicate with each other and involuntary functions, such as breathing, are controlled.

“It turned out to be a whirlwind for the family, who understandably were totally unprepared for the diagnosis,” Shah recalled.

“That is the understatement of the world,” said Joey, who described the day “as every parent’s worst nightmare” overlaid with an unimaginable, hopeless prognosis.

“This disease is so rare; our doctors basically concluded that Gianna had weeks or, at the most, months to live,” added Kristen. “So, at their suggestion, we planned her funeral, put her in hospice care and hired a therapist to teach us how to talk to Dominic so he wouldn’t be frightened.”

How did they manage their fear?

“When we first heard the news about Gianna, it was more shock than fear, but as the days wore on, the fear began to set in for us,” Joey said. “We dealt with fear on two fronts. The first was constant communication with each other on what we were fearing. The communication with each other opened up dialogue to help us combat those fears and realize we had to leave the past in our rearview mirror and live for the current day. The second thing we did was rely on God to handle the details. We had a faith that, no matter what happened, God would bring us through this issue one way or another.”

“Although we couldn’t believe what was happening, amazingly, we never lost hope or faith that God would somehow bring us through it,” Kristen added. “Our family and friends rallied and formed a huge support group, joined by our wonderful employers: Joey works for Johnson & Johnson, and I am a sixth-grade teacher at Central Bucks School District.”

While the CHOP team considered options by consulting with the top children’s hospitals in the country, they felt that 4-month-old Gianna was strong enough to undergo a craniotomy to remove a tissue biopsy and drain the cysts that were growing in and around the tumor. That 10-hour procedure ushered in a three-month stint of additional surgeries, shunt insertions to relieve hydrocephalus and more. It also resulted in a reversal of the initial diagnosis: The doctors said Gianna did not have cancer, but, rather, a rare blood disorder called Juvenile Xanthogranuloma (JXG) that affects one in 10 million children.

Although this was not an entirely happy verdict, the medical team determined there were treatment options for the tumor that could prolong and add quality to her life. After surgery, Shah and the rest of the care team devised a plan of targeted chemotherapy and regular MRIs to determine little Gianna’s progress.

 

Prayers and Papal Kiss

At the same time, an army of supporters prayed for Gianna. Among them, Msgr. Robert Powell at St. Cyril of Jerusalem, their parish church in Jamison, Pa., organized prayer groups and included Gianna’s name in every Mass; and Deacon Joseph Windish blessed her before every treatment.

“The Masciantonio family is a wonderful family,” said Msgr. Powell. “They have been an inspiration to our parish. Baby Gianna has been a source of unity to our parish. This little baby has reminded us what love truly is and how powerful prayer can be.”

A Rosary group convened on the phone every Tuesday night, and the Carmelite Nuns of Allentown prayed together, too.

“I could go on about amazing people around the world who rallied around us,” said Kristen. “They ranged from [the faithful in] churches and convents to the staff at CHOP, from the ICU and oncology to hospice nurses, amazing doctors, social workers and everyone who touched us at the hospital. God surely brought them into Gianna’s life to care for her, and we are so grateful. It has shown us God is good.”

The family also believes their faith caused amazing things to happen.

In November 2014, right after Gianna was put in hospice care, Kristen had a dream that Gianna would someday meet Pope Francis: In the dream, the Pope was standing at the top of the Philadelphia Art Museum monumental stairway with St. Gianna’s daughter. The family was ascending the stairs to meet them.

Then, in September 2015, they received a call from a friend inviting them to go to Philadelphia to see the Holy Father at the World Meeting of Families. Donny Asper, an FBI friend, had access to special passes for an optimum viewing spot. “We were so worried about her risk of infection from the crowds, but Dr. Shah said to go for it, and the rest is history,” said Joey.

Shah’s encouragement was all they needed. Then, when the crowd urged Joey to hold Gianna high above the fence as the popemobile approached, he complied. Their enthusiastic chanting caught the Holy Father’s attention, and his vehicle stopped. When papal bodyguard Domenico Giani took the baby to Pope Francis for the now-famous blessing and kiss, the widely photographed moment catapulted little Gianna into a global spotlight and reduced onlookers to tears.

“The kiss, to us, was a sign that God had heard all of our ‘heart’ prayers,” Joey explained. “It was a small token of his unwavering support when we go through difficult times.”

Kristen agrees: “It was a sign that he has been with us this whole time.”

An added bonus harking back to the dream: The family met Dr. Gianna Emanuela Molla, St. Gianna’s daughter, at the World Meeting of Families.

 

Healing and Milestones

If the Masciantonios saw the papal blessing as a special spiritual symbol, it turned out to be more than that. Incredibly, the November MRI was so markedly different from the previous ones: The tumor was barely visible.

“We had a hard time seeing it at all,” Shah said. “The cysts were still there but were actually shrinking more dramatically than ever.”

As they cautiously move forward, the Masciantonios cherish every moment with their son and daughter.

“With man’s limited understanding, Gianna’s healing may have seemed impossible, but we believe with God that nothing is impossible. Gianna is living proof of this as she makes childhood milestones: learning to pull herself up, climb stairs, vocalize and point to things. She is beginning to hear for the first time and is starting to use the left side of her body. She loves to eat and can feed herself,” Kristen explained, marveling at the fact that they are celebrating events they never expected to witness.

“I think this is all from God,” added Joey. “I believe the Pope is a messenger from God.”

In true form, the couple, who have served as an inspiration to the CHOP team, are creating a foundation called For the Love of Grace (FortheLoveofGraceFoundation.com) to raise awareness and fund research about rare diseases in children.

“We are confident the foundation will help others who are in this situation, but, meanwhile, we still rely on our faith, because that is what helped us most of all,” said Kristen.

“Our journey was — and is — hard at times, but we want others to understand: No matter how bleak it is, God will bring you through it. He has guided us every step of the way.”

Marion Fox writes from

Philadelphia.