Gianna’s Story

Gianna’s story is of miracles, medicine and never giving up. It is about God’s grace and the power of prayer. It’s about family, friends and strangers coming together – showing the goodness in the word today.

Named after Saint Gianna and the Blessed Mother, Gianna Grace Masciantonio was born September 17, 2014 with crazy dark hair, big brown eyes, and perfect rosebud lips. She was the baby sister her big brother Dominic had long awaited. For her parents, Kristen and Joey, the family felt complete.

Gianna appeared to be a healthy baby in the hospital except failing her hearing screening. At two weeks, a comprehensive hearing test showed her ears functioned but something was stopping the soundwaves at the stem of her brain. Her doctors expected her auditory nerves didn’t develop. When Gianna was a month old, Kristen and Joey took her to the Children’s Hospital of Philadelphia for an MRI. While waiting for Gianna to wake up from sedation, a large team of doctors entered her room and knelt down before the family. They received devastating news: a large tumor was entwined in and around the stem of her brain and extended into her pons area, the most delicate part of the brain. The size and location of the tumor indicated a very aggressive, fatal cancer with no surgical options. Gianna was given weeks to live.

Sorrow nearly consumed Kristen and Joey. They contacted the best children’s hospital s in the United States searching for some hope. Advised by the doctors, they planned their daughter’s funeral. Hospice care stared in their home. Rooted in their Catholic faith, Kristen and Joey prayed unceasingly for Gianna, calling on God’s strength and asking for her life to be spared. Weekly telephone meetings to say the rosary with extended family and friends were a literal and figurative lifeline to endure and help fight on for Gianna.

An MRI two months later depicted large cysts forming in and around the tumor. Experts continued to give the same prognosis: there was little reason for hope. But, a surprise phone call on Christmas Eve changed everything. Oncologist Dr. Dunkel from Memorial Sloan Kettering Cancer Center personally called the family. He explained the cysts forming in and around the tumor was something he’s never seen. He wanted a biopsy. It was truly a Christmas miracle!

Guided by this new theory, Gianna underwent a 10-hour craniotomy to biopsy the tumor at Children’s Hospital of Philadelphia. That led to a three month hospital stay with 5 shunt surgeries and numerous other invasive procedures. Finally, at 5 months old, Gianna was correctly diagnosed with Systematic Juvenile Xanthogranuloma, a very rare blood disease caused by an excess of white blood cells called histiocytes that form clusters and damage major organs. JXG affects 1 in 10 million children, and there are very few reported cases of it ever attacking the brain.

Even with the change in diagnosis, doctors still had little hope for Gianna. One even said that it was hard to believe that she was still alive. Gianna couldn’t hear, open her mouth to cry, or smile. Her right eye deviated inward and because her right vocal chord was paralyzed, she had trouble eating and swallowing. Holding up her head and moving the left side of her body were nearly impossible. Despite all, Gianna fought on with Kristen and Joey beside her and a team of family, friends, doctors and physical therapists praying and supporting her any way they could. Dr. McClain from Texas Children worked with Gianna’s team of doctors from CHOP. She started a 15 month intensive chemotherapy treatment. It would have been easy to believe the end was near for Gianna. But this was only the beginning.

Day by day, week by week, months have miraculously stretched into years. The baby who was given little hope is now over 3 years old and has grown into a chatty, playful, curious, tenacious and loving little girl! Despite 18 surgeries and continuing challenges with her right eye and the left side of her body, Gianna doesn’t let anything slow her down. She plays with her brother, sings, loves to walk the neighborhood, writes her name. She will be starting pre-school soon. She is determined and works hard with her therapists so she will hopefully run, jump and do all the other things kids love to do.

Gianna’s healing may have seemed impossible to many experts, but Kristen and Joey believe that, with God, nothing is impossible. They are thankful for all of her doctors, nurses and therapists and for everyone’s prayers that helped them through each day. They are amazed by Gianna’s beautiful spirit as she continues to progress every day.

Pope Francis’ Kiss

When we heard our daughter would not live to see her first birthday, I had I had a dream she celebrated that milestone with Gianna Emmanuelle, the daughter of the saint she was named for, and Pope Francis. A week after Gianna turned one year old, that dream came true. Pope Francis took Gianna off the side of the road and kissed and blessed her. For us, it was a sign from God that he has been with us, carrying us through this journey. Ironically, Gianna’s tumor significantly decreased after her next scan. Yes, we were surprised because the tumor wasn’t showing decrease over the previous four treatments, but never did we say that the kiss healed her. We believe Pope Francis is a living saint, but we believe that God performs miracles. In fact, Gianna’s entire life has been a miracle for us – from her birth, to the papal kiss to her continuing healing.

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