Gianna’s Story

Gianna’s story is about love and faith. 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 world today.
We named our daughter Gianna Grace after Saint Gianna and the Blessed Mother. She was born September 17, 2014 with dark hair, big brown eyes, and the most perfect rosebud lips. Our family was complete. She was the baby sister of her big brother Dominic that we long waited for.

Gianna failed her hearing screening in the hospital and her face was slightly asymmetrical, but the doctors had no major concern. At two weeks, things were concerning. A comprehensive hearing test showed her ears worked fine, but something was stopping the waves at the stem of her brain. When Gianna was only a month old, we took her to the Children’s Hospital of Philadelphia for an MRI. We were waiting for her to wake up from sedation when a large team of doctors walked into her room. The news was devastating: a large tumor intertwined in and around the stem of her brain extending 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. Our newborn daughter was given weeks to live.

Sorrow consumed us as every moment was filled with the thought of impending death for our newborn baby. We contacted every children’s hospital in the United States searching for some hope. We planned her funeral, started hospice services and began working with social workers and a play therapist for our son. Despite the grim prognosis, we took Gianna home to love her. We would give her the best life we could for as long as we had her.

After two more months, she started having a hard time managing her secretions, but our little girl was still fighting.  Another MRI was done.  It depicted large cysts forming in and around the tumor.  Most of the hospitals gave us the same high-grade tumor prognosis. There was little reason for hope.  A phone call on Christmas Eve changed our lives.  Ira Dunkel, an oncologist at Sloan-Kettering, called as we were getting ready for Christmas mass where Gianna was playing Baby Jesus and Dominic – a shepherd. Because of the atypical presentation, Dr. Dunkel believed it was not cancerous at all. It was a Christmas miracle!

On February 11, we placed her in Dr. Storm’s arms.  He performed a craniotomy to biopsy the tumor.  It was the longest 10 hours of our lives that led to a 3 month stay between the PICU and oncology floor.   During this time, she had 5 shunt surgeries, a central line, cyst drainage, a skeletal survey, and countless MRIs, CT scans, x-rays and ultrasounds.  Typically, pathology is able to give a diagnosis within a week after surgery.  Gianna’s slides, however, needed to be sent to other specialists.  We waited two long weeks to hear her final diagnosis from pathology.  Finally, at 5 months old, Gianna was properly diagnosed.  She does not have cancerous tumor.  She has a very rare blood disease:  Systematic JXG.  Systematic JXG is 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 only 8 reported cases of it ever attacking the brain. Her condition was very serious as survival depends on the extent of the disease and its location in her brainstem.

Some doctors had little hope for our baby girl.  One doctor even said that it was hard to believe that she was still alive after looking at her scans. Gianna couldn’t hear, open her mouth to cry, or smile.  Her right eye deviated inward.  After discovering her right vocal chord was paralyzed, they placed her on an NJ tube.  She had trouble eating and swallowing.  She had difficulty holding up her head and moving the left side of her body.  The diagnostic portion of Gianna’s life was beyond brutal, but still she fought on. 

With man’s limited understanding, Gianna’s healing may have seemed impossible, but we believe with God that nothing is impossible.  Miracles do happen.  Gianna is living proof of that. Gianna is now one year-old, and she can feed herself sitting in her high chair. She loves to eat!  Although her one eye is still deviated, she sees well out of both eyes.  She understands when we ask her to do specific things. She plays with her brother and loves her family.  She’s responding to sounds and is vocalizing – both vocal chords are now working.  Gianna is starting to move her left side.  She crawls, pulls to stand, climbs the steps, loves to play with her kitchen set and her brother’s cars. She refuses to let obstacles stand in her way and is working hard with her therapists to stand and walk. We are amazed by beautiful spirit as she continues to heal every day… And so are the doctors.

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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