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.