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.