Rosie’s story began on August 2, 2004 when she came into this world weighing nearly 10 pounds and arriving with great excitement in just 32 minutes! She was a strong fighter from day one. Now 4, Rosie has more courage, strength and fight in her to face whatever comes her way each and everyday. She has a big personality, glimmering eyes, a shinning smile and contagious laugh. She is a joy to be around and captures many a hearts with her charm.
Rosie has been battling an inoperable brain tumor since Sept 2007 when she was diagnosed with an optic chiasmic, hypothalamic Glioma. At the same time she was diagnosed with aquired obstructive hydrocephalus and just five week before with neurofibromatosis or NF1. She has endured five brain surgeries, and two other surgeries to date. She has a port (like a central line) in her chest so she can receive her weekly chemotherapy.
In the last 15 months Rosie has been through more than most people experience in a lifetime. She has had many complications from her brain surgeries. Following months of being in and out of hospital she was weak and frail, she lost 17 pounds off of her 40 pound body and lost all her hair from chemotherapy. After the first round of chemo her tumor tripled in size and a new chemo regimen was immediately started. The tumor has shrunk back to its original size and is now considered “stable”, it has not grown, nor has it shrunk.
Rosie has had to suffer through well over 500 shots due to growth hormone hypersecretion caused by the tumor putting pressure on the pituitary gland. Currently, she receives a new drug, FDA approved for in the US within the last year, allowing her to receive a longer lasting, slow release injection every 28 days. Her latest complication is the diagnoses of CPP or Central Precocious Puberty. We elected to have an implant surgically placed in her upper arm that slowly releases medication to hold off puberty; even though she was the youngest patient at Children’s to have the implant at the time and only one in 15 to elect this method of control. This too is a new drug recently FDA approved and used in the US.
Due to the location of her tumor, in the center of the brain, the hydrocephalus and her NF disorder Rosie’s is a life threatening and rare case with many complications. Rosie has had more MRI’s and CT scans then we can count. She sees a multitude of doctors, for which I have to keep a well-organized binder to keep them all straight. Because her case is so complex, she is often walking down a new path in treatment. Her team of doctors does there very best to navigate her care to the best of their abilities; to work as a team, to provide excellent coordination of care.
It has been a long journey all of us, gaining her physical strength back, working through physical and occupational therapy, gaining back her balance and coordination. Her hair is finally starting to thicken up and grow, she has gained about 25 pounds, but still has her battles with fear and anxiety and high levels of stress, but she keeps pushing forward. She is a hero, an angel in our lives!
Her battle is not over; we do not know what the future holds with neurofibromatosis. NF is a disorder that causes tumors to grow on or within her body and will be a life long battle for her, along with her many other obstacles. We pray and hope for a cure for NF—for the new Drug Discovery Initiative to be the answer we so desperately need. Please visit Rosie’s care page for her latest—updates.
