"Olivia is far too amazing as a child, daughter and big sister to Lillian to not get the opportunity to live a long and full life. Please help get the cure that Olivia needs to continue shining her light and love upon this earth."
July 17, 2013 is a day we will never forget. Our lives were forever changed. "You're little girl has cancer." Words you think only other people will hear, but now it was happening to us. Our beautiful and deeply sensitive Olivia was diagnosed with a rare form of pediatric cancer, called Ewing Sarcoma. Usually a cancer of the bone often discovered in early adolescence, Olivia was only 4 and a half at diagnosis and she has the less common soft tissue involvement. She was considered stage 4, the most aggressive and progressed disease. What to do? Everything and anything to help our Princess Warrior Olivia fight and beat this disease that NO child should have to battle. After the initial shock of the diagnosis wore off (but NEVER goes away) we began researching for the best institution to take over the care of Olivia and get her cured. Our first four months were at St. Louis Children's Hospital. She was now ready for a major surgery to remove the main tumor from her abdomen and mets to her liver. We needed the worlds best surgeon for her case and that was Dr LaQuaglia, or Dr Angel as we like to call him. After seven hours in the O.R. he completed this miraculous task and we hoped our girl would now be Cancer free forever. The next ten months were spent at Memorial Sloan Kettering in New York City, getting her through more chemotherapy, radiation and constant transfusions of blood and platelets. Treatment for Ewing's is one of the harshest / most toxic combination of drugs used to treat any aggressive Cancer, especially in a small child. As a result of these harsh therapies, Olivia now suffers from permanent liver and kidney damage. She continues to fight, but the cancer is too. An overnight change to her left eye showed that she has a new large mass in her sinus cavity and possible lymph node involvement near her left clavicle. So we keep battling. We are back at St. Louis Childrens hospital getting radiation, a new chemo combination and scans to judge how well she is responding to treatment. We are looking at potential phase 1 and 2 clinical trials and we may be heading to MD Anderson in Houston to increase her chances for a full cure. Due to her compromised organ functions, many clinical trials are not an option so we must seek private treatments, which are not covered by insurance and will be entirely out of pocket. There must be new advancements in therapies that are less toxic to these poor children!!
To say these past 18 months have been difficult for Olivia as well as our entire family is a gross understatement. We humbly sharing our story now in hopes that you will choose to help us continue to fight for a cure for Olivia, and all of the brave warriors that are battling this aggressive disease.
Olivia is far too amazing as a child, daughter and big sister to Lillian to not get the opportunity to live a long and full life. She's smart, compassionate and wise beyond her years, even before being diagnosed with cancer. She's a beautiful soul that just wants to be with her family, play with her sister and many stuffed animals, and live life to the fullest. Please help get the cure that Olivia needs to continue shining her light and love upon this earth.