“As parents, our worst nightmare came to fruition on September 12, 2013, when our 17 month old son, Rex, was diagnosed with stage four neuroblastoma,” says Lesley Ryan. “Nearly two years later, we’re blessed to say we remain the strong foursome we once were, only mightier by the experience.”
Upon Rex’s diagnosis, Lesley and her husband, Casey, knew their family faced a long, uphill battle. High-risk neuroblastoma is an aggressive and deadly form of childhood cancer, and the odds for survival were not in their child’s favor. They agreed to enroll Rex into a clinical trial study using an experimental drug, Unituxin, for children with high-risk neuroblastoma. Rex began an intensive treatment schedule and would undergo seven rounds of chemotherapy, a stem cell transplant, 12 sessions of radiation, and six rounds of immunotherapy. During his treatment, he spent more than 200 nights as an inpatient, predominantly at Dell Children’s.
Cl“Rex is the strongest, most determined, and most courageous person I know,” says Casey. “Even on the worst of days, he found the strength to keep going and smile. Rex is such a good example of how we can’t choose what happens to us, but we can choose how we respond.”
“It was the community around us that carried us through,” Casey continues. “Rex and his older sister, Elle, were the leaders of that fight. They woke up every day ready to attack the day and WIN THE DAY. It was that mindset and the love they provide to Lesley and me that allowed us to keep moving. The entire staff on 4North at Dell Children’s walked right beside us the whole time. On some days, the people on that hallway literally picked us up off the floor. They took care of our entire family, not just Rex. From the doctors, nurses, clinical aid workers, housekeeping, food services, social workers, child life specialists—they’re our family and we love them all. They have done more for us than words can ever truly express. While I would never wish what we have had to go through upon anyone, I want anyone who has to walk this journey to know that they are in the hands of the very best that medicine has to offer when they’re at Dell Children’s.”
Clinical Trails Bring Hope
Rex has completed treatment, is an active three year old and especially loves to hang with his big sister, Elle. He continues to be closely monitored at the Children’s Blood & Cancer Center at Dell Children’s. The drug that saved his life—Unituxin—was recently approved by the FDA on March 10, 2015 and has become the standard treatment for children with high-risk neuroblastoma. The Ryans are grateful to all the families whose children participate in clinical trials to help further pediatric cancer research.
“The path they pave for families like ours and for children like Rex is an incredible one,” says Lesley. “Because of their courage, we can look forward to the first day of Kindergarten, awkward middle school moments, high school graduation, college visits, and someday, grandchildren. Because of their strength and bravery, we can embrace each new day and the opportunities they hold for Rex and for our entire family.”