June 11, 2015
“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.”
Rex suffered from high-risk neuroblastoma, an aggressive and deadly form of cancer with very low survival rates. He began a very intensive treatment plan, undergoing seven rounds of chemotherapy, a stem cell transplant, 12 sessions of radiation, and six rounds of immunotherapy. During treatment he would spend more than 200 nights as an inpatient, predominantly at Dell Children’s Medical Center.
Clinical Trial for High-Risk Neuroblastoma
In 2000 a new clinical trial for high-risk neuroblastoma became available through the Children’s Oncology Group (COG), a prestigious research collaboration of about 2,000 physicians researchers at more than 200 hospitals across the nation, including Dell Children’s. Midway through the study, COG researchers were astounded when patient survival increased dramatically after treatment with the experimental drug, Unituxin. They knew this discovery was significant.
After Rex’s diagnosis, Lesley and her husband, Casey, agreed to enroll him into the Unituxin study. He is one of four CBCC patients who have completed treatment with Unituxin, and a fifth patient continues treatment today.
On March 20, 2015, the FDA approved Unituxin for treatment of children diagnosed with high-risk neuroblastoma. This was an important milestone for pediatric cancer research—Unituxin became one of only three drugs approved by the FDA over the last twenty years that are used specifically to treat children with cancer.
McCaul-Butterfield “Creating Hope Act of 2011” Changes Face of Childhood Cancer
Unituxin is now standard treatment for children with high risk neuroblastoma. Many more drugs for pediatric cancer are being developed, thanks to the passage of the McCaul-Butterfield “Creating Hope Act of 2011,” which provides market incentives to pharmaceutical companies to develop new drugs for children with rare pediatric diseases, such as childhood cancers and sickle cell. Researchers are hopeful to find more success through clinical trials so that more drugs will receive FDA approval in the near future.
The Creating Hope Act has changed the face of childhood cancer. Congressman Michael McCaul of Austin is one of the authors of the Creating Hope Act and recently visited the CBCC outpatient clinic at Dell Children’s. It was here he came face-to-face with the fruits of his labor. He met three-year-old Rex Ryan, who completed treatment with Unituxin in October 2014. Congressman McCaul invited Rex’s family to Washington DC, where they will speak on behalf of all families whose children are alive today, thanks to pediatric clinical trial research.
Miracles Continue at Dell Children’s
Today Rex is enjoying his happy and carefree life as a three-year-old toddler.
“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.”
Lesley is particularly grateful to the families whose participation in past clinical trials have led to research discoveries and helped create hope for others.
“The path they paved 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.”