Shane Rogers — “Clinical trials … the reason survival rates are so high now for pediatric cancers”
Kristen Rogers admits that when doctors asked her if she would consent to putting her 8-year-old son a clinical trial, she was afraid, and balked. “My first thought was that I don’t want my child to be a guinea pig,” she says. The El Dorado Hills mother of two changed her mind after consulting a friend who read through the entire clinical trial her son’s oncologist at UC Davis Comprehensive Cancer Center had recommended.
“I know the importance of clinical trials,” she says. “It’s the reason survival rates are so high now for pediatric cancers. And without the clinical trials they wouldn’t know how the drugs affect the kids.”
Shane Rogers was diagnosed in July 2012 with Acute Lymphoblastic Leukemia (ALL), a disease of the white blood cells and bone marrow. ALL is the most common type of childhood cancer, which affects more than 6,000 children in the United States each year.
Dr. Jay Balagtas, the pediatric oncologist who oversees Shane’s care, suggested a study through the National Cancer Institute’s Children’s Oncology Group to evaluate whether modifications of a portion of the chemotherapy regimen minimize toxic side effects of the drugs while still providing excellent survival rates. The trial also includes an assessment of health-related quality-of-life measurements that will serve as the basis for future screening and intervention strategies to minimize side effects associated with ALL treatment.
"It’s not until your own child is diagnosed with cancer that you understand how important these clinical trials were in the past. It’s why survival rates are so high now."
Kristen Rogers, mother of Shane, 8,
Shane, a normally buoyant young man, has not escaped the difficult side effects from his treatment.
Balagtas explained that as part of part of standard chemotherapy, Shane was initially started on high-dose steroids. “While patients receiving steroids can experience mild loss of muscle strength, Shane developed a particularly severe form of muscular weakness and eventually required a wheelchair,” he said.
Added Shane’s mother: “He couldn’t hold up his own head. He couldn’t walk. We had to move from a three-level house to a single-story house.”
Because of the severity of his symptoms, Balagtas ordered tests for other potential causes of muscle weakness, but all were negative.
“We could then reassure Shane and his family that the muscular weakness was due to steroid therapy and would be reversible,” he said. “With physical therapy and Shane’s hard work, he was able to regain his muscle strength and is now doing well.”
Kristen Rogers said that in addition to the muscle weakness there were times when all her son wanted to do was sleep, and he had complained of stomach aches, dizziness and headaches. He required several blood transfusions because of low blood counts and sodium drips to balance his fluids. He lost 15 pounds early in his treatment.
“We feel it is really important to monitor his side effects to benefit other kids,” Kristen Rogers says. “Hopefully we can learn from this.”
Shane continues on a tough chemotherapy schedule, but he has regained most of his strength and is back on the playground enjoying the swings and slides with his friends. The family also has a large and extensive network of supporters, bolstered by a group of committed friends and a Facebook page with more than 1,000 dedicated friends from around the world spreading the message, “You got this, Shane!”
His mother is grateful for his progress, and for the multi-faceted care he is receiving from the team of specialists determined to make him well – and to learn from his experience for generations to come.
“Without all the clinical trials from years ago, how would we be where we are now?” she asks. “It’s not until your own child is diagnosed that you understand how important these clinical trials are.”