Thirteen-year-old Aileen Corona wears a sweet, shy smile, and sweatpants that say “life is too short to wear boring clothes.” She loves the color pink, painting nails and shopping for sparkly jewelry. She’s hoping to sing in her school concert tonight—if she’s finished with her chemotherapy infusion in time.
A FIRE DRILL AND A TWIST OF FATE
Aileen’s happy-go-lucky life took an unexpected turn in 2013 during a school fire drill in her hometown of LaPorte, Ind. “We were sitting on the floor and I tried to get up, and I just heard a crack,” Aileen explains quietly during a chemotherapy appointment. Intense pain in her left leg led her parents to seek care from their local pediatrician, Dr. Usama Moustafa. X-rays revealed a fracture and also something more alarming—a tumor. Aileen was sent straight to Riley Hospital for Children at Indiana University Health. “Our family doctor told us they thought it was cancerous,” recalls her father, Alejandro Corona. “My wife and I were the ones who took the news hard.”
BATTLING AN AGGRESSIVE FOE
Aileen was diagnosed with osteosarcoma, and Pediatric Oncologists at Riley began developing a plan to attack her cancer. Riley Orthopedic Surgeon Dan Wurtz, M.D., surgically removed the cancerous bone and performed a limb sparing reconstruction with a special metal prosthetic device. Chemotherapy for the better part of a year allowed her to achieve remission.
But Aileen’s cancer came back, this time affecting her lungs. Riley surgeon Fred Rescorla, M.D., removed the tumor that had spread to her lungs twice. When the cancer returned for a third time, it was in a location that could not be surgically removed. Aileen then began a new chemotherapy regimen coordinated between Riley and South Bend Memorial Hospital so that portions of her treatment could be done close to home.
Unfortunately, the tumors did not shrink and new ones were identified in her lungs. In April 2016, Aileen became the first Riley patient to enroll in a Phase 2 study of Glembatumumab Vedotin, an antibody that is directed against osteosarcoma tumor cells. Riley is one of only 21 pediatric hospitals in the United States that can offer this experimental clinical trial as a member of the Phase 1 Consortium of the Children’s Oncology Group.
Aileen was also referred to the Riley Pediatric Precision Genomics Program to evaluate the genetic abnormalities in her osteosarcoma tumor cells to identify therapies that could target her specific cancer. Riley Children’s Foundation donors have helped launch this rare and innovative program, which uses genetic testing to tailor more precise and effective treatments for children with aggressive cancers.
“Osteosarcoma is probably one of the most challenging diseases to treat at the time of relapse,” explains Riley Hematology/Oncology Section Chief Jamie Renbarger, M.D., who leads the Pediatric Precision Genomics program. The team includes physicians and nurses who see children in the clinic, as well as lab investigators in the Wells Center for Pediatric Research, attached to Riley Hospital. “Often the disease that comes back has unique characteristics that make it more aggressive. We are really focusing our efforts on kids with relapsed or refractory cancer—a population of patients where we know that our likelihood of curing them is very low, often less than 10 percent.”
SHAPING THE FUTURE OF CANCER CARE
In Aileen’s case, genetic testing helped them rule out treatment options that were not likely to be effective, and confirmed that the trial she is enrolled in is a good option for her. “It helps a lot to know what step to take next,” says Alejandro. His family is grateful for donors who support Riley’s rapidly growing research programs. “It means a lot to us,” he says. “If nobody donated, science wouldn’t move on to find cures. It’s a great thing that they’re doing.”
Dr. Renbarger’s goal is to ultimately improve cancer treatment protocols for all children in order to prevent relapses. “By supporting this program, donors are helping to give kids time, and a hope for something that will work well to treat their cancer,” she explains. “This program is shaping the future of how we practice pediatric cancer care. There are very few pediatric institutions that are doing this on a routine basis in kids with aggressive cancers. Philanthropy has been crucial.”
In spite of all she has been through, Aileen is beginning this new chapter in her cancer treatment with few complaints. When asked to name her greatest wish, Aileen shows compassion that transcends her own personal battle: “No more diseases.”