Ila Jean was a healthy 18-month-old when she developed a fever and black eye that caused her mother, Jennifer, to bring her to the family doctor. When the doctor noticed that Ila Jean’s belly was distended, he ordered an ultrasound and blood work as a precaution. During the ultrasound, Jennifer noticed that the ultrasound tech looked concerned and seemed to be taking extra pictures. By the time Jennifer returned home from the doctor with Ila Jean, she had a dozen messages urging her to bring Ila Jean to the hospital immediately. There, the family received the heart breaking news that Ila Jean had stage 4 neuroblastoma.
Neuroblastoma can originate in the adrenal gland, neck, chest, abdomen, or pelvis—Ila Jean had developed a tumor in her abdomen, which the doctor had noticed during Ila Jean’s visit. Ila Jean’s neuroblastoma had metastasized to her bone marrow. About half of all neuroblastoma cases have metastasized by the time they are diagnosed. During her first week in the hospital, Ila Jean had surgery and started chemotherapy. After her fifth round of chemotherapy, she had another surgery to remove part of her tumor. At Sloan Kettering, Ila Jean had antibody therapy to help get rid of any lingering neuroblastoma cells. In January of 2008, Ila Jean was officially cancer free.
After treatment, the family resumed life as best they could. However, the fear of relapse hovered in the background. In May of 2011, the Rathbone family received the news they had dreaded: Ila Jean had relapsed. Doctors found another tumor in her abdomen but they were hopeful that the surgery to remove the tumor and more chemotherapy would bring Ila Jean’s disease into remission. In December of that year, the family received more devastating news: Ila Jean’s doctors found that her tumors had spread. Ila Jean bravely endured 27 rounds of low dose chemotherapy and prepared for more surgery. Shortly before scheduling the surgery, doctors noticed that the cancer had continued to spread and recommended an NIH trial for Ila Jean. After several weeks on the trial without improvement, Ila Jean went home with her family to enjoy life as much she could outside of the hospital. After a courageous fight, Ila Jean lost her battle with cancer on April 2.