Elliot Johnson Elliot's Story

Early in 2016 Elliot began having seizures. An MRI in March showed what looked like a congenital malformation and we tried different seizure meds  to try and control them. Nothing was working. By June Elliot was having about 6 seizures a day, where he would fall down. Our neurologist ordered another MRI and to everyone's surprise, there was a tumor in his right temporal lobe, clear as day. It had grown so quickly. Within a week Elliot was in brain surgery and the tumor was completely removed--or so we all thought. Thanks be to God, Elliot's seizures stopped immediately after surgery, and he has been seizure-free ever since!


In October, a routine MRI showed that the tumor had returned. Elliot immediately went in for another surgery. Again, it was a complete resection (it looked like all the tumor was removed.) But, in February 2017, it was back. This March Elliot had his third brain surgery in a year. This time he had a significant amount of his temporal lobe removed in the hope that all the tumor cells would be removed.


To do more surgery at this point would be more dangerous. In March Elliot joined a clinical trial that analyzed his DNA and looked for drugs that might work on his tumor. He started chemotherapy in May. At the same time we are trying to kill the cells with proton beam radiation, which we are currently receiving at the Mayo Clinic. Elliot and his sisters and I (Katie) are living in Rochester, MN for 6+ weeks while the lovely doctors, nurses and coordinators take care of Elliot.