Oncology Report

Another long afternoon at Primary Children's. This time it was to meet the "new" neuro-oncologist who has been there since last spring and helps design protocols for all the brain tumor kids. We waited for an hour, and kept waiting a little longer, then a nurse popped in to let us know that there were actually two neuro-oncologists and we'd be seeing the doctor who's been working at Primary Children's for 20 years. Dr. Bruggers is the same one we talked to last year about this time and was absolutely wonderful.

She came in a few minutes later and spent over an hour explaining what the options are for JPAs - 1. Radiation since Sada's over 10 now, 2. Chemo combinations, 3. Another surgery when needed, and 4. Watch and wait to see how the tumors behave themselves then decide what to do. Right now, JPAs don't really respond across the board to any of the options - depends on the child, the tumor location and a hundred other variables they haven't been able to pinpoint. Sometimes the treatments help and sometimes they slow the growth down until the treatments are finished then the tumors grow like a high-grade tumor. Which means that unless there's a real necessity to try something because surgery isn't an option due to location, the entire brain tumor team - neuro-oncologists and neurosurgeons - would rather wait and see what happens every three months on the MRI than try something else that might have serious long-term side effects without helping the situation.

It was really nice to hear her say she didn't have any suggestions since no one really knows what a "best treatment" is for JPAs. No wonder the learning curve this past year has been so steep... climbing to infinity and beyond is exhausting.