My son had scans back in January, things looked decent after radiation on a spot behind his eye. We used Etoposide, and it lasted us until about September when shoulder pain didn’t go away. Scans in the first part of October showed new masses along his spine and his curie score came out to be 19/30.
At that time, I asked for his doctor to contact the doctor in a bigger city to try for trials knowing that some were open as we had been in contact. I also followed up with radiation as a possible way to start working on those masses.
Our home oncologist failed to do so, wasting a week. Not only that, she said the team refused to continue treatment and we needed to look into hospice. Wasting another half week. My son was walking at that time.
I wasn’t feeling right about the situation, and contacted the other doctor who agreed to see my son, but by the time we got there a week later my son lost all ability to walk(with little feeling), urinate, and have bowel movements. He no longer qualified. So we headed home.
His home doctor has asked every appointment to sign a DNR, and they have become rude, and almost aggressive about it. My son is still 100% mentally here, and it doesn’t feel right so I remain firm. Why would they push the topic and paint gruesome images in my head? The social worker even joked I’d be arrested because we decided to do home hospice and if the coroner comes, the cops come and will question me.
I’ve contacted MSK, but I’m so worried we have already wasted irreplaceable time? What trials are open there? What other hospitals can I look into? We are from Washington.