I wanted to post – but my thought are all over the place.
We are waiting to hear when we will go to New York for Nathan’s scans. This time next week we could be there but as of right now we haven’t a clue. I hate how last-minute these things are.
There are three senarios for what will happen.
1. Nathan’s scans are the same worse than at relapse. They have nothing to offer him. We come home. Mild chemo?, Hopspice?
2. Nathan’s scans are improved. They have a trial for him but he needs to wait for an opening so we come home for a week or two and go back.
3. Nathan’s scans are improved. He starts a trial right away. We are there for many weeks.
So – when will come home? What will we be doing? All unknown.
There is another child with relapsed neuroblastoma at Nathan’s clinic. She is friends with my hairdresser and we talk on the phone from time to time. I talked to her yesterday. They have decided to stop treatment on her daughter (who is five). She has called hospice and been to the funeral home. We talked about how she came to the decision and was actually able to make it. Her answer was that is was prayer. For now, her daughter feels great and is able to run around and ride her bike. They think she may make it to Halloween but doubt she’ll make it to Thanksgiving.
I just keep hoping that it is a long time before we are where she is….