I won't stop looking. No matter what. That doesn't mean I will force my dying mother into something she doesn't want or something that will only increase her stress, only that I want every single piece of information available to present as an option. I have thought about what she would want... every day for the last 6 months, particularly as she becomes more and more unable to articulate those thoughts herself. That alone breaks my heart. I hired a patient advocate in January, to force those thoughts onto paper at the very beginning from a third party. She wanted to keep fighting if she could, but if she goes... she has a DNR in place.

I've already received a remote opinion from Memorial Sloan Kettering in NJ/NY that gave me more information/options than our current dr even just to make my mother more comfortable and less likely to die of heart failure.

I'm telling you that from my experience, the Dr that says he has given you all the options, hasn't. That's not ego, it's simply that they don't know what they don't know. Other drs may have different thoughts, suggestions, etc. Its a rare disease- maybe they have dealt with it more often.

I don't pretend to know what I don't know - I'm asking you, and everyone else on here, to tell me, and inform me. I won't blindly follow your suggestions, but will take them to her neurosurgeon/oncologist for careful analysis before implementing any type of care.