Wow! What a week. We have driven to John’s Hopkins(Baltimore) on Monday, north to Yale (New Haven) on Wednesday for a Thursday appointment, and then south to Memorial Sloan Kettering (in NJ) on Thursday, and then home on Friday. There is some debate on treatment plans, but what can be agreed on is that the house is on fire and something needs to be done. That doing something might be just waiting for larger symptoms like more vision loss or a seizure. The other option we have been given is to go in with guns blazing and hit the tumor hard with radiation and risk a 1:10 chance of permanent damage.

I think we’ve stirred up enough questions to get the specialists to debate further. My case is being sent to several tumor boards and I’m trying to talk with family and spend some time alone to figure out what I want to do. When you’re told treatment is not curative, choices become harder.

The tumor is super rare— it’s not well known within the NF community or at all. Call it God or serendipity, Abbey met someone on FB whose spouse has NF1 and a mid-brain diffuse tumor just like me. To make this story extra special, they too were having a meeting with Sloan Kettering today and we had lunch with them. We shared our treatment stories and we are going to stay in touch as we traverse the challenges.