Wind taken out of our sails today

The roller coaster ride continues. We all want to get off.

This morning we went in for the PET Scan. This was done to make sure that the biopsy completed on Monday didn't miss any of the most active parts of the tumor. We were filled with hope on Wednesday when the biopsy came back as showing treatment effect and only grade III tumor. We were cautiously optimistic for a reason.

The PET scan came back today indicating a high degree of tumor. According to the neurologst, this is very unusual, but not unique. They've seen it before, but not very often.

So this is what we know - although at this point we really don't know anything for certain. There is treatment effect/necrosis. There is grade III tumor in there as well, but less aggressive than last year. And "something", likely Grade IV tumor, lit up the PET scan like a Christmas tree today, mapping exactly to the MRI scan where suspected tumor was. We have conflicting data, but the PET scans have been known to show false positives (meaning it's wrong), so the following options are on the table:

1. (recommended) Do the surgery. This would be a craniotomy to be done in the hopes that this is still necrosis, and that a bunch of the dead tissue could be suctioned out and make some room. If it is tumor, they can take out what they can safely (not much based on the reports), but at least try to get a better sample for pathology to grade it a IV and get us into the best new treatments possible. Dad would be in the hospital for several days, and there are risks of losing some of his vision, some additional weakness on his left side, and potentially other risks as well. Avastin (or clinical trial drug) would start about three weeks after surgery. Surgery has a chance of doing some good, which is why it's recommended. Surgery is currently scheduled for next Wednesday AM.

2. Go home and start Avastin and chemo combo immediately. If this is necrosis, this would do not much for him, and he would have missed out on the opportunity to get rid of a lot of the tissue that could relax his brain and allow him to regain some of the function he's lost.

3. Do nothing. The neurologist said today that he will tell us when he feels it's time to "quit" trying treatments and let things progress without any intervention. I really don't feel that this is an option, but it was an option given to us.

I think we're going for option one, but there's a lot of discussion to happen this weekend. The neurologist strongly suggested that we stay in Rochester. There's been a decline in Dad's cognitive and physical abilities just in the past week, and the doctor didn't want us to get all the way home and not be able to make it back to Rochester if that's really where we wanted our treatment for Dad. And we do.

Tracy, Rich and the kids are heading North tomorrow morning and will join us for the Memorial Day weekend. I very much look forward (as does Mom) to having some additional support around. The past week has been trying and quite stressful -- including htis morning where Dad "escaped" the room and left us for about 20 minutes. I finally found him in the lobby, but how he got there or where he was the three times I checked the lobby, I don't know.

There is still a chance that the PET scan was showing a false positive, and that this is still radiation necrosis/treatment effect. Please keep that thought and nothing else in your heads this weekend when sharing thoughts, prayers, and good vibes for Dad. We are thankful to be in one of the best places in the world for this type of treatment/surgery.