So you're saying there's a chance. . .

We just returned to the hotel room after a very long day (9hrs -- and we left the room at 11am). There was quite a bit of waiting, a lot of discussions with the billing department, verifying medication lists (who knew that could take nearly 90 minutes to do THAT?), neurological exams, and finally at the end of the day meeting up with our neurologist that has been following us all along.

Doctor walked in (after the neuro exam/memory test was completed), and asked how Dad was doing. Dad answered, "Well, the tumors growing and I want to find out what my options are." The doctor quickly corrected Dad and said, "Something has changed. We don't know what yet." He said many times that Dad is presenting too well (meaning he cleared the tests and exams with flying colors) to have it for sure be a tumor growing inside of his head. He kept saying, "This is why we treat the patient. Not the test results."

He's not ruling out necrosis (which is a result of treatments of radiation/chemo). He was very clear in saying that it still could be a very angry tumor (likely Grade IV), but that he really wanted to find out for sure before we decide the next path of treatment. Couple of reasons for that:

• If it is necrosis (which in this situation would be good news), there is no reason to put his body through the harsh chemo treatments for a Grade IV treatment.
• If it is Grade IV, there are treatments that are cutting edge only available to patients that are documented at Grade IV. Currently, Dad is on record as having Grade III. It's worth the risk to find out to allow him the best possible treatments.

They're going to be running tests tomorrow prior to meeting up with the Neurosurgeon - including an ultrasound to make sure that the blood clots from last summer are completely gone before he comes off of the blood thinners. We don't know yet when surgery would be (possibly Friday. Possibly early next week). If it's early next week, we'd head home for the weekend to meet the new baby in Omaha.

Doctor did say that surgical debulking of the tumor would not likely be an option due to the harm it would do in getting removed. He said he'd wait for the neurosurgeon to make that determination, but he felt that it was not an option. Biopsy and follow up treatment based on the results of that are what he recommended.

We feel somewhat buoyed by the news today. Before the appointment, it was pretty grim and we didn't think that necrosis was even an option. Apparently that even this aggressive of "impact" of necrosis is not so rare. He also mentioned that a toxic level of dilantin (anti-seizure medication) could be at play here, resulting in an increase in bad symptoms the past few weeks.

One day at a time, still, but after such a long day, it was so nice to actually have a reason for encouragement. Mayo Clinic is an amazing place, and the trust we have in the care here cannot be equaled. More tomorrow.