Changing Directions

Hey Everyone!

Welp, we are not going to Rochester, MN anymore (I know, I was really looking forward to it...). Here is how the past week went down:

We had set up two appointments last week: one that was supposed to be at UAB on Thursday and one at Vanderbilt with Dr. Thompson the following Friday.

I was hell bent that we would not be attending the one at UAB. In my mind, it was just one more unnecessary appointment because we were going to Mayo. After a lot of back and forth with Elizabeth, we decided to cancel it. I honestly didn't want to go to Vanderbilt either, but as luck (or God) would have it, I had already made reservations for the Marriott at Vanderbilt and it was too late to get a refund, so Liz and I compromised and just went to Vandy.

As we sat in Dr. Thompson's office, I read between the lines that he was urging us to NOT operate on this tumor. Coming from a man who has performed over 4,000 brain tumor surgeries, this is a high risk, low reward scenario.  In his words, "this is the tip of the iceberg", meaning this disease is incredibly invasive and most of its "web" will not show up on the MRIs - therefore, making it extremely hard to remove the whole thing (again). Going to Mayo for the measles trial would mean resecting the tumor and having a measles virus injected into the tumor cavity. The location of the tumor is near my fine motor skills and that resecting the tumor a second time would be damn hard without some sort of complication (stroke, brain bleeding, paralysis, etc...).

But we are not giving up. He suggested a trial with a drug called Nivolumab. It is called a 'check-point inhibitor' and has a better 'risk to reward' ratio when it comes to quality of life, which is most important to me. Glioblastoma has a way of shutting down the immune system and this drug reactivates it. Dr. Thompson seemed very excited about it (it is considered an immunotherapy) because it actually stimulates T-Cells to kill the cancer cells. This kind of drug didn't exist two years ago, so in a way this is a breakthrough drug.

After speaking with Dr. Nabors, from UAB, on the phone (the call was prompted by Dr. Thompson), we found an ongoing trial at UAB that includes Nivolumab and another 'check point inhibitor' to see if there is any therapeutic effect of adding a second check point inhibitor. 

So, we are changing directions based on the words of someone who has done countless recurrent glioblastoma surgeries, and says it never ends well and we could potentially be sacrificing quality of life and (more than likely) end up in the same place three months down the road.

We made sure that anything we are thinking about doing doesn't exclude us from surgical (oncolytic virus) approaches (UAB also has a trial for a modified herpes virus that is much like the polio virus at Duke) so we still have those options available to us if we need them down the road.

The reality is- this is a very invasive cancer, and we have to determine what is best for our family: living life with my right side paralyzed for 10 years doesn't compare to 2 or 3 years of a great life- where I am there for my family and  can run as many trails that I can. Dr. Thompson said, "Running is better than chemo, and has no effect on seizures". Liz still debates that ;) 

As I look back on this past weekend, God's guiding hand was (and continues to be) all over it.. For those who don't know me, I have a one track mind (at that point it was Mayo). I would have not listened to anything that the well-meaning doctor at UAB had to say. It took a cancelled appointment for me to go where I needed to go first: Vanderbilt.

At Vanderbilt, we saw Dr. Reid Thompson - the doctor who performed my first surgery and would trust with my life (literally). As said above, he urged me to reach out to Dr. Nabors (UAB) about this drug trial first. Which sparked the huge change in direction. We should have an appointment with Dr. Nabors this week to complete some blood work to make sure I qualify for this trial. 

That night, after everything was over, we ate at PF Changs. After finishing the meal, the waitress brought out our fortune cookies. This was mine:

God even shows up in fortune cookies

I want to personally thank everyone for your prayers. 

much love,

Nate