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

Decisions...Decisions...

Hey everyone,

It's Elizabeth, and here is an update on our past month.

On March 29th & 30th, we went to Vanderbilt for Nathan's routine scan. It's always a nerve-racking experience, because we're always afraid of the worst: regrowth. Well, after 5 months of clean scans, tumor regrowth showed its ugly face. We were a little caught off guard, since Nathan had been doing so well. He ran a half marathon in the beginning of March and a 10 mile trail race a few weeks later.

The doctor said the regrowth was minimal at this point (maybe 2 cm in size). He recommended that we end chemo and start to look into clinical trials.
   *Side note: Some people have asked why did he stop chemo?...Couldn't it be taken as a precautionary measure until he finds a clinical trial? Actually, no. For a lot of clinical trials, you have to have chemo out of your system for at least 4 weeks. So, because of that reason, and the fact that chemo just wasn't working, Nathan ended his hated relationship with chemo.

For the past two weeks, we have been glued to our computers researching clinical trials all over the country.
   *Another side note: For those who have (fortunately) not had to search through countless clinical trials, I'll give you some insight: it is extremely overwhelming and stressful. It doesn't help that reading through these trials that are filled with constant medical jargon might be the most confusing things I've ever read. Plus, to add more stress to the situation, this is literally a life or death decision that we're making. Talk about pressure. So, Nathan's prayers have consistently been asking for God to close doors that needed to be closed. As in: we don't want to go down paths that lead us nowhere and are counterproductive. So, back to the story..

We applied to Duke's clinical trial that involves injecting the polio virus into the tumor (as seen on 60 minutes). Unfortunately, Nathan wasn't a candidate for that trial because the location of his tumor. So, that door is closed. Thank you, God, for closing that door early on and answering our prayers.

Switching gears - this past Sunday, Nathan ran in another trail race. He placed 4th overall. Even though I've been telling him he needs to slow down - literally and figuratively - he continues to impress me. However, that night, he had two grand mal seizures. He was taken to the ER via ambulance from our house where they checked his labs and monitored him. While we were in the ER, he had his second grand mal seizure. Seizures are always a frightening experience for the both of us, but he seems like he's recovering better than he has from his past seizures. However, these seizures have caused more of a sense of urgency to have a clinical trial plan underway. We cancelled our trip to Paris (we would be leaving this Sunday) and traded it for a trip to Minnesota (I'll explain later). We'll just grab some French wine and some cheese curds, and it'll be just like Paris, eh?

So, now that everyone is caught up, where are we now? Well, currently, we are in Nashville. We have an appointment with our doctors so they can help us navigate through these murky waters (aka clinical trials) and gather their wisdom on the best trials/options for Nathan.

On a hopeful note - we've been in contact with Mayo Clinic in Rochester, Minnesota. Just this week, we found out that Nathan is a potential candidate for a clinical trial that involves the measles virus (much like the polio virus from Duke). You can read more about it here.

So, long story short, we are flying out to Rochester on Monday to learn more about this trial and to complete some blood tests. If Nathan's tests come back favorable, we'll proceed with a biopsy. After a stay in the hospital + a few days to recover from the biopsy, Nathan will have his surgery. The surgery will be another craniotomy. The surgeon will resect the tumor and then inject the measles virus into the tumor cavity. I don't know the specifics yet - but we'll know more (probably than we've ever cared to know about the measles virus) on Tuesday or Wednesday of next week.

The first hurdle: blood tests. If these tests don't come back favorable, then Nathan is kicked out of the trial and we're back at square one. So, while we are praying for God to open or close certain doors, please pray that it will be clear if this is the right or wrong path for us.

If all goes well and they move forward with the surgery, we plan to stay in Minnesota for at least 3 weeks (so Nathan can recover and we'll already be up there for his follow up appointment). Please also pray for strength for the both of us. This will be the longest time that we'll go without seeing Jack (who is staying with my parents), and I know it will be extremely difficult.

Thank you for continued prayers. Thank you to our friends and family who have gone above and beyond already - surrounding us in support. We love you all and will keep you updated when the time comes!

Love,
Elizabeth

After Nathan finished the River Gorge Trail Race