UAB and The Running People

Hey everyone!

Here’s an update on the phase 1 drug trial I am participating in at University of Alabama at Birmingham (UAB). I will warn you, it may be like reading a medical journal, but we have done our best to explain it in simple terms.

Nivolumab: is a monoclonal antibody, which is called a biological drug. Monoclonal antibodies are large proteins made by your body or they can be artificially created in a laboratory. Nivolumab is artificially created. It binds to and blocks a protein in your body called Programmed cell death protein 1 (PD-1). PD-1 blocks the activation of T-Cells, which is bad because we want T-Cells to be activated.

Basically, Nivolumab is the drug that gets your own immune system revved up; like how they turn an everyday Chevy Impala into an Impala with a nascar engine. I get Nivolumab, every two weeks, through an iv infusion at Birmingham. Which means we will been spending every two weeks in the Iron City.

Epacadostat: is a chemical drug that STOPS a protein (enzyme) in your body called IDO1. IDO1 plays a role in blocking your immune system. 

For example, when women get pregnant, their bodies try to fight off the foreign thing (the fetus) and would immediately abort it. The neat thing about the miracle of birth is that the fetus, at an early stage, produces this IDO1 enzyme that blocks the mother’s immune system from aborting the baby. So, if the fetus didn’t produce that enzyme, they’d automatically be aborted by the mom’s immune system. Cancer uses the same IDO1 protein to hide from the body's own immune system. Epacadostat is IDO1 inhibitor, which means it will, hopefully, tear down the cancer's shield and expose it to my revved up immune system.

Nivolumab is FDA approved for other types of cancer, but isn't for brain cancer. The reason being, most cancers, in other parts of the body, can withstand T-Cells (cancer fighters) rushing in all at once, but the brain has nowhere to expand due to the skull. This can cause brain swelling, which results in more frequent seizure activity, which results in more steriods, which results in halting the trial for a while. Whew, that is a set of dominos I surely don't want falling.

It is still in a phase 1 (out of 4 phases, with the 4th one being FDA approval), because combining these two drugs has never been done before, and I am only UAB's 4th glioblastoma patient. The novelty of it is exciting, but at this stage, they don't really know the side effects - I am their so called "test subject". They know it will most likely cause more frequent seizure activity and some rashes, but outside of that, they are still finding out the side effects.

So, with the knowledge of how all of this actually works, we set off for UAB for day one of the trial..

Recap of Day 1

We got to the hospital at 7am central time. First, they drew blood to have lab work done to make sure everything looked ok before I got my infusion. As we were waiting on the blood work results, we met with Dr. Saleh (pronounced Sah-Lee), who is the Doc running this trial. We like Dr. Saleh a lot. He told me, “I’ve been waiting to be famous for a while. I do think that you just may be my guy.”  :) You can totally tell he believes in this trial and has a lot of faith that it will help me.

After Dr. Saleh left and we got the green light from the blood work, I received the infusion of Nivolumab (pronounced nev-vol-lou-mab - finally asked the nurse how to say it). The actual infusion only took 30 minutes. I also had to take the other drug (Epacadostat) orally. I'll take this drug (3 pills) twice a day - so I'll be taking it with all of my other meds. I'll take it every single day. So, why are we here for 8 hours? Well, the first two times (Day 1 and Day 15) are long days because every two hours, they’re drawing blood from me to check/measure things like when the drug peaks in my system, etc… These measurements are strictly for the drug company.

The rest of the appointments should take around 3 hours. (30 minutes for the infusion and the rest is blood work and waiting on the results).

The first appointment was last Wednesday (5/4), and all in all, I feel great! It took me a few days to get to used to the new oral drug I take (epacadostat), but other than that, all is good. Dr. Saleh did say that it may take a few infusions for the Nivolumab to start working (since it is basically changing my cellular structure) and so I won't feel the possible brain swelling for approximately six more weeks.

So, that's kind of it in a nutshell, albeit a big nutshell!

If you are still reading this, I applaud you haha, but I do want to mention that our company, Bellhops, put on an AMAZING fundraiser for me, called Homers for Heroes. It was a bracketed home run derby, with 16 local businesses, that went off without a hitch. For all those who came, I can't thank you enough. The love and support from this community and surrounding communities is truly amazing. I am always in awe at how generous and kind people can be.

I promise, last thing, I listened to a book called Born to Run on audible, and it talks about this tribe in Mexico called 'the running people' or tarahumara. The book talks about how they can run for hundreds of miles at a quick pace and could (actually, proven in the book) outrun the top ultra-marathon athletes in sandals that they call huaraches . This little, poor tribe could have all the sponsorship money that the sport has to offer if they chose to run in the big ultra races. But they don't run in the big races. Instead, they live in little caves in Copper Canyon and choose to be like ghosts. Why? Because they just love to run. They don't want the attention or sponsorship money. They live a quiet life and depend on their community for survival. What's mine is also yours is their mentality, and it's ingrained into their being. If I have excess corn, it is also yours. If I have extra chia seeds, you take them. 

What an amazing thing to read about people like this that still exist in this day and age when consumerism is all around us. They are so selfless, when we are so selfish. The Tarahumara are more Christ-like than we will probably ever be. 

Philippians 2:3-4:  

"Do nothing from selfishness or empty conceit, but with humility of mind, regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interest of others."

Whether it's the continued prayers or donations, you all have been like the Tarahumara to me and my family, and for that, we can't thank you enough.

much love,
Nathan


Here are some pics from the fundraiser:

Jack-a-roo

Me, Jack and Liz

Me and my Dad

The two guys on the ends (Brett Carroll and Branton Phillips) won it for us. Cameron Doody won the day by putting this whole thing together, which was a HUGE undertaking.

My sis and mom

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

Running and Readings

Nathan has a brain MRI scan at Vanderbilt this coming Tuesday and the results will be given at 8:30 Wednesday morning. The oncologist orders a MRI every 2 months and that is the standard schedule, as long as no new cancer growth is detected in the scans. As the day of the scan report approaches, they are increasingly full of anxious anticipation for all of us, as you can imagine. We would so appreciate your prayers for a good scan this week.

Other than brain cancer, Nathan is the healthiest person I know. He militantly remains on his ketosis diet. He eats only organic foods, refuses anything embedded with a long-syllabled chemical name, goes to work each day (when he is not taking chemo) and has taken up running… in a big way.

On March 6^th, he ran the Chattanooga Half Marathon (7:45/mile pace). There was a film crew that documented his training and race. I am not sure where or when this will be aired but I will let you know once it is announced. The week of the race, he was also featured on the front page of the Chattanooga Free Press. Here is the link to the article:

http://www.timesfreepress.com/news/local/story/2016/mar/03/taking-temodar-instead-tylenol-one-local-mpac/353136/

In addition to road racing, he has also taken up trail running. This morning, he ran in a 10 mile trail race and finished in the top 25%. I mention all of that to say that he is truly doing well, and to his disciple credit, trying to do all he can to give himself the best chance to beat brain cancer.

Elizabeth (wife), Jack (son), Yetti (dog) and Toodles (rabbit) are all doing fine. Elizabeth has just been a wonderful wife during all this. She has the patience of Job and has faithfully cared for Nathan during so many times when her heart was hurting and her tanks were on fumes. God bless Elizabeth and all the caregivers.

As we celebrate the Resurrection of our Lord tomorrow, it is a powerful reminder of the truth that we serve a LIVING Lord, a God so infinitely great and yet so individually concerned for each of us. As Isaiah declared, “The arm of the LORD is not too short to save.” Amen. That mighty arm of the Lord can reach deeper than death itself. That is Good News for everyone and particularly good news to an anxious family this week!

We are so grateful for your loving support, acts of service and so many faithful prayers that have truly made a difference!

 

Buddy Sexton

LOTR and Christianity

Hey! It's me.. again.

So a little back story on me when I was in middle school and high school: I used to LOVE Lord of the Rings... it was a little obsessive, I'll admit, and it followed me into my adult life when I tried to get Liz to let me have The Ring as my wedding ring (halfway joking, but yes, I bought a replica of The Ring online in high school, and I am not ashamed of it). But something inside me has been yearning to re-read LOTR. Maybe it is a subconscious way of escaping all this crap and going back to a place and time when there was no brain tumor, no seizures, etc. Back when all I had to worry about was what was for dinner (and it was always amazing) and homework (which I never did).

As I reflect on LOTR with the perspective I have now, I see it has a lot of Christian themes throughout the book.

As I tend to do, I started doing a little research on the topic, and Tolkien (the author of LOTR) was a Christian, but never meant the LOTR series to be an allegory (and example of an allegory would be CS Lewis's Chronicles of Narnia, where the Lion is supposed to be an exact representation of Jesus). Tolkien believed that his views and beliefs would come out in his work without him having to insert it in directly... and he was right.

The Ring

The Ring (represents evil and the idols in our lives) was created by the dark lord, Sauron, to gain power over all the world. Long story short, it was cut off Sauron's hand and found its way to the unlikeliest of creatures: a hobbit (small creatures with hairy feet and not fond of anything outside of their home, The Shire) by the name of Frodo Baggins.

Throughout the story, everyone who comes into contact with The Ring feels the power and temptation of it. It doesn't matter if they are powerful wizards or great Elven Kings, the ring deceives them into thinking they can use it for good, when in reality, it is just a way for them to justify not destroying the ring. But the hobbit Frodo seems to deal with the temptation of the ring exceptionally well, and is tasked with taking The Ring to the one place it can be destroyed: Mt. Doom.

Isn't that how God works? Using the weak and small to do his greatest work? As it is written in 2 Corinthians 12:9

"9 My grace is sufficient for you, for my power is made perfect in weakness."

Frodo was hand picked to carry out this unthinkable task of returning to Mt. Doom to destroy the ring, because of his resilience towards it. But he didn't go alone, he had a fellowship of people that went with him. They held him accountable through the journey and showed him love and compassion all along the way. God made us to show love and be connected to each other on a deep level and in the darkest times. In the last book of the series, one of the original fellowship members, Sam, is at the foot of Mt. Doom with Frodo. Frodo can't go on due to the power of the ring sucking him dry and Sam said,

"Come, Mr. Frodo! I can't carry [The Ring] for you, but I can carry you!"

We need those kind of friendships. Ones that will carry you through the hardest of times and still love you. It's a Godly, unconditional love.


We Can't Do it Alone

Once Frodo reaches the peak of Mt. Doom he can't seem to find the will to drop the ring into the fire (the only place it can be destroyed). He is tempted by the same thoughts of power that has affected everyone throughout the journey, but then something amazing happens.. Another creature, Gollum, who used to possess the ring, was drawn to its power and frequently called it 'my precious'. Gollum had been tracking Frodo all the way to Mt. Doom, and he eventually found Frodo on the edge of Mt. Doom about to do the unthinkable deed (in Gollum's mind) of destroying the ring. Out of pure desperation, Gollum grabbed the ring from Frodo, slipped and fell into the fire, thus destroying the ring.

The theme here is we can't defeat whatever evil is inside of us alone. We need a Gollum of our own to intervene and save us from our evil, idolatrous ways.

We need God to come into our lives and help us destroy whatever evil lives in our hearts, because we can't do it alone. God has to intervene and be our Gollum.

I apologize if this doesn't make sense to those who haven't read the books or seen the movies, but I did the best I could to pack about 1,200 pages into just a couple!

much love,
Nathan

Faith and Heaven

Hey Everyone!

(Spoiler Alert for people who haven't seen Room)



I watched the movie Room and it was such a great metaphor about faith and how Heaven will be that I had to write about it. 

This movie is not about Heaven at all. It is actually about two people that were held captive for years in an enclosed space. A woman, Joy - frequently called Ma, and her young son, named Jack, finally gain their freedom, allowing the boy to experience the outside world for the first time. 

Jack was born in 'Room' and had never been outside of it. He was so used to living in it and didn't know anything different. His 'Ma' tells him of the outside world and what it is like. He initially didn't trust his mother and didn't believe what she said about the outside world. He didn't believe that 'TV' people were real people. He didn't believe there were dogs, just cartoon dogs. Slowly, he began to have faith and trust what she was saying. When Jack initially escapes and starts to see things he had only heard about through his mom, he was stunned - trees, dogs, grass, cars, etc - it was all real!

Aren't we so similar to Jack? We get so comfortable on Earth and we don't trust God when he says in John 14:2-4:

"2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going."

We often don't think about death because it is a "scary" subject. I have had the privilege (yes, privilege) of coming to terms with something we are all going to do at some point: die. Do I have my struggles? Sure, we wouldn't be human if we did not get scared every now and then, but the great thing is I do trust God and have faith that he will bring me to one of his many rooms when it is my time.

Not a very smooth transition, but wanted to give a quick update on what's ahead for me and my family: 
- Liz completed her first 5k!! She was there to support me on Sunday when I ran the half marathon in 1:41:07!!
- March 29th we are heading back up to Vandy for another scan. 
- We have the results meeting the following morning, so please keep us in your prayers during that time.

As always thank you for all the prayers and continued support from those near and far!

much love,
Nathan

Slowing Down my Pace

Hey Everyone!

Here's an update on what's been going on the past couple months:

• We went to Vandy for our MRI scan in January and there was a 'suspicious' spot, so he wanted us to come back in February for another scan (typically, they do an MRI every two months, so this was an exception. He wanted to see if it changed over the course of the month). 

• So we went back up to Vandy the first week of February. This time the MRI showed that the spot hadn't changed at all - which is great news and means no regrowth for now. There is a chance the 'suspicious spot' is scar tissue -which would be amazing- but Dr. Moots didn't want to label it unless it stays the same for about a year. Here is the most recent MRI pic:

The scan on the left is the most recent (Feb) and the one on the right is January's Scan

• We don't have to go back up to Vandy for another scan until the last week of March! We celebrated the good news with my Mom, Dad and Step-mom in Nashville.

• My 4th cycle of Chemo was terrible. They increased the dose 20%, and I felt nauseous and didn't have an appetite. I am currently in the middle of my 5th cycle of Chemo (I will stay on the increased dosage from here on out), and this time I feel much better. I can't really figure out this Chemo stuff!

My Dad and I were talking over the weekend about the half-marathon I am training for. We were both sprinters in high school. I ran the 110m high hurdles, 300m hurdles, and 400m. We started talking about how if we are going to have pain, we want it all at once, but it can't last long. Pain compacted into short periods of time. That's how I am built, but I think God is trying to teach me something with this half-marathon...

I recently spoke with someone who is writing a story on the marathon and wanted to interview me about why I wanted to do it... I told her, "I think God is trying to teach me a lesson: to be able to endure pain over longer periods of time and to slow down my pace, not only in the race but in life as well."

So often, I try to rush through the pain, sometimes not even acknowledging it, because that is how I have coped with things in the past. God is trying to prepare me and my family for a long journey with this battle. Where it leads? I don't know, but I truly trust whatever happens next is God's will, and I know there is more pain ahead. There is for all of us, but with God's strength, nothing can defeat us. 

As it's written in Psalm 46:1-3,

"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging."

I will leave you all with a excerpt from Upside to Adversity that has really stuck with me, and taught me God is using whatever pain we are going through to mold and shape us to be more like Him:

"Someone once described suffering as God's manure for spiritual growth. Manure is not the most pleasant substance in the world, but we can't deny that it promotes growth. No matter what happens in our lives, we know that nothing happens without God's foreknowledge and permission. He always knows what we are going through-and why. God has a plan for the "manure" of our affliction. It is not a plan to hurt us, but to heal us and help us grow."

As always, thank you to those who continue to keep our family in your prayers!

Much Love,

Nathan