Surgery to drain fluid and have a biopsy

For those of you following Nathan's journey, here is a post that I made on Facebook about 2 weeks ago.

It just slipped my mind to post this to the blog! I'm so sorry! 

Here is the latest from Nathan's scans this week.... (week of 12-13-16)

So, everything looked good with regard to the tumor. There isn't any regrowth and it looks the same - Praise the Lord!

However - there is an issue with fluid in his tumor cavity... Let me back up and explain:

After his surgery at Vanderbilt, the baseball-sized cavity in his brain filled with fluid over time. When you have some sort of surgery to remove something out of your body, your body will naturally "fill" that space (or cavity) with fluid. So, that is completely normal.

Now that Nathan is on this trial, the T cells that are being "jacked up" from his infusion are hopefully going to the brain and killing the cancer cells. When these T cells kill the cancer cells, they kind of turn into sludge-y fluid (for lack of a better term!) when they eventually die off. This sludge doesn't have anywhere to go, because it's in his brain (due to the blood/brain barrier). For example, if he were to have cancer in his liver and the T cells went to kill the cancer cells there, they would, again, turn into sludge but go into his bloodstream and die off and break down. This can't happen in the brain. They're stuck there, therefore, creating more fluid in his brain over time.

As the fluid gradually grows in size over time, it's acting like a tumor - creating pressure on his brain - which is causing the partial seizures, fatigue, terrible headaches, and weakness on the right side of his body.

SO - what he's going to have to do is get the fluid drained. They said when he does this, he'll feel a lot better - sort of like when the tumor was removed. We don't know about the specifics of the procedure yet. What we DO know is that they want to take a biopsy from the tumor tissue (while they're draining this fluid) to see if the T cells are really doing their job and that they're in the tumor *hopefully* breaking it down. They said the procedure is not too invasive. He'll likely spend one or possibly two nights in the hospital.

The doctors also said that this is not an emergency. We can wait until after the holidays to go through with it.

Just to be clear, this is what the Doctors are thinking - so it's theoretical. They do truly believe that the T cells are breaking down the cancer cells but won't know for sure until they get the pathology report back from the biopsy of the tumor tissue. Nathan is not exactly "excited" about the inevitable surgery but knows that he must do this to feel better. I am so proud of him for his continued positive attitude and strength through all of this.

Nathan's procedure is scheduled for Friday, January 6th. 

We will go down to UAB on the 5th to have a meeting with his surgeon, Dr. Riley. After this meeting, we'll have more details about what to expect with recovery time, what the procedure will look like, etc...  

Thank you all for your prayers. I will update you all when we have more information in the next week.

Much love and many thanks,

Elizabeth

A Year of Running

It was end of November 2015 when I walked into the office for one of my half days and Adam Shearer was pitching the idea of getting a group of Bellhops employees to run in the Chattanooga Half Marathon. I said I was in! I had no idea I would be embarking on a journey that God would use to inspire so many people. He is always one step ahead of us. It is almost funny when I look back at my life and you can just see God’s fingerprints all over it. If I hadn’t walked in at that exact second, I may have not even started running.

About a year ago today (December 2, 2015), I posted my first Strava entry. For those who don’t know about Strava, it tracks all the data on your runs—elevation gain, time spent running, mileage, etc. (you can also use if for bikes, but I don’t bike). Here it was:

3 miles at an 8:39/mi pace and I’m sure my heart was about to explode. If I remember correctly, I think I even had to stop a couple times just to rest.

This past year, here are the numbers, Moneyball style:

Distance: 1,286 miles

Runs: 216

Elevation Gain: 141,325 feet (that is equivalent to running up and down about Mt. Everest 4.75 times)

Time Spent Running: 190h 21min

Races: 8k, 10k, 15k, 10.2 miler, 2 half marathons, 2 50ks, and an attempted 50 miler.

I wish I had some storybook ending to my first year of running. A run through the Marin Headlands and Muir Woods would have been the perfect ending to a great year of running. If it went MY way, I would have come back with a finisher’s medal and stories to tell about the ups and downs of my first 50 miler… but God had a different plan. I had two partial seizures at miles 13 and 18.

I felt great until I had the first partial seizure. Then I gave a runner (later identified as Erik Wilde) my RoadID (thanks Leigh!) because my head and eyes were twitching and I couldn't talk and pulled out my medicine bag and pointed to the two meds that I take when I have a seizure. He told me I didn't look so good and I should probably sit down. I pointed that I was going to keep running and made it another 6 miles before the cardiac aid station before it happened again. At this point, I was out of meds and decided I didn’t want to have a full on grand mal in the middle of the woods where it would have been a bad situation. So I decided the best thing for me to do was to drop. 

Not finishing a race (DNFing) is a very humbling experience. Your pride is shot. I truly think things happen for a reason, and our pastor, Scott Bowen, in a sermon about a month ago, spoke about replacing one idol for another. I didn’t realize it, but I was replacing my workaholic mentality with running. Running was becoming who I was. I wasn’t running because I just enjoyed it anymore (well i still enjoy it). I was running because it defined who I was becoming. I was “the guy from Bellhops who was a ultra marathon runner”.

There is nothing wrong with doing your best and trying to improve upon a time, but I have to remember to keep my priorities in the correct order, and running was creeping up there. I need to get back to being grateful to be able to run and not forget God has given me a gift by allowing me to run.

I really want to thank Bellhops for allowing me to do what I love. The majority of these miles were logged when I should have been at work, but they have been so flexible with me. They have been so amazing to our family, I can’t even begin to explain. I know I always say that, but it is the truth. I also want to thank my incredible wife, Liz, because I know I made her nervous for every minute of those 190 hours and 21 minutes when I was running and for taking care of Jack when I am out on the trails.  

Thank you to Erik for being a literal angel on the trail, and thank you for all who continue to pray for me and my family. Continue praying for us as we go in for an MRI on December 13th. Please pray that these partial seizures are a good thing, and are due to inflammation from the tumor breaking apart.

Here are some pics from the trip and one of me and my trail angel, Erik!

Erik and I after my first partial seizure

Pre-seizure. When I was feeling good and moving!

Liz and I off highway 1!

Mom, Hannah, and me at the Golden Gate Bridge!

Much Love,

Nathan 

Dear Jack

When my journey with glioblastoma first started, I wasn't sure how long God allow me to be on this earth. So, amongst other things, I started writing. Mainly because that was the easiest way to get my thoughts out.

I wanted to do something special for Jack, I did (and am still doing) the youtube channel, but I wanted something he could physically have and hold. So, I decided to write him a book. It was originally just going to be stored on my computer to be viewed by him later, but I started thinking that if this book could just help one other person with any struggles/work life balance issues they may be going through, then it would be worth looking into publishing it.

That is how Dear Jack: Life Lessons from a Brain Tumor Patient to his Two Year Old Son was born.

Dear Jack is written for my son, but all parents can benefit from the life lessons this book teaches. Dear Jack encourages a Christian lifestyle while making parents think about a healthy work-life balance. Parents can use the lessons learned through my personal story to avoid future pitfalls of misplaced priorities.

It is also available on Amazon as a paperback, hardcover, and kindle edition, iBooks as an e-book, and barnesandnoble.com as a paperback or hardcover.

Much Love,

Nathan

The StumpJump

Hey!

I just wanted to give everyone an update on where I am at—both physically and mentally. I am actually doing pretty well in both departments, despite occasional headaches and forgetfulness. This is the best I have felt, physically, in my life.

As most of you already know, I completed the StumpJump 50k (actually it was around 32.9 miles instead of the standard 31 miles) a couple weekends ago. The StumpJump is a trail race with close to 6,000 feet of elevation gain and about 12,000 feet of elevation change. It was a true test both physically and mentally. There were times towards the end when it became all mental. Thoughts raced through my mind, "I want to stop", "I am ok with top 30", "I'll just rest and let a few people pass me". But I wouldn't give in to any of those thoughts. If there is anything I've learned through this whole journey, it is how to be mentally 'strong'. I may not remember where the cups are in my house, but when it comes to being mentally 'strong', I've got that in spades.

Did it hurt? Absolutely, but I put my body to the ultimate test and came out stronger for doing it and am planning on running my first 50 miler this December 3.

The main reason I wanted to write this blog is because of a quote from book I recently read. Dean Karnazes is talking in his book, Ultramarathon Man, about recovering from his first 50 miler:

"As I limped around the office trying to appear natural, I reminded myself that pain and suffering are often the catalysts for life's most profound lessons." 

A good family friend who lost a battle with cancer, Lee Scruggs, had a saying, "we all walk with a limp". Don't we all try to appear natural even though there is stuff going on in our lives that we aren't willing to talk about? I would encourage everyone to get together with a small group of people to discuss the limps in your life. I have done this with a group of guys at Bellhops and it just helps to talk about your own limps and shortcomings—even if it feels like you are just venting.

Karnazes also mentions that through pain and suffering we are often taught profound lessons, and I couldn't agree more. God uses suffering in our lives to teach us. We may not understand the lesson, but I assure you that if you trust Him (something I constantly struggle with), we will come out on the stronger on the other end.

I have another MRI scan next week (Oct. 18), so please keep our family in your thoughts and prayers.

Here are some pics from the race, courtesy of my amazing sister:

Jack and I finishing together!

The fam

My momma

Debbie and Dad

My sis and I!

Much Love,

Nathan

Alinea

What's up everyone!

We got back from UAB last Friday, where we had another MRI. The treatment continues to hold the tumor in a stable state, which is great news! This was a big MRI because it showed that the infusion alone is keeping it stable.

It may be my generation (or that I am generally impatient), but I am ready for the tumor to either start shrinking or progressing—preferably the former. What is that quote from Shawshank Redemption? "You either get busy living or get busy dying". It is morbid thing to say, but that is kinda how I feel. I have to learn to trust God's timing. Sitting still has never been my strong suit. After everything I have gone through, this is the thing I continue to struggle with the most. It so much easier to say it than do it. Trust in God. Trust in God. I can say it all day. I can say it to other people no problem (well, when I can talk ; ) ), but when it comes down to it, am I really trusting God? I don't think so. I am trying, but I am doing a poor job.

I can definitely tell God is trying to make me sit still, because he has stripped me of the one thing that brings me joy—running. I went to the doctor and long story short, I have a Morton's Neuroma. I got a cortisone shot today, so hopefully I can get a few more long training runs in before my first 50k on Oct. 1, but it has really bummed me out (my wife can attest to this, as I am miserable when I can't run). This is definitely God saying to sit still and couldn't be worse timing, but I have no choice in the matter now—he is in control and knows exactly what he is doing.

In a search to find something to do that doesn't involve running, I went fly-fishing (one of the few things I can do) with a friend of mine, Jared Houghton, who told me this crazy story of how he and another one of my friends, Travis Truett, met this guy named Nick Kokonas (the co-owner of this 3-star michelin—the highest rating— restaurant called Alinea) at a party. Long story short, they had no idea who this guy was, and he invited them to have drinks at his restaurant. Jared and Travis were talking about how we had this restaurant in Chattanooga that had the best fried chicken. Not knowing they were in a 3-star michelin restaurant, Nick went back and stopped the kitchen and had them make fried chicken... Needless to say, Jared said it was the best fried chicken he had ever put in his mouth. Eventually, they found out this place was the first episode on this Netflix's show Chef's Table - Season 2. Crazy.

My mom was in town this weekend and she loves cooking shows. I told her about the insane story Jared told me, so we decided to watch that episode. It tells the story of the chef, Grant, and his rise to success—all the awards, the recognition, etc. That is when the story line flips. He had a spot on his tongue that he went to see the doctor about. Cancer. They gave him a 2 month prognosis. He chose to live out his life without going through all the surgery, etc. The story of Grant's cancer, because of him being a world renowned chef, eventually became public knowledge. He was contacted by University of Chicago Medical Center, where he was talked into doing a phase 1 clinical trial (sound familiar?). As he began treatment, he slowly began to lose his taste until it was completely gone (think about all the symptoms I have). The chef who couldn't taste. He had to think of new system of how to get across a certain taste to his staff of cooks. It made him more cerebral, more creative. It forced him to think about things in a different way. This became the "new normal", and he accepted it. At the end of the episode, you learn that he is cancer free. He starts to taste sugar again.. then he starts to taste salt, until he regains all his taste!

My mom and I just sat back and didn't talk after it was over. We are both processors and just had to take time to process what we just watched. I couldn't think of a better message for me to hear. It gave me a hope that I have been longing for—that the tumor will shrink and these symptoms I am having will eventually go away. Maybe God put a neuroma in my foot just so I could go fishing with Jared, hear that story, which would prompt my mom and me to watch that episode. It would be just like God to take a painful neuroma and turn it into a message for me to hear. Nothing in this world is a coincidence.

Thank you for all of those who continue to pray for my family and me! They are working in ways we never expected.

Much Love,
Nathan

Alinea

Locked In My Own Head

Hey everyone!

I wanted to give a quick update about our last two trips to Birmingham:

We headed down to UAB on Tuesday, July 26 to stay at our hotel for our early morning infusion on the 27th. I had some new symptoms that I was worried about—random hand tremors, some depression (despite all the running I have been doing to negate this), short-term memory loss and word finding issues to the point where I literally can not speak. Dr. Saleh said he was 99% sure this was all from the treatment, since I wasn't having any headaches or neurological problems (seizures, right side of the body weaknesses, etc.), but he ordered us to stay another night and get an MRI just to see what was going on under the hood. We proceeded with the scheduled infusion.

The good news that came out of that MRI is the tumor continues to remain stable, so more than likely these new symptoms are from the treatment—yay!

Which brings us to our most recent trip:

We loaded up the car again on August 9th to head down for our infusion appointment on the 10th. Poor Elizabeth was battling a fever and cold. I felt so bad that I told her I could find someone else to take me, but she insisted she wanted to be there for me :) .

At this point, the symptoms I mentioned above have only gotten worse since the July 27th infusion, and Dr. Saleh noticed. He was worried about me and said they could talk to the drug sponsor to see if I could take a break. I said we can re-evaluate come next time, but I would go ahead with the infusion.

I can feel my circle of friends getting smaller and smaller, simply because I am embarrassed that I can't speak sometimes. I am scared of going into work because I may encounter someone who doesn't know what is going on when I have trouble speaking.

For example, one of my fraternity brother's has a podcast, and he asked me to come on and talk about how I grew a team of two to a team of around fifty—mainly on how I coached up a successful crew of millennials for Bellhops. I walked into his office and tried to get out words. I couldn't speak. I knew what I wanted to say, I just couldn't say it. I had to send him a text (with him right in front of me) that I couldn't speak. Talk about embarrassing. He of course understood, but words can't express how frustrating these symptoms are for Liz and I both—her being helpless to the situation and having to watch her once quick on the feet husband diminished to this. These 'episodes' usually last for like 20-30 min, but have been getting longer and longer.

Just today, I was trying to make some keto-friendly brownies and couldn't follow simple directions. I kept having to go back and read from the beginning because I forgot the first step. I finally gave up and went to my room. As I was writing this, I had to think long and hard about how to spell the word fifty.

Sorry, I know I'm venting, but I needed it.

So, I asked Dr. Saleh, while we were in Birmingham, if these symptoms will go away. His response was honest. They don't know. Even in the best case scenario and the tumor shrinks to nothing, he said they really don't know. I guess that's my job :) .

My morning trail run spot - Edward's Point. This is a special place where I can be in the present and enjoy all of God's creation without having to speak.

Thank you to all those who continue to pray for our family. As you can tell, they are much needed right now.

Much Love,

Nathan

A Strong Why Can Endure Any How

Quick Update:

Elizabeth, Debbie, my Dad and I are currently on a plane bound for Sonoma, CA, where my Dad and I will be attempting the Napa to Sonoma half-marathon! Hannah and Cal will be meeting us out here Friday, where we will all be getting some much needed R&R!

We have been to B-ham twice since the last update, so I will quickly recap both:

• My Dad picked up Liz and me in Chatt and drove us down to give Liz a break from driving, which she throughly enjoyed. We received our MRI results back and the tumor remained stable and maybe even decreased in size! Yay! Finally some good news. After my MRI results, they gave me the minimum dose (1/3 of the optimal dose) of the oral pill (Epacadostat), since any dose less than that would essentially be doing nothing. I had about 1/3 as bad of a reaction, so they decided to take me off of the pill for good.

• This past Monday (6/11), Liz and I just drove down for the day for the infusion only. Praise the Lord there were no side effects from the Nivolumab, besides a mild headache! We will really see how the Nivolumab by itself is working when I get my next MRI the first week of September.

Now, I have to mention Liz for a second. I know I have said she has been my rock of stability through all of this, but what does that even mean? She continues to be an amazing Mom and wife through all of this. When I am not feeling well and have to lay down, she never hesitates to say “go lay down! I’ll take care of Jack”—not to mention she is having to deal with the anxious thoughts of me possibly passing away, which I maintain is harder than the position I am in. She never complains when I ask her to drive me somewhere and I take that for granted. It is obviously hard to rely on someone else for transportation, but you don’t think about the person having to drive me around town—and I am a terrible backseat driver! I am in constant awe of how she continues to handle a really bad situation. I love you Liz.

Which brings me to a little devotional:

Everyone is going through some sort of suffering in their life, whether it be an illness, a broken relationship, unexpectedly becoming a caregiver, money problems—it is all relative to that specific person, and they have a choice of how to deal with it.

My mom steered me towards a book written by Viktor Frankl, a holocaust survivor, called Man’s Search For Meaning, that discusses how we handle suffering. Suffering in and of itself is meaningless. We give our suffering meaning by the way we respond to it. 

Let me explain using a great example from Frankl’s book:

In Frankl’s book, he discusses his time in a concentration camp and how he made it out alive. Frankl describes a man who he is in Auschwitz with. This man is the essence of worldly success. He has a great job, multiple degrees, and respect from his peers. He is then taken by the Nazi’s to a concentration camp, where he is stripped of everything—his dignity, job, degrees, all that he has worked his entire life for. This man, whose self-esteem had been so wrapped up in worldly possessions, would go on to die. He would no longer be able to get back to the social class that he was in before he became a prisoner. In short he was humiliated. It was how he handled the suffering that killed him—not the lack of food or lack of medicine.

Frankl argues that we are never left with nothing as long as we retain the freedom to choose how we respond to adversity. In the example above, the man chose to respond by essentially rolling over and losing hope. He put all his weight and hope in how the world perceived him, and once that was gone, it killed him.

I love this quote:

“We have come to know man as he really is. After all, man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those gas chambers upright, with the Lord's Prayer or the Shema Yisrael on his lips.”

—Harold S. Kushner

So what does this mean?? If we put our hope in God and trust that He has a reason for our suffering, we will survive—maybe not on Earth, but where God has gone before us and prepared a room in heaven to spend eternity in. If we truly believe in eternal life, then why do we put so much stock in this life? Remove work or financial security from your life. Who are you now? 

It’s like a being young NBA prospect who has a great high-school career. Every one is his 'best friend'… until he doesn’t make the NBA. Unless he has a great relationship with God, his identity is going to be so wrapped up in being the next Michael Jordan that he fails to see the big picture. Everyone that was his ‘friend’ has now vanished. If he doesn't have that relationship with the Lord, he is going to fail to see there is a life away from this one—a life that is better. And if he could see how God is going to use his failure to make it to the NBA to mold him to be more like Him, he would want it to happen too.

To sum it all up, what Frankl is trying to say is, putting our hope in our eternal future is something no one can strip away from us. So, why are we so scared of death or failure? The way I see it, we are here on Earth for a brief period of time to love God, love others and make disciples—that is all we are called to do.

Thank you to all of those who continue to keep our family in your thoughts and prayers!

Much Love,

Nathan

Beautiful pic of the Goodspeed Trail to Mt. Hood Summit. This is on my running short list while I am here! Short little 6.6 mile out and back.

Pain and Suffering

Hey everyone!

Since you haven't heard from me in a while, I thought I'd update you on my current state of mind and condition.

First of all, my family and I are so grateful that God has given us this amazing platform to tell our story from—to be a tool on God's tool belt. We are blown away daily by all the encouraging texts, emails, Facebook messages, letters, gifts—you name it, and we've received it with gratitude in our hearts. We were humbled to be a small part of Rick Dunn's incredible sermon titled "Jesus the True and Better Isaac" at Fellowship Church in Knoxville this past Sunday. Thank you for continuing to keep our family lifted up in prayer, when it is past the point of being 'headline news'. I guess to sum it up, we are being used in ways we can't fathom here on Earth, and for that, God is to thank.

My strong wife and sweet mom summed up the past year better than I ever could. I cried as I read both of their updates. As I look back on the past year, sure there has been a lot of pain and struggle, but out of it has come growth. As my mom said to me the other day—she was quoting A Year In Burgandy,

"A vine has to suffer to make good grapes. You can't coddle it or it will become lazy, like a couch potato."

Our roots have grown deep to survive the drought, and it has shown in the harvest. Our family has reaped some fine wine out of all the pain and struggle we have had to endure in the past year, and I wouldn't change a single thing. My only hope is that God will continue to work through our family, as He has been doing.

The Update:

Due to some adverse side effects a few weeks ago, I was off of the oral pill I had been taking for the past few weeks and was on a low dose of steroids. They wanted me to wait to take the oral drug until I was back at UAB and under my team's supervision. That was last Wednesday (6/15).

A lot people have asked "haven't you been taking the daily, oral pill for the last several weeks and not had a reaction?".

The simple answer is yes. The long answer is this particular oral drug (Epacadostat) takes a while to work, because it is essentially changing the cellular structure of your body. So, when I was taking it early on, it was in the early phases of changing my cellular structure.

Then came Wednesday came along..

Last Wednesday—aka "the worst day of my life":

They gave me the oral pill at 9:00am, and I had the infusion of Nivolumab a couple hours later...

That's kinda when I stopped remembering. I seriously thought—no joke—my head was going to explode. My eyes were blood shot red from the pressure building up in my brain, and I couldn't see more than two inches in front of my face. They gave me a high does of steroids in attempt to relieve the pressure build up, but nothing worked. Eventually, they gave me pain medicine through an IV, which helped at the time. They debated on keeping me at the hospital, but I chose to go back to the hotel—big mistake. The pain medicine that made me feel better for long enough to say "I want to go back to the hotel", caused me to throw up every two hours on the dot throughout the night.

I couldn't stop the headache to save my life. If I took the pain medicine they prescribed me—even with an anti-nausea drug—I felt better for a second, and then I would throw it up. I finally ended up going to sleep around 3-4am, and we had to be back at the hospital at 7:30am. ughh. The worst part about it was they were going to make me take the oral drug again the next day.

Thank goodness for Dr. Saleh's grace when he decided to not have me take the pill. Luckily, I had a similar reaction, though not nearly as bad, when I took just the pill a few weeks ago without the Nivolumab infusion. So, we decided that it was the pill causing this insane reaction.

In Dr. Saleh's words, this is a good thing. It means the drug is doing its job—just a little too well.

Where do we go from here?

We are going down for our first MRI since I have been on this study, on June 29, to see if the drug is doing its job. If it is, then we will attempt the oral pill again, but at 1/3 the dose. If I have a reaction again, then they will take me off the oral pill for good, but still do the Nivolumab infusions every two weeks.

If the MRI shows signs of tumor progression—well, we will cross that bridge if/when we get to it.

———

Why do we have to go through pain and suffering—sleepless nights throwing up, your head feeling like it is going to explode, my poor wife helplessly witnessing this? Because good, beautiful things come out of it—even if it is not the healing we are all praying for.


Thank you for your continued prayers.

Love,

Nathan

My good friend, David Nichols, was driving through Birmingham and decided to pop up and see me!

6/4

Hey everyone,

It has been one year since Nathan had those 3 massive seizures at work, one year since Nathan has driven, one year since our lives have been "normal", and (last one) one year since we started to thank God for each day that we have gotten to spend together.

We tried to take a mini vacation to Blue Ridge, GA this weekend to celebrate his one year mark with some rest, relaxation and (per Nathan's request) fly fishing...and all was well... until Friday evening. Nathan sort of had a breakdown to me, because he was being super forgetful and was confused with specific tasks (such as: how/where to breakdown his fishing pole so Jack couldn't reach it, where certain plates are put up after they're clean, bringing his computer out then not remembering what he wanted to use it for, making decisions on what he wants to eat: grilled veggies vs broccoli casserole- was stressing him out). I think being out of his normal routine with his confusion/forgetfulness in a new environment scared him- which I completely understand. That being said, I suggested that we go out to eat that night (last night) so we didn't have to cook nor make decisions about what to cook and that we head back home today. He seemed to be relieved at the idea of coming back to his comfort zone, so we're heading back a day early. I still want to celebrate the one year mark since his diagnosis, so we're going out to dinner tonight night while my parents babysit Jack (thank you mom and dad!).

As I sit here in Blue Ridge, it's really hard for me to think back on that day. I vividly remember the call from my friend, Meredith, telling me about Nathan's seizures via her sister Greyson (an intern at the time at Bellhops), me speeding down the interstate to Bellhops and getting there just in time to see Nathan having his 3rd seizure on the stretcher, finally being able to see him after two hours of waiting- just to see Nathan lying unconscious in the ER with a breathing tube down his throat, and hearing the doctor give me the news, alone, in the hallway that Nathan had a large mass on his brain...then having to relay that news to his whole family. It's a day that I absolutely hate. Hate.

Then I start to think about how it's changed us. How it's changed our relationship with one another. How it's changed our relationship with God. It's made us incredibly positive. We literally (try) to live each day to the fullest, when possible. Yeah, we're still being realistic and know every single statistic about glioblastoma, but we've started to see the silver lining in things and don't get caught up in the small problems of life.  It doesn't matter who you are- when you are going through something as big and life-altering as this- you have to stay positive and continue to look up to God for strength and guidance. I distinctly remember my mother-in-law, Gretchen, telling me in the hospital, "God doesn't give you more than you can handle. He gives you MUCH more than you can handle, so you have to lean on Him for strength." Those words have stuck with me all year and they couldn't be more true. Before now, fortunately, I've never been through a "trial" in my life and never really had to look up to God for strength or patience or anything else. Everything has always (in most ways) "gone my way." June 4th, 2015, that way of life was thrown into the gutter. There's literally no other way we could nor would have made it through this year without God's strength and love. Through books, devotionals and counseling, I've learned to not ask God, "Why?" but instead, "For what purpose?" So, although I hate this day, I also have learned to love it because I believe it was the 1st day that God used (and continues to use) Nathan's life to impact so many others to glorify Him, and you can't argue with that.


Here are some pictures from Blue Ridge, GA from this weekend:

I'll leave you all with a devotion that I read from June 4, 2015:

Thank you to everyone who has been there every step of the way for us and kept up with our journey. We are forever grateful for your love and support. 

Much love and many thanks,
Elizabeth

One year. Fighting strong!

One year ago, I was in Evansville, Indiana on a work trip. Just after breakfast, Elizabeth called telling me Nathan had three seizures and was being transported to Erlanger Hospital. In a matter of days, our lives would forever be altered. It's hard to really explain all the shifts. Maybe we simply gained a perspective which can only be attained after being shaken from the complacent position where most of us spend a large chunk of our lives. You know the place. It's where we take things for granted, put off that trip until next year, or cut the vacation short because it's just hard to get that many days off work together. All of that changed the month June of 2015.

Nothing, I mean nothing is taken for granted anymore. Every holiday, every possible weekend to bask in time together has been wrestled for, and planned with much intention. It's funny how I'd never consider doing it any other way now. It just goes to show you how a diagnosis can turn a ship with the greatest of ease.

Last week, we had one of those glorious times. It's a week I always look forward to every year but this year was special. We made our way down to Carillion Beach just east of Rosemary Beach. Hannah, Cal and the pre-school drove down, as did Nathan, Elizabeth and Jackaroo. I flew down because car rides are long and Mussy is spoiled!

I won the lottery and got to be the one to take Nathan back to Birmingham for his scheduled infusion on Monday. We drove back on Sunday, spent the night, had the infusion and drove back on Monday. As I think about it, it's been years since I've had that kind of time with Nathan. What a gift!!

The thing is, Nathan is different. I mean, Nathan is really different. In some ways he's the same ol' Na Na. Elizabeth is different also. She has blossomed into a beautiful servant. Laying down every dream she had for herself and family to embark on a narrative she'd never write or want. They both amaze me. However, after having two wonderful days to myself with Na Na alone, I saw him in a new light.

We set out on Sunday for the four plus hour drive back to UAB. We talked about everything you could possible imagine. Some of it was inconsequential. We solved most of the worlds problems!! Then there were some painful discussions. We talked of plans, plans no mom would ever want to consider. We listened to Pat Metheny, Nickel Creek, Coldplay and some various rap (he's always liked it, it's not my thing but I tolerated it)!

There was also the Waffle House in Montgomery (because Nathan loves Waffle House)! It was an awkward time of day for dinner (3:30), but when you are on the Na Na schedule you eat at odd times. We were the only ones in the restaurant, shocker. We cleaned our plates and I went to the bathroom so we could get on the road. When I came out, Nathan was paying for our early bird dinner. The sweet lady working was telling him she couldn't make change for his large bill. I told him I had money but he told me no, he said, "If you will give me a water to go, we'll be square. Just keep the change." That waitress was astounded. She honestly didn't know what to say. We got in the car and she was grinning from ear to ear. You could see her telling the cook what had just happened. We drove away and I thought wow, my boy, loving folks like Jesus. (He's probably going to kill me for telling this story!)

I say all that to say this. Nathan is different because Nathan has become more and more like Jesus. I made a list of characteristics I see growing in him and they all are things we can't produce. In the midst of an uncertain future he has an immovable peace. Spend just a few minutes with him and you'll see it. He doesn't sweat the small stuff. He's very present to the situation he's in. You won't find him selfishly doing his own thing, unless he's not feeling well. Generosity has grown exponentially. How he treats each and every person he comes in contact with shows how much he respects them, whoever they are. I love to see how teachable he is too. I can suggest something I've read or heard and he's interested enough to listen or read it himself. He's living authentically, speaking truth and hitting things head on. Nathan's heart has become soft, his essence is light. When he talks, I want to hear what he has to say because it's weighty and wise. I can see he not only knows about God, he knows him. Plus, he trusts him. It's the ONLY way he can exude such a peace.

I've prayed for Nathan even before he was my child. His name means, a gift from God. He is just that. This year has undoubtably been the most formidable year of his life. It's like most things in God's kingdom. What looks like death is life. What seems like a situation that would bring despair is instead a compass directing us to a life that's full and free. Abundent life is now oozing out of him. For the first time ever, he's in tandem for that which he was made. For all of us, he's showing the way. He's pointing each and every one of us to live in a way that's different. Primarily, to love one another deeply. Supernaturally, Nathan is being transformed into the very likenes of Christ. As Tim Keller says, we are living in an upside down kingdom, the way up is the way down. The way to greatness is by way of lowliness. To save your life~ you loss it. Matthew 10:39 Whoever finds his life will lose it, and whoever loses his life for my sake will find it. We can't muster this stuff up. We can't make a grape vine produce grapes. A seed has to die before life breaks forth.  My amazing son is breaking forth. He laid down his very life and by doing so, he found it.  I think Philipians 3:20.21 says it best. But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, Who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.

We are having the privilege of seeing this transformation here and now. What a testimony he is to the saving love of Jesus. Praise God from where all blessings flow.

In Him,
Gretchen

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