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