Thursday, March 30, 2017

Midline Shift Update

Hello! I wrote this email to family and friends about a week ago -- but wanted to keep everyone updated on what's going on with Nathan...

We came down to UAB yesterday (3/22) for his regular infusion. On the way down, Nathan was complaining about tremors in his hands and face. He couldn't smile or close his eyes without his face trembling, but he felt normal-- other than that. When we got to UAB yesterday, Nathan told Dr. Saleh (clinical trial doctor) about these symptoms. He was a little concerned, so he suggested we have an MRI done today to see if there was fluid buildup causing these tremors and partial seizures (he had two episodes while we were in France). Nathan had the MRI at 8am this morning.

So, the results showed MAJOR fluid buildup in his tumor cavity. There was so much that it was causing a midline shift. A midline shift is the shift of the brain past its center line. The fluid was pressing into his right hemisphere of his brain, causing all of these issues from the pressure. Here's a picture of his most recent MRI (taken today -March 23rd). You can see his tumor cavity (filled with fluid) and how it's creating that midline shift. I posted a picture of what a normal brain's midline is supposed to look like vs. Nathan's brain:

        






So, you can see how big his tumor cavity is and how much the fluid is pushing the cavity over to the other side of his brain. To fix this problem, they drained his Ommaya reservoir. They stuck a needled into the mushroom shaped reservoir in his brain, and sucked 20 cc of fluid out. Nathan didn't seem phased at all. I, on the other hand, almost passed out. Seeing that is not for the faint-hearted....

Here's a picture of what 20 CCs of fluid looks like...I put a pen next to the tube for reference. Sorry if this is TMI!




For another point of reference, they removed 60cc (3X of what's in the picture) of fluid from his cavity during his surgery in January. They only removed 20cc this time, because they were worried about taking too much out at one time and having him suffer from side effects from his brain returning to its normal state, as it decompresses. They weren't worried as much during his surgery when they removed so much because he was under anesthesia, surrounded by a team of doctors, and would be in recovery for a few days. So, they suggested that we come back each week (for two more weeks) and they'll removed 20cc next week and 20cc the following week to completely drain it little by little. 



​As for the results of the MRI...mostly fluid (obviously). The radiologist said that a nodular area on his regrowth looked worse, but our Neuro Surgeon (Dr. Riley) and our Neuro Oncologist (Dr. Nabors) didn't necessarily agree with the radiologist. They believe that all of this fluid is creating pressure on that nodular area and causing it to look worse than it is. So, Dr. Nabors wants to drain all of this fluid and have another MRI to get a better baseline, and we'll do that in about 3 weeks and see what's really gong on in that area. Dr. Nabors also wants to hold off on his infusions until they get a better idea of what's going on, too. Dr. Riley was a little concerned about Nathan's running (thinking that the blood in the fluid was coming from hemorrhages from running)...but neither doctor believes that it's bad enough to take running away from Nathan. They gave him a green light for the Boston marathon!

So, that's where we are at the moment... I hope all of this makes sense! 

Thanks for keeping up!

Love you all,
Elizabeth


Update as of 3/30:

-We went to UAB yesterday for the day so Dr. Saleh could drain 20cc of fluid from his reservoir. Everything went well! We were in Birmingham for less than 2 hours - so it was just a quick trip. We'll go back next Wednesday so they can drain the last bit of fluid, and hopefully Nathan will feel much better once his brain decompresses back to a "normal" state. He will have the MRI the week after he gets the last 20cc of fluid drained. 

Saturday, March 18, 2017

The Chattanooga Marathon and Paris

Hey everyone!

It's Nathan. A lot has happened since we last wrote. All good stuff, though! First of all, let's discuss the Chattanooga Marathon debut...

The Chattanooga Marathon

We were feeling great after mile 20. I was feeling a little rough, but I was going at a pace where I could qualify for Boston—by we, I mean Alan Outlaw (owner of Fast Break Athletics) and I, who I can't say enough good things about. A guy that can run a 2:40:00 marathon knowing when to push and when not to is a great man in my book. Alan also helped coach me through the process, which was difficult given my stubborn attitude towards more workouts and less slow, easy runs. "You have to build that fitness base, and you build that by running slow" (another term for this is called MAF method) is what he would say to me when I insisted on doing another workout. Slowly though, he chipped away at me until I was teaching others about the MAF method.

Anyway, back to the marathon... I was feeling a little rough through 20 miles when I felt it coming: I was about to have a partial seizure. David Cobb wrote about it at the tail end of this article after the marathon, but luckily, Alan knew just what to do. I told him I wouldn't tell anyone this, but he handed  me one of the meds I take when I have a seizure. I couldn't talk for a while, and my head was twitching to the right for about a minute -- but we ran through it, though we couldn't regain the sub-7 minute pace we were accustomed to. We finished in 3:07:09. Had we not had the seizure episode, it would have been a Boston Qualifying Time (which is 3:05:00 for my age group). At the time, I was really upset. If I just hadn't had that seizure!

I expressed my frustrations with my dad and long story short he got me a spot...in this year's, which is in a month!!! So, I am preparing myself to enjoy the prestigious Boston Marathon! If I had qualified, I wouldn't have been able to go until next April. God always comes through the back door (as my mom would say) and boy did He ever.

God also blessed me with a more incredible gift. As I was frustrated walking back to the car, this little boy came up to me and told me I was his hero and that he wrote a paper about me in school. This almost brought me to tears. Why was I so involved in this trying to run a 2:5X:00, when I was already a hero to this kid? Are my priorities that mixed up... AGAIN? This brought me back to reality where I realized that winning isn't everything. You have people that you don't even know watching the way you live your life, so live it like "Christ is formed in you."

The kid who brought me back to reality!

Here are some more pics from the marathon!



Alan and me before the start

Jack and Liz at the finish line!

I thought this was a cool pic.

#greymatters

Paris

The day after the marathon, we dropped Jack off for 11 days with Elizabeth's sweet parents (Meepsie and B, as he calls them), and we set off for Birmingham for another infusion. I honestly don't know what we'd do without her parents. They have been such a gigantic help to us. They take care of Jack every two weeks while we're at UAB and give us a peace of mind knowing that Jack is in the best of care. THANK YOU, Beth and Buddy, from the bottom of my heart for all that you do for Jack.

  From Birmingham, we set off for Paris!! Let me take a step back and tell you that Katie (Elizabeth's sister) dreamt big when her company, Beautycounter, asked for wishes to be granted. She wrote in that her sister had taken French her whole life (even minored in it in college), and her husband had terminal brain cancer. She asked them to give us a trip to Paris. Well, Christmas of 2015, they granted it! Last year and a week before the trip, I had a grand mal seizure which ruined any chance of an all expenses paid trip. Beautycounter said they would reschedule it any time, and a year later, on our five year anniversary, we finally made it!

Us on our five year anniversary!

My sister and Cal, in a crazy coincidence, were in Paris for a few days when we were there! You can read her blog here. If you read her blog, we all had a blast!

A lot of people asked me what my favorite part of the trip and as I have had time to think about it, it was watching Liz live out her dream. She was so excited about everything! She kept saying, "I feel like I'm in a dream, and I am going to wake up and the Eiffel Tower is going to go away!"She loved the cafe's, shopping in the Marais, the Eiffel Tower, just everything! It was like I was living vicariously through her. Though I had a couple episodes, everything was AMAZING! I felt like I was always hungry. I went off my diet, because you just can't go to Paris and not eat the bread. Needless to say, I gained ten pounds!

Thank you Katie and Beautycounter for letting Elizabeth life out her dream. I was just there to tag along ;) We seriously can't thank you enough.

Here are some more pics from our trip to Paris!
Liz, Hannah, and Cal take a selfie in front of the Louvre 

Liz and I with Hannah and Cal



Liz & me at Versailles

Liz made me try Escargot...and I ordered them for every meal after this

At the Musee de L'Orangerie infront of the Monet paintings

Musee D'Orsay

Arc de Triomphe








Thank you all for the continued prayers and for getting us to Paris and back!


Much Love,

Nathan









Wednesday, January 25, 2017

Update On Nate

Hey everyone,

I know it’s been a while since we’ve updated the blog. From Christmas with the stomach bug to finding out that we have to replace our field lines in our backyard, we've had a stressful and busy two months...to say the least. I’ll back up and update you all...

I think Nathan updated the blog about our trip out to San Fransisco in early December. We went out there for Nathan to run in a 50 mile (!!!) trail race through Muir Woods. Around mile 19, Nathan had two partial seizures and had to drop out of the race. When we came back to UAB for his usual infusion that he has every two weeks, his doctors wanted him to have an MRI to see what was causing these partial seizures. The results of the MRI showed major fluid buildup in his tumor cavity which was creating pressure on his brain, causing these partial seizures, headaches, and weakness on the right side of his body. They told us that he needed to have this drained in order to feel better. They also told him that the surgeon would insert an Ommaya Reservoir, so they could drain the fluid in the future without Nathan having to go through another brain surgery. So, we scheduled the procedure after the holidays on January 6th. Everything went well, and-- in true Nathan fashion-- he walked out of the hospital the next day. 


Nathan and me in his holding room before surgery
Lucky #13 (his favorite number, since that's his birthdate)

While Nathan was in the operating room, the surgeon went ahead and took a biopsy of some tumor tissue, in hopes of seeing t-cells in the tissue to show that this clinical trial is really working. We have been waiting on the pathology report, and I'll explain that in a little bit. 

So, since then, the weakness on the right side of his body has subsided. However, he has had these strange new episodes over the last few weeks. 

The first one happened on Jan. 12th...

Nathan, Jack, and I were all at home, and Nathan went to the kitchen to get some yogurt. He became confused on the "process" of getting the yogurt (where are the spoons, how do I open the yogurt, is it in the fridge or is it in the cabinet?, etc...). This frightened him, so he gave up on the yogurt and went back to our bedroom to rest. He called out to me and said that he was really confused. Before he could explain what he was confused about, he said that he was losing feeling in his right arm and I noticed the right side of his face was drooping. Then, he quickly lost his ability to speak. Meanwhile, I was freaking out. I googled (I know, I know...) these symptoms and thought that he was having a TIA, or mini stroke. Thankfully, this episode only lasted a few minutes and he was back to "normal"... speaking, using the right side of his body, etc... I called our clinical trial director, Traci, and she advised us to call the on-call Neurologist at UAB. I spoke with him, and he said that the likelihood of a stroke was very slim and that he probably had a seizure. He told me that if this happens again, go to the ER. In my head, I was thinking, "Umm..this did not look like one of his normal seizures. I'm pretty sure he had a mini stroke, according to Web MD." You know, because I know more than a Neurosurgeon... 

Anyway....two days later, he had another one...starting off with confusion, then weakness, then losing his ability to speak. Nathan handed his phone to me, and I called an ambulance. The hardest part of all of this, for me, is trying to shield Jack from seeing his dad in a weakened or scary state. This time, luckily, it didn't seem to phase him-- as he was very excited to see an ambulance and a firetruck in front of our house -- saying, "Wow-wee!", when they pulled up. Since my parents were out of town for my sister's gender reveal party, my Uncle Jamie came straight over to pick up Jack. It's so nice to have a lot of family so close! That definitely took the weight off my shoulders of trying to deal with a wild three year old in the ER waiting room.  By the time I was able to see Nathan in the ER, he was completely back to normal. In fact, he said he started to feel normal again in the ambulance on his ride to the hospital. The ER doctor ordered a CT scan for Nathan, and he confirmed that these episodes are NOT mini strokes but are complex partial seizures. Thank goodness! He said that they can look very similar to a mini stroke and that he had treated patients for a stroke, when they actually had a complex partial seizure instead. That made me feel a little bit better about my Web MD diagnosis for Nathan and that I was not a complete idiot... hah. I had no clue that there are so many types of seizures. Not all of them are the twitching/tongue-chewing ones that you commonly think of. 

Since then, he's had one more complex partial seizure. I think by knowing exactly what was happening (that he wasn't having a mini stroke) took some fear out of it for Nathan. He now knows that the scary symptoms will only last for a few minutes. He seems to recover/bounce back much faster than he does with the grand mal seizures. 

So, today, we are back at UAB for his regular infusion. We have gotten the pathology results back from his biopsy (to see if t-cells were in the tissue) and results back from testing the fluid that was in his tumor cavity. 

Thankfully, the fluid in his tumor cavity was benign. They were 99.9% sure it would be benign, so we weren't too stressed about these results. However, it is nice to have the confirmation that his fluid wasn't malignant. 

As for the pathology report from the biopsy, we obviously know that he has grade IV GBM. However, the sample that the surgeon took out wasn't large enough to show if there were T-cells in the tissue. If the surgeon had taken out a bigger "chunk" of tissue, it would have definitely affected his speech-- so it was better to play it safe. All of Nathan's doctors feel confident that the trial is working, since (one) he hasn't had any regrowth since he started this trial, (two) since a portion of his tumor regrowth looks a tad bit smaller since he started the trial, and (three) because he has been on this trial longer than any other patient at UAB with GBM. So, long story short, he's doing very well - aside from these episodes he's been having. 

He has (of course) started to run again- working his way back up. Since he left the hospital, it's been a constant challenge for me to try to MAKE him rest so he can recover from a BRAIN surgery - but he will have none of it. He has also been slowly easing back into work.

Throughout these past two months, we've seen God show up through so many people in so many ways. From everyone reaching out to help us with Jack, meals, running partners for Nathan, to the texts, calls and emails of encouragement to us. We greatly appreciate everything. Speaking of, I'll leave you all with a excerpt from a devotion that one of my close friends sent me the day of Nathan's surgery....


"I am able to do far beyond all that you ask or imagine. Come to Me with positive expectations, knowing that there is no limit to what I can accomplish...Do not be discouraged by the fact that many of your prayers are yet unanswered.

Time is a trainer, teaching you to wait upon Me, to trust Me in the dark. The more extreme your circumstances, the more likely you are to see My Power and Glory at work in your situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. 

Keep your eyes and your mind wide open to all that I am doing in your life."


Thank you SO much.

Love,
Elizabeth

Wednesday, December 28, 2016

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

Monday, December 5, 2016

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 

Saturday, October 15, 2016

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

Thursday, October 13, 2016

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