Week 2 of Treatments

Dear Friends,

It has been a while since we shared an update about Nathan. Part of the reason is that I want to be respectful not to fill up your inbox; the other reason is that there has not been too much to tell.

Nathan is concluding his second week of treatments. He receives chemotherapy 7 days a week and gets radiation M-F, both done in Chattanooga where he lives. Although he felt pretty well the first week of treatment, this second week has been tougher. For example, he tried to get through a day without his anti-nausea medicine and soon got sick that morning. So, now he always takes it. He is also feeling very, very tired. For someone who is normally the Energizer Bunny, he has been forced to slow waaay down. He has attempted to go into work most days but how long he can stay at his job is dependent upon his rapidly depleting fuel tank. However, Bellhops (his employer) has been simply amazing with their understanding, support and care for him. We would be remiss not to acknowledging true blessings like this.

In four more weeks, after six weeks of treatments, Nathan gets a month off before they begin again. So, we intend to go somewhere fun and enjoy that time off. He is definitely looking forward to some relief from all this and I am sure Elizabeth, who has to drive him everywhere (no one is allowed to drive for 6 months after having a seizure), will look forward to not having to chauffeur Miss Daisy around town each day.  

For you and for us, the initial terrible shock of the diagnosis has dissipated to some degree but the grind of walking through this has certainly begun. Even though this may not be front page news any longer, we do ask for your continued prayers.

On a personal note, I preached at ChristChurch in Dalton Sunday. Nathan, Elizabeth and Jack were able to come. What a joy it was for me to see them in the congregation and enjoy a meal together afterward! The Lord has had me in John 6 where Jesus was no longer doing what the people wanted. Although the crowds were following Jesus, when Jesus refused to grant their requests and even insisted that He be what ultimately sustained them, everyone left but the few disciples. Sadly, sometimes we really want the Loaves more than we want the Lord.

During this time when some of our requests have not been answered in the way we had initially had hoped, we are being reminded to seek the Savior, not just the Supper. Some of the truest words I have read in a while are these: “Lord, to whom else shall we go? You have the Words of eternal life.” Sunday, although many folks were there, it felt like I was speaking that truth to my son… and especially to myself.

Thank you again for your faithful prayers and many expressions of love for Nathan and his family!

Buddy

Week 1: Radiation/Chemo Report!

Mussy reporting today!

Nathan, Elizabeth, and Jack came up to Knoxville last weekend, since he was feeling so much better. Hannah wanted to have a photo shoot before Tron starts having some spotty hair loss from the radiation. The Radiologist office called bumping up the start of treatment to this past Tuesday. He and Liz had been previously told it would take a week to ten days to get the mask made but apparently because Tron was in the house, things happened quickly. Tuesday morning, they set the early morning alarm to take the chemo pill, anti-nausea pill, (spaced out just so), and then make their way down the mountain to Erlanger.

Day one was uneventful, with little to report. His only complaint was feeling a little foggy. Day two, he went to work afterwards. I was really glad he did because we all know that Tron loves his job!! Day three, he had a strange bout of losing his train of thought however, day four, it seemed to go away. Oh yeah, how could I forget, he ran two miles one of those days!! He's a freaking beast!! Then yesterday, he decided to leave off the nausea pill because he wasn't sure it was necessary. The Oncologist said sometimes folks don't need it. Welp, on the way down the mountain, his breakfast ended up in Yeti's leftover dog food bag. The experiment of leaving it out is over and never, ever will he not partake!.......Lesson learned! Speaking from the mom camp, Nathan was my throw-up kid. He was notorious for over-indulging and without warning, letting it rip wherever he was, with or without a trash can. I'm just glad they were quick enough to grab sweet Yeti's bag or the Subaru Forester would have been marked for life, just like the carpet was beside Nathan's twin bed.

After he took his pill, things settled down. He came home, crashing for a much needed nap. Yesterday afternoon, he called me and I was thrilled. He sounded amazing. I know all this stuff is not just physically hard, there's the mental anguish also. Overall, he's done fantastic this week. I'm not sure if we can officially say one week is down because he didn't go on Monday, but he has the weekend off from the Radiation. The chemo continues every day for five more weeks. We will try to at least give a weekly report.

I'm so very proud of him. I know that probably goes without saying. If you don't know Nate very well,  you probably don't know what a rock star he is. You probably don't know how he started his own golf ball selling business in Gettysvue when he was just a tot. He always was looking for a way to make money.  (One year for Halloween, he dressed up as a millionaire. Hilarious! He had fake money coming out of all his pockets and wore a suit!!) That's my boy. Ha! All of that drive and determination is in full swing right now. It's just being funneled in a different direction. But it's defiantly there, determined to do everything in his power to beat this thing.

What a privilege it is to see how God is showing up too!! He's EVERYWHERE!! Day after day we are honored to run into folks telling us they are praying, or how this has impacted their lives. Who would ever want such a horrendous thing to enter into their world? We sure haven't. But here we are. Day after day, our family wakes up thinking about all the many facets of this. We are family, we are community. Because of that, we are ALL impacted daily. The interconnection will hopefully bring us all strength, as well as closer to each other and to the One who is calling the shots.

In my own life,  I have struggled and questioned God. What I have come away with after many tears through the years, is that God is more loving than I have ever been able to grasp. His ways are different than ours. Way different. The question I have to always ask myself is, do I trust Him? Do I trust Him when I can't see the next step? The truth is, what do I truly know about the next step anyhow? When faced with something as insurmountable as a grade 4 brain tumor, the reality is, we are at His mercy. No amount of determination can force His hand. Na Na's response has been to leaning in. I see it, as do others.  He's stepping into the dark abyss. He's laying down his worry. He's realizing to not take life for granted. His priorities have shifted. This life and how he lives it will never, ever be the same. What am I most proud of? Nathan is pointing others in the way to walk, just like Paul did. With each post he's saying.......go......go this way. It's the way to life.  [Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.] In this verse, Paul is pointing us to the future. He is telling us God uses our sufferings to produce a future glory. We are going to be more like Jesus. He wants us to endure, engage and bless. That's what I see in my boy.........He's a child of the King! In this beautiful, horrible mess i see Jesus. I see Jesus manifested in my son. For this, I praise God!

Romans 8:24,25 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.

Don't Worry

Hey everyone!

I wanted to share July 15th's devotional from Jesus Calling with you all because it was so relevant to me and hopefully you all:

July 15

Do not worry about tomorrow! This is not a suggestion, but a command. I divided time into days and nights, so that you would have manageable portions of life to handle. My grace is sufficient for you, but its sufficiency is for only one day at a time. When you worry about the future, you heap day upon day of troubles onto your flimsy frame. You stagger under this heavy load, which I never intended you to carry.

Throw off this oppressive burden with one quick thrust of trust. Anxious thoughts meander about and crisscross in your brain, but trusting Me brings you directly into My Presence. As you thus affirm your faith, shackles of worry fall off instantly. Enjoy My Presence continually by trusting Me at all times.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

—Matthew 6:34

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

—2 Corinthians 12:9

Trust in Him at all times, you people; pour out your heart before Him; God is a refuge for us.

—Psalm 62:8 nkjv

Wow. This was the perfect message at the perfect time, and it is so true. You have no control (whether you think you do or not) over the future or what is to come. Take me as an example. I thought I was invincible, and it turns out I am not. You just don't know what the future holds, so there is no use in worrying about it. Take it one day at a time, and thank God for giving you another day, because you never know what is around the corner.

I know 'take it one day at a time' is very cliche phrase, but it is so true, and now I understand why. 'Live each day to the fullest' is another cliche statement, but again it is sooo true. When something like this happens to you, it is truly eye opening to what is important in life. I know I hit on that topic in my last post, but if anyone learns anything from this whole experience I want it to be to not take anything for granted! I played golf yesterday and got pretty emotional because I didn't know if I would ever be able to play golf again (I use 'play' as a loose term. I shanked the ball all over the place..).

Going from thinking I was invincible to the situation I am in, even though it has been really hard, has been an amazing thing for my faith and family. God has shown up in more ways than one, and it has really helped me figure out what is important and what is not. Thank you all for the continued prayers and support for me and my family. It is truly appreciated and needed.

Much Love,

Nate

Some Good News

It has been a little while since we have posted an update. That is mainly because there have not really been any headlines to share. But, we do have a few to offer:

Nathan has continued to heal from the surgery and seems to be feeling more like his old self with each passing day. He has also re-tooled his eating habits. He has always been fairly health-conscientious but he has taken that up a notch and has basically cut out processed foods, sugars and artificial sweeteners. He has combined this new healthy diet with some exercise and even ran 3 miles yesterday. To his credit, he is doing everything he can to be as strong as possible and give his body every chance to fight the good fight before him. Being at home, sleeping in his own bed, playing with his son Jack and even going into work for some brief visits have all helped him feel better and a bit more “normal” again. So, the last two weeks have been good weeks for Nathan.

Tomorrow morning, he meets with Dr. Kimsey, the radiologist oncologist at Erlanger Hospital in Chattanooga. This will just be a consultation. The good news is that Nathan does not have to go back to Vanderbilt for his treatments; he can receive them Chattanooga, which will make things much easier to manage for them. Remember, Nathan is not allowed to drive for 6 months since he had a seizure. So, treatments in Chattanooga makes life much easier for the both and a lot less driving for Elizabeth. Within the next few days, Nathan will begin his treatment protocol of chemotherapy 7 days/week and radiation 5 days/week. He will do that for a month and then he gets a break before it starts back again.

Today, we all got some good news from Dr. Moots, the neuro oncologist at Vanderbilt. Vanderbilt’s Pathology Department had conducted a molecular testing of the tumor tissue. Dr. Moots wrote us with the results: “There is an IDH-1 gene mutation. This is common in ‘secondary’ glioblastomas and predicts a better response and better control than tumors without this feature… the molecular results are encouraging.” So, this pathology report simply means that Nathan’s glioblastoma will respond better to treatment that other forms of this tumor. For that, we say, “Thank you LORD!” We needed some good news!

Let me conclude this by saying THANK YOU! So, so many people have done so many loving, generous and godly acts of kindness. It is simply so, so humbling. Frankly, it has been a lesson to me on how to love someone in difficult times. On behalf of Nathan, Elizabeth, Jack and the entire family, we could not be more grateful for your prayers, donations, and a host of amazingly creative and sacrificially practical acts that have made a tough patch of life easier for a faithful, yet still anxious young family. God Bless You! 

Buddy

Trust

Hey everybody!

So far, today has been my best day yet! I am starting to feel like my old self again.

During this last month, time has felt like it stood still. It seems like yesterday I was back in my office, without a clue that my life would be changed forever. Life has a way of automatically reprioritizing what is important to you when something like this happens. My good friend and co-worker, Clay Ingram, made a great point by asking the question, "How do we go about living our lives with our priorities straight without something terrible like this happening?" I have thought a lot about that, but in the end it just takes putting God in the center of everything. He will reprioritize what is important and also teach you some lessons, like trusting others...

I always thought I was a trusting person until I HAD to trust people to do things for me. I am not sure if it was a pride/control thing or what, but when it came down to it, I was not ok with concept of trust. For example, my first night out of the hospital I questioned every pill my wife, Elizabeth, gave me. "Are you sure I am supposed to take four of these? How many times a day? Are you sure?" I was convinced she was wrong about the dosage/how many times a day to take them, but of course, she wasn't. I have really learned to trust others and not rely on my own assessment of things. I think this lesson will help me at work as well.

Let me just say Elizabeth has been my rock. Not only is she dealing with this in a different way, but she has also been tossed into a role where she is paying the bills, taking notes at doc. appointments, keeping track of when I need to take my meds, driving me around (TN has a law where you can't drive unless you are seizure free for 6 months... 5 months to go) and much, much more. She has been so strong through all of this, and I really don't know where I would be without her. I love you, Liz!

Liz's notebook FILLED with Doc. Appointment notes

Going forward, I am going to try and get back to work a few half days a week to slowly return to a normal routine, which I am excited about. It will be fun to be back at work. I have really missed it.

Through all of this, God keeps teaching me lessons: how to trust, how to receive, and what it means to love. I am looking forward to what He will teach me next.

I truly can't begin to thank you all for everything you have done. From the bracelets, to the T-shirts, to donating, to just reading this blog, each and every one of you has made a positive impact on our family's life, and we can't thank you enough for the grace and mercy you have shown us.

Love,
Nate

The Return Of Tron!!

It's me, Mom/Mussy/Big Mom. The long awaited day finally came. The return of Tron to Bellhops! I woke up this morning to the zinging sound of the Nutra Bullet. Yes, the new regimen is in full swing. Thanks to Billy and Mary Blount's sweet gift, Nathan was up and at 'um making his morning concoction to start the day off right. A concerted effort to shift his diet and think about nutrition is well under way. I suppose it's the end of Red Bull, Gatorade, and the like. Hello kale chips, almond milk and chia seeds. This is training folks and we, #teamnatedog are not kidding. Are you in?

Bearden High school Tron throw back!!

We arrived at Bellhops around 10:00, as planned. Apparently, everything had been staged by Cameron and the gang before we walked in. It looked casual, nothing out of the ordinary but this is how sweet they are. They didn't want to overwhelm him with the normal shenanigans Bellhops staff are known for.  Such as, clapping monkeys, beer pong antics, or indoor parades. Instead, the atmosphere was cool, calm, and all chill. Tron is in the house, folks!!!

The time with friends and co-workers was amazing. The love from everyone is truly overwhelming. Elizabeth and I toured the new digs with Hannon, (who decorated this amazing facility) had a cup of very strong coffee, (I still have a small buzz hanging on) and marveled at the huge operation. This place is something else. No wonder Nathan loves his job. It all makes perfect sense when you spend a morning with his team. 

While were were there, Nathan wanted me to tell the recent miraculous story that happened a couple days ago. It's not my story; it's Buddy Fogo's, Elizabeth's dads. This one is unreal, so grab a seat, possibly a tissue cause it will knock your socks off. Here we go:

Buddy Fogo set up a business meeting a couple of weeks ago with a client to meet at Starbucks. For some reason, instead of Starbucks the venue was shifted to McDonalds. The meeting was Friday, July 3rd. Buddy was running late and almost cancelled but eventually made it. He'd been there about thirty minutes when a lady came over to his table and interrupted him. She said God had lead her to come over to talk to him. She stated she had been hesitant to do so, but the nudging was too much to ignore. She said she knew he had been going through a hard time with his family.  The message God wanted her to convey to Buddy was, "Everything's going to be alright." (Can you believe this???)

Buddy started to cry. He'd never seen this woman before.  He told her about Nathan, explaining all that's transpired in the past month. She said she didn't know why she had been lead to McDonalds, but now it all made sense. After many tears were shed, she laid her hands on Buddy's head and prayed. Her only instructions were for him to come home, lay his hands on Nathan's head and pray as she had with him. Buddy did just that. As soon as we got home from Nashville, Buddy, Beth, and Jack came over. He shared what had happened. He laid his hand on Nathan's scarred head and prayed. We shed more tears. God showed up. God blessed us using a total stranger to rely a message because he wanted us to know that, "Everything's going to be alright." Granted, we don't know exactly just how but I, for one,  rest in the assurance of whatever that means. We are simply blown away with his love and mercy day after day. 

After sharing the story with the Bellhops gang we decided to eat lunch and one of their favorite spots in Chatty, Public House. It's been so good to get out and have a normal kind of day.

After a stop at Whole Foods, ($100 dollars later) to obtain all the crazy stuff he's trying to eat now, we made it home. I thought he'd be ready for a nap, I sure was. Nope, he went for a run. DID YOU HEAR ME? He decided he'd give it a shot. He ran 1.3 miles. I'm simply amazed. Afterwards, he said he was really sore but it felt good. I'm praying he will continue to press on toward the goal set before him. God has lot's for him to be about.

                                                                 
                                                                     Hebrews 12:1-2

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Fight Like Nate

So here's what's been going on since we we found out that Nathan was diagnosed with a Grade 4 Glioblastoma brain tumor: Because his tumor is very aggressive, they want to start treatment (chemo and radiation) as soon as possible. However, we still have to wait a few weeks so his body can fully recover from his brain surgery. So, for the past two days, we've been in Nashville meeting with a Neuro Oncologist (Dr. Moots) to talk about Chemo treatment and a Radiation Oncologist (Dr. Cmelak) to talk about Radiation treatment. It's definitely been an exhausting two days going from appointment to appointment to appointment, and so on...

Here's an extremely summarized version of our appointments:

Wednesday-

We had a great meeting with Dr. Moots. He is the doctor who is in charge of Nathan's chemo treatment. Basically, Nathan will be on Temodar. He'll take this pill during his radiation treatment and continue it after radiation. I'll explain more about this in a bit.

Thursday-

We met with Dr. Cmelak and Dr. Cameron to talk about Radiation treatment. Basically, they're advising Nathan to have 6 weeks of Radiation treatment (which he can possibly do in Chattanooga - yay!). He'll have to go every single day (5 days a week). Apparently, the actual radiation session only takes about 15-20 minutes to do. So, first, they'll create a mold of Nathan's face that looks like this:

During radiation treatment, they obviously want to keep his head in the exact same spot each time-- so this mask will help to ensure that.

So, for the visual learners like me, here's a vague schedule of what Nathan will be going through for the next little while:

1.  Six weeks of radiation and chemo

       -Radiation treatment is 5 days a week (Mon-Fri)

       -Chemo Temodar pill every single day for 6 weeks (7 days a week)

2. 1 month off to recover & a MRI scan to check on things

3. After the month of recovery, Nathan will go back on Temodar - but will take it a little differently than before...

       -Once a month, for 5 consecutive days in a row, Nathan will take Temodar, and his dosage will be doubled. He'll only have to take it for those 5 days, and then he will give his body a break until the next round. He'll continue this cycle for (more than likely) 12 months. He'll also have MRI scans every 2-3 months to make sure there's not any regrowth. During this time, he should be feeling a bit better and go back to everyday life.

-IF there is any regrowth, that's when we'll start looking into clinical trials around the country. As of right now, because Nathan's tumor has been removed, he isn't a candidate for clinical trials. It's only if his tumor comes back. Dr. Thompson did an amazing job removing 95% of his tumor. There are only microcells left, and hopefully chemo and radiation will take care of them. We've definitely been doing our homework with all of the clinical trials out there. They're fascinating!

So, we've caught wind of the AMAZING bracelets that have been made for Nathan. We are so excited about them, and we genuinely want to thank Blair Webber, Paul Dickenson, and everyone at Bellhops that made this happen. 

For all of you Knoxvillians, you can grab one at Obligato, Elle, Neighborhood Barre, and TN FLY CO (which will be available online, for anyone else interested). These will all be available on Monday. Thank you in advance for your support. We hope that these bracelets will be a simple reminder to not only Fight Like Nate-- but to live life to the fullest, too. We love you all and greatly appreciate your support in joining us in this fight. 

We are returning to Chattanooga tomorrow, after being away from our home for an entire month. We've been staying at Nathan's dad and step mom's house - which has been wonderful. Seriously, we've been calling it Resort de Sexton. Debbie, Gretchen, and Buddy have been catering to our every need, and we can't thank them enough. It's truly been a blessing. Nathan and I have kind of gone back in time and reverted to "teenager mode". We eat all of their food, we sleep in, they've been doing some of our laundry, and when we leave messes, they let us leave it and clean up after us. So, it's going to a bit of a shock coming back into real life and making us "adult" now. So, THANK YOU Debbie, Gretchen, and Buddy for being wonderful parents to us and literally taking so much weight off of our shoulders.  We love you!

So, since we've been living in Knoxville for the past month, our sweet Jack has been living with my parents, Buddy and Beth, in Chattanooga. This has definitely been the hardest part about our current situation. We miss seeing Jack daily, but it's been very necessary for Jack to stay with my parents as Nathan is recovering. Nathan has been very sensitive to loud noises, and who else does "loud" better than a 19 month old? My parents bring him up at least once a week, so we have been cherishing those long-awaited moments with him. We are SO excited about seeing him when we get home. Thank you, Mom and Dad, for taking care of him. You all have no idea how much you helped me get through this month knowing that Jack was safe and sound with his Meepsie and Bud!

One more member of our family that we can't forget - Yeti! Our friends have been AWESOME about taking him in as one of their own. Thank you Jenna and Adam Shearer and Emily Glascock for taking care of our sweet boy. You all have no idea how much stress you all have lifted off of us. Yeti is our other baby, so we can't thank you enough for not only taking care of him -- but taking him to daycare, taking him to the lake to swim, and just making him a part of your family. 

To all of our friends who have cleaned our house, stocked our fridge, mowed our yard, gotten our mail, done laundry, and whatever else needed to be taken care of in Chattanooga while we were away: THANK YOU. We have the most amazing group of friends who have surrounded us with love and support. We love you all so much. 

All I can say is thank you - again, and again, and again... I am humbled daily by every one's generosity and kindness to my family. You all are giving us more strength and encouragement than you can possibly imagine. We are forever grateful.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving us an eternal glory that far outweighs them all." -2 Corinthians 4:16-17

Much love and many thanks,

Elizabeth