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