A little over 5 years ago, Alec got wheeled back to an operating room where he would spend 5 hours undergoing brain surgery to have a resection (removal) of a small portion of his brain. It was the culmination of years of treatment, countless medications and MRIs, 2 brain surgeries, and more doctor’s visits than we would ever wish on anyone. This is a part of our story that we don’t often share because when it happened, it was terrifying, and we didn’t want it to ever impact our business. Today though, we are celebrating one of the biggest milestones, and one the doctors said would never happen… Alec is officially 5 years seizure-free, and according to his doctors, he is officially out of remission and considered “cured!!”
We thought there would be no better way to celebrate than to share the testimony of all God has done in our lives. We saw Him move in more ways than we could ever write in a blog post, but we will do our best to cover a few of them. So, we’ll start from the beginning…
Alec was first diagnosed with epilepsy at 8 years old when he had a weird episode at his neighborhood pool. An off-duty EMT noticed what happened and immediately informed Alec’s parents that he had just had a seizure (thank goodness for first responders!). They quickly took him to the doctor, and he went on epilepsy medication for the first time.
Fast forward to college when we met and started dating, and his meds had stopped working. Alec was having multiple major seizures a month and multiple types of seizures. It was terrifying as he would sleep walk after seizures and often get injured. One time he even put his head through a wall, and another, he fell right into the corner of a dresser. His neurologist said that before they could send him for a surgical consult, he would have to complete 2 years of trying various medications to prove that a medication change wouldn’t stop the seizures.
Unfortunately, they did not stop no matter what combination of meds they prescribed him and the seizures kept getting worse. He was then sent to UAB to meet with some of the top neurologists and epilepsy specialists in the US. It was a scary process but a blessing in every way. Pretty quickly, they decided to admit him to their epilepsy monitoring unit, where he would be strapped with a ton of wires to measure his seizure activity, and he was watched 24/7 for a week. The hardest part was not knowing how long he had to stay. The hospital wanted to induce seizures and needed so many recorded to get a good feel for what was going on. He was taken off his meds, kept up late, and woken up regularly to try to stress him out and push it to the point of a seizure. Through this crazy process, we would discover he was having more seizures than anyone could have imagined.
In the midst of all these medical visits, medication swaps, and seizures, something bigger was happening. Alec was losing his memory. Key moments of his life, as well as small everyday ones, were gone. It was heartbreaking and made no sense until we asked his neurology team what was happening. They quickly shared that this is a common side effect of seizures and seizure medications and that the damage was likely irreversible. If you ever ask him if he remembers an old story and he says “no,” this is likely the reason why.
As you can imagine, this was incredibly disheartening. We didn’t know what the future would look like, and it scared us, but we knew God had a plan for us, one for good and not harm. He was creating a story for us that we could never have imagined. This was around 2014 when we got married and started Katie & Alec Photography.
As we mentioned, Alec’s brain surgeon met with us before the first of his 2 brain surgeries to tell us he would never be cured. They couldn’t find any issues on his MRIs and brain scans, and his stay in the EMU didn’t reveal the source of his seizures, so they couldn’t do anything to stop them. They walked us through palliative care options that would help relieve some of the symptoms but never stop them. They were invasive, some experimental, and difficult to think about. She gave us a grim 0.02% chance he would ever be cured and even then said that was optimistic. We left that meeting feeling overwhelmed, emotional, and upset with the results. It wasn’t what we had hoped and prayed for.
“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. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-10
His first surgery was set after this to get a deeper look at his brain. We kept living, praying, and building our business just like normal because that’s all we could do. We even timed our 2nd-anniversary photos and headshots around his next surgery to ensure he had hair. That’s the only reason these two southerners would brave 23-degree weather in a thin suit and cocktail dress!
This time they drilled multiple holes into his skull and randomly (the doctor’s word) placed 13 long electrodes directly into his brain. He was admitted to the EMU again for constant monitoring and was wearing wires literally out of his head. They took him off his meds again, restricted his sleep, and tried to induce more seizures. It was here where God showed us just how loved Alec is. We had countless friends, family, and church staff stop by to be with us in the hospital. They brought board games and food and prayed with us as we nervously spent day after day in the hospital. They made those dark, trying days a whole lot brighter, and we are eternally thankful for everyone who walked through that time alongside us.
Ten days later, he was sent home to await the results. When we arrived at the surgeon’s office to discuss them, God showed up with an absolute miracle. The doctor went on to tell us that they hit the spot that was causing his seizures dead on at the exact angle the cells were going in. As she put it, it was like hitting a bullseye while playing darts in the complete dark. Those “randomly placed” electrodes weren’t so random after all, and we saw God’s hand at work. Our chances went from a 0.02% to a 60-90% chance he could be cured!
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28
They just had to present him to the board for a final decision (a process he’d already undergone). We waited months for them to hear his case, and when they did, they recommended the resection!!! It was such an answered prayer, although it was another scary step. This time, he would have his skull cut completely open by a robot, a portion removed temporarily, and they would actively remove a piece of his brain. It was no small task, as the part they were removing was in the middle of his brain. This approval also meant he would have to undergo months of testing to make sure the part they were removing wasn’t essential. There were so many things in the air.
After months of testing, they determined this part of his brain was the part that recognized patterns, and it wasn’t essential. So, the surgery date was set, and we were told to prepare.
When the day came, it was absolutely terrifying for everyone involved, mainly Alec. His first brain surgery was scary, but this was a whole new level. All we could do was pray he would come out of it okay. Thankfully, UAB has some of the best technology, and our neurosurgeon was a true gift from God. She is known for her talent, compassion, and knowledge, and man did it show! Alec came out of surgery in just 5 hours, and it was a total success! They were able to get everything out that they needed to! He was sent home the next day with 37 staples in his head (which we won’t show you because it is far too graphic).
They told Alec to take it easy as healing looks different for everyone. In true Alec fashion (a little stubborn and totally determined), he was back to work in 3 days and shot a wedding 3 weeks later, which is wild to think about! He simply wore hats to hide the staples and shaved head. He healed so quickly and totally stopped having seizures for the first time since he was a child.
Now, here were are 5 years later, and Alec is officially cured of epilepsy. Y’all, he is cured!!!!
“The Lord has done great things for us; We are glad.” Psalm 126:3
While this doesn’t guarantee he will never have a seizure again, it is an incredible milestone! His doctors told him that at 2 years, patients are considered in remission, much like cancer patients when they show no signs of cancer. At 5 years, they can confidently call him cured. This is a milestone we never thought Alec would make it to and one we wholeheartedly are celebrating!!! We will never take this blessing for granted.
He does still take medicine as a preventative measure and sees his neurologist yearly. It is a small price to pay for his healing, and we celebrate every time we think about how far we have come.
If we could sit down and share every way that God worked in our lives, share every testimony of His goodness, and encourage you with Alec’s story, we would. We saw God move in a real, visible way that we will never forget. He delivered us from darkness and pain into healing and life again! He provided us with peace beyond understanding and with a community of people who rallied around us when we needed them most. He helped carry our business when we had to step away to care for Alec’s health, and we saw abundance year after year that we didn’t deserve. God has been infinitely kind to us and saved us from so much.
If you have questions, please don’t hesitate to ask when you see us. Alec doesn’t mind sharing and has talked to many others who currently suffer from epilepsy related seizures about his journey. Walking that journey alone is scary, and even though his story might be different from yours, we know what it’s like to go through epilepsy yourself and having to watch a loved one experience it. If we can pray for you or someone you love, please let us know about that too. It would be our honor to partner with you in prayer for whatever you are facing.
We also highly recommend you check out and support the Epilepsy Foundation. Their website was a godsend to us and a valuable resource during Alec’s surgery journey.
Katie & Alec