Trip to Naples, FL to see Dr. Valle

First Time Seeing Dr. Valle in 4 Years

With every part of me, I truly believe that God put Preston at the right place with the right doctors that cold January night he rode in the ambulance to Ochsner Medical Center in New Orleans, LA. It was well after midnight once my mom and Preston were placed in a room in the Pediatric Intensive Care Unit (PICU) after their late-night ride. Instantly thrown out of everything they had known to be true, and any sense of normalcy quickly fading away. It was as if they were in a trance. Already reliving the conversations they just had hours earlier with the Head of Neurosurgery at our local hospital. He had looked my mom directly in the face and told her that she and her son would be in a place just like this, meaning hospitals, for the remainder of what would be Preston’s short life. He continued to note that he had never seen scans this bad for the disease we were dealing with (which he hadn’t clarified yet). He had minimal expertise or advice he could offer regarding Preston’s case and already had us making arrangements for the end.

My mom is a fighter. One of the strongest I have ever seen, both literally and figuratively (She’s also a 4th-degree black belt in karate). Sitting in that ER, being told she would soon lose her youngest was not even an option. Never once faltering and keeping a strong face for Preston, she turned the questions around from the Head of Neurosurgery and began inquiring where to take Preston to beat this. Two hospitals were named as potential options that would be better suited to serve Preston’s needs. Hospitals where he would at least have the resources his case would require. That conversation led to Ochsner Medical Center.

Dr. Valle was the first doctor my mom and Preston saw at Ochsner sometime around midnight, and little did they know the impact he would have in keeping my family whole. It goes without saying that from here on out, Preston’s journey is a continuous roller coaster of emotions. As a freshman at Mississippi State University, I had no knowledge of the situation in Starkville, MS. No idea that my mom was entering the private room in hospitals that no family ever wants to enter with Dr. Valle. Here, the cold, hard truth of options was relayed.

Preston had an AVM in his brain, short for arteriovenous malformation, and there were zero good alternatives. So, from what I understand, in option one, Preston could have surgery now to remove the AVM, and that surgery would more than certainly take his life. The AVM was too big. Essentially, a ticking time bomb ready to go off, and touching it would only detonate it. Currently, medical professionals couldn’t believe it hadn’t ruptured yet. Best case? Surgery would leave the entire left side of Preston’s body paralyzed, if he survived, among other potential deficits. Such an outcome was unlikely, and nothing would ever be the same. And option two, take the weekend to discuss with doctors internally and externally.

That was just the first 24 hours, and we took option two.

December 2018 with Dr. Valle

The last time we saw Dr. Valle was in December 2018. Preston was in for his 6-month post-op angiogram from the 10-hour surgery he had undergone in May, removing the right frontal lobe of his brain containing the AVM. From my interpretation, an angiogram is a procedure that gives doctors the best possible view second to the actual view surgery provides and the results were what we had prayed for- the AVM was gone. Dr. Valle told Preston that he would enter the new year with zero limitations and a much brighter year ahead than the last. I wanted to hug him and thank him profusely for all he had done in keeping my family whole. He was moving to Florida, and we were so thankful that he was the surgeon in our corner for Preston. That day I gave Dr. Valle an awareness band that I had created to sell to not only do what little I could to raise AVM awareness, but also help my family with the significant medical bills we faced. I was honestly very nervous to show him, as the clear expert he is, and have some medical terminology incorrect, but he assured me I had gotten it right, phew.

Follow-ups have now seemingly become a norm in Preston’s journey. Whether it’s for an MRI, angiogram, and/or an office visit, it’s like we’re back in the trenches, and no time has passed. Back again, praying for clear scans. Praying that surgery is never on the table again. Last year, however, we heard the words we had most feared. The AVM is back.

It was like déjà vu. Alone in my apartment at Mississippi State, just this time, I was a graduate student, and a call from my mom instead of my dad sharing the news. It was as if the air escaped my lungs, and all the trauma I had watched Preston live through in 2018 came flooding back. I was that scared freshman in a dorm room again, just this time, I knew what AVM meant. I don’t know which was worse, darkness or the flashbacks of happening all over again. The very thought of reliving it all made my body tremor. I broke into pieces.

My family has long discussed when we would inevitably travel to see Dr. Valle for follow-ups. Yes, Preston had some great and highly qualified doctors take over his case, but they weren’t the ones we really, truly trusted. They weren’t the ones who had performed nearly every surgery on Preston. The one who was always in Preston’s hospital room showing us scans and drawing pictures to aid his explanation in bringing everything down to our level. The one Preston wanted to see. The prior year’s angiogram results terrified us. All that was really communicated to us was that this thing that nearly took Preston from us just a few years before was back. The AVM was noted to be small, but no plan of action was given.

So, we drove 11 hours for this year’s follow-up to see Dr. Valle. After 4 years and the conclusion of what one could term the trenches of Preston’s journey. 11 hours to see the one we trusted. It wasn’t until we were sitting in the doctor's office that I could truly see how terrified my mother was. She was carrying a weight so heavy that had burdened her for months. She believed she had failed her son by not making this trip sooner, and it was making her physically sick. All we knew was that the AVM was back, and we didn’t even know how.

As we sat and waited, I began to contemplate if Dr. Valle would remember Preston or even us for that matter. Not only have a few years passed, but I know he’s had to have seen and treated some very difficult cases since. When the doorknob ultimately turned, before I could even see him, he began, “Well, well, well…” and immediately embraced Preston in one of those man-type handshakes that evolve into a hug. I know I had to have been smiling from ear to ear. He remembered us.

After hugs all around, I could tell he couldn’t quite believe we had traveled the distance just for a follow-up and was curious as to the reason why. I think my mom and I were too scared to speak the words just yet about the AVM being back, so we didn’t say anything initially on the subject. We wanted to know what he thought of Preston’s new scans, which were reviewed and determined to look great. Words we had craved, oh so much. We had to have looked like a couple of deer in headlights sitting there. The scans look good. Then how is there an AVM somewhere in there? It really must be small to not show up on the MRI.

I inevitably relayed everything, and information from last summer’s angiogram results was obtained and examined in detail. Dr. Valle then provided us with our options going forward and a plan was made. We now had a plan. Sitting there and watching my mom, I knew she would finally be able to sleep through the night after months. It was written all over her face, and once again, it felt like we could breathe again.

I can’t put into words how content and overflowing with gratitude I was sitting there catching up with Dr. Valle. He wanted to know how every part of Preston’s life has been and is now, and a lot has happened in the 4 years since our last visit. Preston graduated high school and walked across the stage to receive his diploma. A feat that at one time was not guaranteed. He was excelling in karate and loving the time he devotes to doing CrossFit- two things that would never be possible had he suffered from paralysis from the last surgery. Dr. Valle truly cares about the overall health and lives of his patients. How could we be so fortunate? We literally have a rockstar for a doctor who is an endovascular and vascular neurosurgeon. Exactly what Preston’s case required, as AVMs are a type of vascular malformation.

Sporting Our Preston Strong AVM Awareness Bands

A final moment I must share that made my heart so happy was when Dr. Valle commented on the Preston Strong AVM awareness band I was wearing, as it was identical to the one I had given him 4 years earlier. He then pulled from his pocket a torn band, and I was speechless. He still had it and I know it had made a long journey from New Orleans to southwest Florida. He even shared a story with us about how his sweet wife had found it and inquired as to who this “Preston” was on the band. I found it all to be so sweet and humorous. Scrambling in my bag, I knew I had a new, clean band he simply must have.

The scripture included on the Preston Strong band I designed is Mark 11:24. A verse that came to my mother and me at different times of need and emptiness during Preston’s journey that we still cling to today. After Preston’s initial diagnosis, everyone that spoke to me just said, “God gives His toughest battles to His strongest soldiers.” I am sad to admit that I came to resent that statement. I didn’t feel strong, and Preston didn’t deserve this. But as this story notes, God took our hands in our valley of the shadow of death and provided us with everything we needed to survive the journey.

A trip well worth the drive and time. Thank you, Dr. Valle, and all medical professionals for all you do, we are forever grateful.

“Therefore, I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.”

Mark 11:24