Thank you so much for viewing my fundraising page! I am running in the NYC Half Marathon as part of TeamFACES. The race is Sunday, March 15th and I'm very happy to be raising money for FACES (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center.
FACES is a great charity that is dedicated not just to helping to find cures for epilepsy, but also to help people and families living with epilepsy. They do this through research, education, and clinical/community support programs.
To learn more about FACES, please click here to watch their video.
My youngest son, Dylan, suffers from epilepsy. Hopefully, we will soon be able to say that he "suffered" from epilepsy because he has been seizure free since he had a surgery 10 months ago! Below is the complete story about what our experiences were with Dylan, which is really a story about how a 2/3 year old is stronger than his parents! (Dylan is now 4 years old.)
The short story is that he is very lucky. His seizures were caused by a focal cortical dysplasia in his right frontal lobe. A cortical dysplasia is a congenital defect where a set of neurons in an area of the brain are malformed. Luckily, his was operable. This operation has likely cured him of his seizures!
Unfortunately, not everyone is as lucky as Dylan. So many other children and adults in this world suffer from epilepsy and in the majority of cases, there is no surgery option that can rid them of this horrible, life limiting, and life threatening affliction.
But, there's hope! This is why I am asking you, no, begging you, to donate as much as you can to this great cause. The more resources that are devoted to finding a cure, the more likely a cure will be found and Dylan's miraculous story may one day be the norm and not the exception for the majority of people who suffer from Epilepsy.
Disclaimer: This is not a short story, but it will really give you insight about how much of a trying time this was for our family, but how lucky we are and how much we wish others could be as lucky to be cured of epilepsy.
While at a "concert" that was given by Ethan and his camp mates at his summer camp in August, 2013, Dylan had his first seizure. Unfortunately, it wasn't his last. We called the doctor and described it and the doctor said that we should go to the emergency room immediately. We were in the hospital for the better part of a week in what can be described as an emotional roller coaster. I'll give you the detailed blow by blow since I think that is the best way to convey how emotional an experience it was and how scary this roller coaster ride really was. It was the worst week in my life and I remember every detail (I wish I'd forget). First, they ordered many tests and all the while assured us that many children have seizures and that it almost always can be controlled via medicine and that they usually outgrow them.
On day two, they did a full work up of his cardio system and everything was fine. Then they ordered an EEG and saw some abnormal electrical activity, but still felt like it was nothing to be alarmed about. They decided to order a more comprehensive 24-hour video EEG, which required him to be in his bed the entire time. Having a two year old stay in one bed is no small order and the poor thing kept crying and asking to go home by hour six. On day three, we received the first piece of bad news, that the abnormal electrical activity was concentrated to one area of his brain. There are many reasons why this would be true, ranging from benign specific circuit wiring in one area and benign blood flow issues to an aggressive cancerous tumor. Of course, at this point, I knew that only because of the massive amount of research I was doing while at the hospital. Even still, we were reassured that in the vast majority of these cases, the electrical activity is localized and nothing abnormal is found on the MRI, but they have to order one just to be safe. At this point we were working with a neurologist and while I was concerned from the moment we came to the hospital, I'm generally an optimist. This was the first moment I actually was extremely alarmed and very scared. I think my wife, Emily, was in total shock from the beginning.
I took Dylan to the MRI where he was put under for the tests. The battery of MRIs lasted an hour and I then came back with him to his room. About 45 minutes later, the neurologist walked in with her intern and I immediately knew it was bad news. It usually takes hours for test results to filter their way back to the patient in my (at the time) limited experience with such things. Having her come back so quickly was all I needed to know to realize there was a problem and I started tearing up as she walked in. Now hospital rooms are small, it takes but three or four seconds to walk from the door to the bed. I'd say it seemed more like three or four minutes. I remember when I made eye contact with the neurologist, and it confirmed what I already strongly suspected by her just coming in when she did, she had a look like you get or give when you see someone at a wake or funeral. That "I'm so sorry for you" look. I took Emily's hand because I knew what was coming.
She gave it to us very quickly, which I appreciated. She said that there was a lesion on his right frontal lobe that was consistent with that of a low grade glioma. She also explained that a glioma is a tumor that is usually malignant and that it would need to come out. There was little chance that it was a very aggressive tumor because the brain tissue around the lesion did not appear to be damaged or swelling, which is what would happen with a fast growing tumor. There was also a chance that it was a cortical dysplasia (mal-formed brain tissue at the neuron level). At the word glioma (I knew what it meant because I had been reading about the brain for almost 48 hours straight at that point), we both were crying. I tried not to cry, to be strong for Emily, but it was impossible. I did ultimately stop towards the end of that conversation and became very analytical about the whole thing from that point forward, but Emily cried constantly. It was tough for us. Dylan, by far, was the strongest of us three!
More tests were ordered, but at this point we met with a neurosurgeon and an oncologist since the most likely scenario was that it was a cancerous tumor that would need to be removed and that follow on procedures would be required. We came to the hospital on a Monday evening. These meetings all took place on Wednesday evening and they booked the operating room for that Friday and the additional MRI tests on Thursday. Half of those remaining tests were to narrow down the odds of what we were dealing with (glioma, benign tumor, or a cortical dysplasia). At this point I started investigating the neurosurgeon, the neurologists, and the hospital we were at and I used many sources.
While not the ideal hospital (we weren't at NYU yet) and not the very best neurosurgeon, the location of the lesion made it an easy (if brain surgery could be called such a thing) surgery and there was the element of time. Since the odds, at this point, were that it was a malignant tumor, we decided to move forward with the hospital's plan with the doctors they thrust upon us.
The results of the second battery of MRIs were shared with us immediately at the hospital. In fact, they took us back to the radiologist's area behind the MRI machines and the neurosurgeon went over things in great detail. He had a large smile on his face and I wondered why he was in such a good mood. It turns out that the chemical composition of the hemispheres in his brain were very consistent with a normal brain. This is nearly impossible when the lesion is a tumor. The more detailed MRI also showed the shape of the lesion and based on both of those things, the odds of the lesion being a cortical dysplasia were now north of 90% whereas all previous indications were that it was a low grade glioma. There was still a small chance that it was a low-grade glioma and almost no chance we were dealing with an aggressive tumor. The only way to know for sure, though, would be to do a biopsy and the only way to do that would be to open his skull, and if they were going to do that, they would simply remove the whole lesion anyway.
This was, of course, great news, until we learned that there is little hope of controlling seizures that are caused by a focal cortical dysplasia with medicine. Based on that, the neurosurgeon still wanted to proceed. In fact, he was pretty insistent on it; however, in later meetings with the neurologist and others, there were varying opinions. This caused us to pause and do more research (albeit under duress). Since a cortical dysplasia is formed in utero (it's congenital), he was born with it. It doesn't grow. It doesn't spread. It doesn't have any other side-effects and, while under 40% odds, there was still a chance it could be controlled permanently via medicine.
We decided to cancel the surgery at which point we received my favorite quote from the neurosurgeon, who, among other, better arguments, actually asked if we were sure "because he already has the OR booked"! I stumbled on a quote from a nurse during my intense research that week that sums it up perfectly, "there is nothing more dangerous than a surgeon with an open OR and a mortgage to pay". We decided to try the medicine route with monthly MRIs that would be used to verify that the lesion wouldn't be getting any bigger. In each of his monthly MRIs after that, it never changed which increased the odds that it was a focal cortical dysplasia up to about 98% at that point.
Shortly after that experience, Emily and I decided that we would work with the epilepsy team at NYU, which is where we first heard of FACES. The doctors there are exceptional and we worked through 9 months of trying different medicines at varying dosages to try to eliminate Dylan's seizures. Nothing worked and he had at least one seizure per day. The recommendation from the neurologists and the neurosurgeon was to proceed with a surgery to remove Dylan's lesion.
We were told that there was a 90% chance he will be seizure free after the surgery and only a 5% chance he will have a permanent deficit. The lesion was one gyrus removed from his motor cortex (better than being IN his motor cortex), but because they were to cut a margin around the lesion, he might have ended up with a droopy left half of his face or left hand weakness. With only a 5% chance that something like that would be permanent and such a large chance of success, Emily and I were confident that we were making the right decision.
The surgery and the days after the surgery were somewhat of a nightmare. Again, though, Dylan is much stronger than we are! His surgery was done in two stages, separated by nearly a week between visits to the OR.
In the first surgery, the neurosurgeon removed the lesion and placed electrodes on Dylan's brain to measure electrical activity to verify that the surgery was successful. This meant that wires were connected directly on his brain and he was, for the lack of better words, "plugged into" the wall and could only move a few feet away from his bed. For the first few days, this wasn't a problem because the poor little thing was so heavily medicated, he didn't even really want to come out of bed. For the remaining days, though, he was in pretty good spirits, which had us relieved. Also, most importantly, he was using his left hand and foot with seemingly no deficits!
They measured his brain activity while we stayed in the PICU for a full week. After the first two days, Dylan was basically back to his old self, playing games, playing with puzzles, coloring, and it was such a relief to see that! Emily and I were total disasters, but he was fine, it seemed! In fact, the support we gave each other and the tremendous support we received from our family and friends, so many of which visited Dylan in the hospital, saved our sanity.
The reports we received back from the EEG technicians were great, Dylan did not have any abnormal electrical activity! So, the second surgery was performed. They removed the electrodes and put in a series of titanium plates and screws in his head. As I type this, it is still so surreal and I still get emotional thinking about how there are plates and screws in our baby's head.
Two days later, we were out of the hospital and Dylan was back to his old self as soon as he got home. One of the most welcome sounds I heard all day was when Ethan and Dylan started fighting with each other. The sounds of normal in trying times are like music to the ears, even when those sounds are incessant yelling and screaming about who gets to play with an iPad!
Ten months after his surgery, Dylan is still seizure free and we are hopeful that he is cured!
If you've read this far you know now why it's so ironic for me to say that Dylan was lucky that he had a cortical dysplasia. It certainly didn't seem like it was lucky when the neurologist walked in that Wednesday in his first hospital visit on Long Island to tell us he had a lesion. But it was lucky, because it meant there was a cure. That's why I'm so excited to support FACES. Please help me to make today's incurable epilepsy tomorrow's miraculous story by donating today!