June 9th 2000 began like any other day, but by the end of it we would have almost lost our son and started on an eleven year journey of heart ache and despair. Our seven year old son Anthony was home from school that day because he was just getting over a cold. My wife was walking down the stairs of the house where she noticed Anthony at the bottom steps frozen like a statue. She thought he was just playing around and asked him to please move so she can get by. When Anthony did not move she realized there was something terribly wrong. Krista picked Anthony up and he began to convulse uncontrollably, she immediately called 911 for assistance. After the police, EMT and paramedics arrived they rushed Anthony to the hospital. I received a phone call where I worked at a Federal Prison informing me there was a family emergency and I needed to meet my wife and children at the hospital. I raced to the hospital not knowing what to expect since I had no information at this time. When I arrived at the emergency room I immediately saw my wife holding our three year old son Dominic and crying uncontrollably. The first thing I heard was a Doctor informing my wife that our son Anthony has stopped breathing and will die if they could not get him intubated, this was Anthony’s first seizure and it lasted ninety minutes before it was brought under control. Our world as we knew it had come to a horrifying end.
After they successfully intubated Anthony an emergency transport team from Children’s Hospital of Philadelphia (C.H.O.P.) arrived and took over Anthony’s care. When Anthony arrived at C.H.O.P. the testing began, everything from a MRI to a spinal tap to test for meningitis. Anthony remained in a coma for three day’s before he began to awake. When all the testing was complete the doctors still had no answer for what brought on this seizure but felt confident it was a one time occurrence and he should be fine. Anthony was released from the hospital on June 17, 2000 and sent home on no medication and a “clean bill of health”. The next morning was father’s day and Anthony was excited to give me a gift he had made for me, I was just excited to have my precious son home from the hospital. After Anthony gave me my gift and we ate breakfast, Anthony informed us he felt sick to his stomach, within a minute he began to have a seizure that would last for over an hour before the E.M.T.’s and Paramedics were able to get it under control as they transported him to C.H.O.P. this was unfortunately not going to be his last trip to C.H.O.P.
For the next six months our life was a blur, numerous seizures, hospital stays and different medications tried to control his seizures with no success. We finally took Anthony to Johns Hopkins in Maryland to see a Neurologist John Freeman who specialized in uncontrollable seizures. We were told previously at C.H.O.P. that Anthony had a lesion on his temporal lobe which they believed was causing his uncontrollable seizures. The specialist at Johns Hopkins told us that medication would never be able to control Anthony’s seizures and he recommended that we have surgery to remove the damaged brain tissue to give Anthony a chance of a normal life, he recommended Dr Robert Goodman at Columbia Presbyterian hospital in New York City. Dr Goodman went over Anthony’s records and informed us that testing needed to be completed to see if Anthony was a good candidate for the surgery. After months of heart breaking and invasive testing it was deemed that Anthony was a good candidate for the surgery and the surgery was scheduled for August 8, 2001.
Anthony’s surgery took over nine hours, the longest nine hours of our lives. Dr Goodman came out of the operating room and informed us the surgery went perfectly and he was optimistic about positive results. For a year after the surgery Anthony was seizure free. He was being weaned of the high dosage of medications he was on and things were looking up. Unfortunately the surgery did have some side effects which caused Anthony to have many learning disabilities but for him to be healthy we all thought it was something we could live with. After the surgery Anthony, who was eight at the time was taking over twenty pills a day, now a year later we were down to one pill and thrilled. Then for the second time in two years our world came crashing down. Anthony woke up in the middle of the night and informed us he felt sick to his stomach and soon after all our nightmares came true, Anthony began to have a forty-five minute seizure.
As a family we were devastated, one minute we were thrilled that this nightmare was over the next we realized it was just wishful thinking. Through out this whole ordeal Anthony never once complained or said why me he was and still is a very brave young man, but the truth be told Krista and I were saying enough why is this happening to our precious child for the entire family. We began the process of increasing Anthony’s medication until he was up to twenty-seven pills a day. After the surgery when Anthony’s seizures came back they were as long and as deadly as they were before the surgery, the only difference was they were not as often. As time went on we tried to remain as positive as possible but there is never one moment of the day when we are not dreading the words “I am having a funny feeling” which is Anthony’s way to let us know he is about to have a seizure.
To add to all Anthony’s stress from his medical condition and learning disabilities caused by his previous surgery and medications, we found out through Krista’s co-worker that Anthony was being picked on terribly in middle school. The kids found out he had brain surgery and seizures and called him every thing from half a brain to retarded. Again Anthony never told us and kept it all to him self, as parents we were crushed, how could we not know this was going on, why did we not protect him better. We had Anthony transferred to a school for children with learning disabilities where he would not have to worry about being different and start to gain more self confidence. Through out Anthony’s life the one constant thing was that he loved music and about this time he asked us if he could start taking guitar lessons. We jumped on the opportunity for him to find a way to express his feelings. Because of Anthony’s epilepsy and his neurological difficulties we were not sure he would be able to learn to play the guitar but were sure he would put everything he had into it. Through hard work and dedication Anthony has turned into an excellent guitarist.
2010 began and Anthony’s seizures once again become more frequent. Anthony was unfortunately on toxic levels of seizure medication so increasing them was not an option. In November of 2010 we again contacted Dr Goodman to try to figure out if there was anything we could do to control Anthony’s seizures. We met with Dr Goodman and he informed us that he believes we should again begin testing to see if Anthony would be a candidate for another surgery to remove a larger section of his temporal lobe where the seizures are generating from. In December we once again began the heart breaking and invasive testing and it was again deemed that Anthony was a good candidate for the second surgery and the surgery was scheduled for March 14, 2011.
This surgery was different from the first one Anthony had ten years prior. This surgery was a two part surgery; on March 7, 2010 they performed the first surgery where they opened Anthony skull and attached electrodes directly on his brain so they could map out the exact location were the seizures were originating from. After the electrodes were attached they closed Anthony back up and during the next week he was taken off his medication in order to capture his seizures while the electrodes were attached. Anthony had a total of fifteen seizures in the next five days but again he never once complained just laid in his hospital and played his guitar.
On March 14, 2011 the second surgery was performed and Dr Goodman removed a much larger part of Anthony’s left temporal lobe then they had previously in the first surgery. The way Dr Goodman described it to us was during the first surgery in 2001 he removed the amount of tissue about the size of a dime, this surgery in 2011 the tissue amount was more equivalent to the size of a baseball. We were warned that because of the amount of tissue removed there was a chance Anthony could still have seizures up to six months after the surgery. That night as I sat in the hospital room just watching Anthony in amazement, proud of him for being so brave and fearless it happened, Anthony had a seizure. After he woke up for the first time since this nightmare began on June 9, 2000 Anthony said four simple words that were like a dagger through my heart, he said “It’s Just not fair” and then drifted off to sleep as I cried uncontrollably though out the rest of the night. When Anthony woke up the next morning he did what he has been doing since this all began, he picked him self up, informed me everything is going to be alright and began playing his guitar.
Anthony had continued to have seizures since the second surgery; we were all still holding out hope that we will be able to get them under control. Anthony is without a doubt the most amazing person I have ever known and he will not let anything stand in his way. After having another seizure on the Seaside Heights boardwalk during the 4th of July weekend 2011 we were devastated, did we put Anthony through all this again for nothing? It had been four month’s since the surgery and he was still having severe seizures. That night as my wife was trying to help Anthony fall asleep he once again amazed us by informing us that he believes one day his life will be good. Anthony was still having many seizures so his Neurologist recommended because Anthony is already on three seizure medications and is still having seizures he should try a VNS (Vagus Nerve Stimulation ) implanted. Unfortunately the VNS did not help. We decided to take the Doctors recommendation that another surgery will help Anthony and allow him to have a quality of life he deserves. This August 9, 2013 Anthony had his third brain surgery for epilepsy that removed more of his temporal lobe. Unfortunately this surgery still did not slow down Anthony’s seizures and he had to have two more surgeries to remove the remaining parts of his Temporal Lobe. In May of 2015 during the removal of the last of Anthony’s temporal lobe they doctors were able to access Anthony’s Seizures were originating from his Insular Cortex they were able to map the area and bring Anthony back in for a RNS Neuropace implant. Anthony has had the RNS for six years not and it still cannot control his seizures but the data they are able to retrieve has confirmed his seizures are still coming from the Insular Cortex. Anthony is currently on four types of seizure medication and has pretty much tried all the seizure medications out there. At our last doctor’s appointment Anthony’s Neurologist informed us he will be attending a conference November with Neurologists from around the word to discuss and share information on Insular seizures which as we have come to learn are the most difficult to control. We still try to remain positive and still have hope that one day Anthony will be able to enjoy the quality of life he truly deserves. Although Anthony is the one suffering with this terrible condition he is the one that holds us all together, without a doubt in my mind he is the bravest person I have ever met. When faced with a challenge Anthony does not shy away he accepts the challenge and puts all his effort into conquering the challenge.
Thank you so much for taking the time to read about our son Anthony’s history with Epilepsy,
Robert & Krista Jones