Nearly a year ago, I drove Spike to Cleveland in the hope that the doctors there could improve his life. Instead, they gave it back to him. They gave it back to me – and to all of the other people Spike will ever know.
Last week, we returned to Cleveland to thank the doctors and nurses.
In June, I was surprised by a call from the Cleveland Clinic Pediatric Epilepsy Center. They wanted to know if we would attend the biannual pediatric epilepsy surgery reunion. Every other year, they invite back all of their patients and families to attend a few seminar sessions and meet each other. Of course I jumped at the opportunity. What better way to thank everyone then to show them what had happened to the sick little boy we brought to Cleveland last year.
As mentioned in a previous post, the clinic also wanted to know if they could film Spike for a documentary piece on epilepsy surgery. The local news story previously posted here was an outgrowth of that request.
Part 1: http://triangle.news14.com/content/top_stories/662282/brain-surgery-saves-cary-boy-s-life
Part 2: http://triangle.news14.com/content/top_stories/662310/cary-5-year-old-heads-to-kindergarten-after-brain-surgery
At a pre-dinner reception, we met one of the neurologists who had taken a special interest in Spike. He was overjoyed to see Spike doing so well and running around playing with all of the other kids. He asked if I would bring Spike up front and say a few words after dinner to all of the families. Fortunately, I am a very good public speaker and standing up in front of a crowd and speaking on any topic is just about the most comfortable thing in the world for me. Usually.
When I got up and started to tell Spike’s story, I immediately choked up. I stopped, looked out at everyone and started again.
“I’m not going to tell any of you something new. Every one of you has lived through the hell of that first seizure. You’ve held your child and wondered why? Why?”
I then went on to describe Spike’s epilepsy progression, the failed drugs, the countless tests and then the amazing respite offered by the ketogenic diet. When I started to describe the reemergence of his seizures, I choked up again and rushed through the surgical work up and the agony of watching them wheel Spike into the operating.
“You all know how that feels. You know the fear and the hope. Most of you know the joy, tempered with never ending worry when the surgery proves successful. You know where that joys comes from – the hands of these doctors.”
I turned to the doctors with tears streaming down my cheeks and just said, “Thank you. Thank you. Thank you for giving me my Spike back.”
Not everyone is as lucky. There were kids there who had residual impairment. There were kids there who had many other complicating conditions. There were kids there for whom the surgery did nothing at all. Even the amazing doctors could not help everyone but they did take the most difficult cases and they helped most of them – and no one more so than Spike. He does not have residual impairments. He does not have complicating conditions. He does not have seizures. I hope the doctors know what that means to all of us.
I think the doctors put on the reunion every other year to remind themselves why they do what they do. Dr. William Bingaman and Dr. Jorge Gonzalez-Martinez are the pediatric epilepsy neurosurgeons at the Cleveland Clinic. In my mind, they have just about the most difficult jobs in the world yet they are always patient, thoughtful, calm and caring.
Both of the surgeons were off helping other patients the night of the dinner but we saw Dr. Gonzalez first thing on Saturday morning. I’ve been waiting nine months to thank him, knowing just what I would say. Of course, when I actually saw him, I couldn’t say a thing. My gratitude simply overwhelms me but I think he understands. He gave Spike a big hug and then posed for a picture while I found my voice. He then asked how Spike was doing and I flooded him with details and questions. The truth is, Spike is doing great but I’ll never stop worrying or coming up with strange questions. I imagine Dr. Gonzalez will continue to answer all of them.
The first night of the get together, the session after dinner that I attended was simply parents talking about their experiences with focal resections (removal of part of one side of the brain). The other, concurrent session was for parents whose kids had hemispherectomies (removal of one complete side of the brain). In my group, we sat in a circle and told our stories. As I listened to the stories, I was horrified by what these kids and their families had gone through. Some of them were far worse than what Spike had endured. Of course, everyone had already heard Spike’s basic story at dinner (great dinnertime conversation, eh?) but I filled in a few details and then listened to the others.
After one particularly difficult story was told, I leaned towards the mother and asked, “How did YOU survive? How could you possibly deal with all of that? Where did you find the strength?”
She turned to me, crying, and said, “I was going to ask you the same thing! Poor Spike! No one should ever have to endure that. How could he live?”
Everyone then started saying the same thing. We all thought everyone else’s kids had been through worse ordeals than our own. THAT is how bad intractable epilepsy can be. It just rips your heart out, thinking of what these kids endure – and makes the success stories that much more amazing.
Unfortunately, even the successful outcomes are not perfect. We heard of many cases where the kids were seizure free for months or years, even a decade or longer – and then the seizures returned. Nonetheless, the improvement in quality of life for most of the kids – and their families – is stunning. The doctors truly do give life back to all of us. Even when it is not a perfect outcome, in the vast majority of cases, it is a very good outcome, measured in terms of improvement. Even so, the stories of relapses years down the road remind us that the monster may very well lie in wait. As I have often thought, you can never say your child’s seizures are gone. The best you can say is he has not had a seizure in so many days or months or decades.
Spike celebrated nine months of seizure freedom the day before the reunion. I am looking forward to the first full year without seizures, then the first full decade. I worry but I look forward nonetheless.
One particularly compelling story came from a very well spoken young man who had surgery 14 years ago. He’s been seizure free since then and is now set to start graduate school. He looked and sounded like the All American Boy and he knew it, but not in a bad way. He just had self confidence and presence. He was there not as a speaker but simply as another patient. He came with his older brother who filled in parts of the story. The most important part was not the end state or all of the markers of success. He came to tell us about the other stuff. Doing poorly in school, having problems concentrating, drug side effects, constant worries about relapse. He told us that he had been through all of that. He told us that he had not been a very good student after his surgery and that he knew at the time that he just wasn’t as capable as the other kids. He then told us the most important thing of all.
“I am successful today because MY PARENTS NEVER GAVE UP! They found me help, the pushed me to realize my potential rather than just get along. They gave me all the help they could and then told me I had to work harder than everyone else because of my epilepsy and my surgery and they were right. I did have to work harder but it WORKED. You guys have a tough job ahead but DON’T GIVE UP. Don’t assume your kids can’t do as well as all the other kids. They can but it will take a lot more work. Don’t you think it’s worth it?”
Listening to him, I recalled what one of the neurologists had told me right after the surgery. He said that Spike would probably be much better without the malformed portion of his brain and he would likely regain function. Nonetheless, taking a big piece of brain out is traumatic. Synaptic connections are broken, whole areas that are designed to cover certain functions are simply gone. He told me that in a kid Spike’s age, a lot of this function could be reestablished but how well that happened was up to us. We needed to push Spike to learn and to do things that might seem frustrating or difficult. The very process of learning and figuring out difficult mental and physical issues actually causes the brain to rewire itself. The missing tissue will never regenerate but the quality of function, assuming no complications, is a direct result of how much Spike works at things. We have seen this recently as he practices his writing and coloring and counting. Of course every kid amazes their parents with their mental and physical growth but we can see Spike getting better every day as a direct result of his effort rather than simply growing up. This is very gratifying but also a warning to never give up because, if we do, his growth will slow and he may never catch up.
Many other topics were covered throughout the two days from drug effects to emotional challenges to effects on siblings. The parents came from every walk of life with every educational background you can imagine. What amazed me was how everyone knew everything possible about the science and medicine concerning epilepsy. These parents dug into the issues with obvious passion. I also noticed that, unlike every day at the office, no one’s attention wandered for a minute. Everyone listened intently to everything being said.
The doctors paid attention too. In one session, a neurologist made the suggestion that someone bring his kid to the emergency room in certain circumstances. No one said anything but the doctor looked around the quiet room and asked, “Did I say something wrong?”
A gruff farmer cleared his throat and said, “I think I can speak for all of us. We don’t go to the ER for epilepsy.” Everyone nodded.
“But why? The ER doctors know what they are doing,” the doctor responded.
“ERs are great for bullets and broken bones,” I said. “Not so good for diseases.”
Everyone agreed with that and then educated the neurologists and surgeons on the challenges, ignorance and sometimes danger that ERs can present to certain epileptics.
One mother summed it up well when she said, “The ER docs might be great at handling 98% of seizure cases presented to them but, as you well know, our kids are in the 2% the ER docs don’t understand. No one, and I mean NO ONE, knows our kids as well as we do. You’d best not give my child an anti-seizure drug without my explicit approval because I know what might save him and what will most certainly kill him.”
These parents may not be doctors or scientists but they do know a lot about intractable epilepsy and the unintended side effects of certain treatments because they have seen the effects first hand. They all agreed that they would come straight up to the epilepsy ward rather than go into the ER.
Importantly, you should not take this as advice! The vast majority of first time seizures can and should be handled by the first available physician. If your child has a seizure and does not immediately recover, call 911 and get him to the nearest emergency room. The EMTs have effective anti-seizure medications that could save your child’s life (although in very, very few cases are such medications ever needed as kids almost always come out of a first seizure just fine) and the standard treatment provided by ER doctors is appropriate and effective. If your kid has a first seizure, more likely than not, he does NOT have epilepsy. There are dozens of reasons for a first seizure. However, none of those percentages applied to the parents in the room at the conference because their kids represented the worst of the worst when it comes to intractable (meaning it does not respond to medication) epilepsy.
I also attended a session on psychological issues connected to epilepsy. Depression, suicidal thoughts and other cheery conditions are much more prevalent amongst epileptics, even those whose seizures have been successfully treated by surgery, than the general population. You just can’t let yourself get distracted – you have to always watch for the monster lurking in the background.
So where were the kids while all this heavy conversation went on? You can imagine the concern this group of parents would have about leaving the kids alone or in a large group with a couple of adults. The event organizers obviously realized this and took care of the kids (and, importantly, the parents) by assigning a volunteer to no more than two kids. The volunteers stuck close to their kids throughout the day and the kids had a grand time. From what I could see, the kids were entertained by jugglers, animal trainers, singers and who knows what else. During a break in the adult sessions, we all went to see the kids. The kids didn’t want to see us! They were having far too much fun.
One of the funnier moments occurred during the psych session, which was held just the other side of a decidedly un-soundproof wall from the kid area. They were playing loud, pounding disco music and then stopping it suddenly and I guess the kids would freeze.
As the sound amped up, we all looked at each other and I said what was on everyone’s mind. “If they have a disco strobe light going in there, we’re going to have 45 kids having a group seizure!”
Everyone laughed at that…but then looked at the wall, somewhat concerned. Fortunately, no seizures were reported as a result of K.C. and the Sunshine Band – although I admit I came close to having one myself.
As the seminar wrapped up, I thought again of just how important the work is that these doctors, scientists, nurses and all of the other medical professionals do and, by contrast, how unimportant my daily work seems. I want to give back somehow and make a difference in other people’s lives. Spike’s mother suggested that I could help other parents by writing a book about epilepsy from a parent’s perspective. I immediately agreed and have already started work – in fact, the book is practically writing itself. I have learned enough about the science to get it down on paper and I know plenty of medical professionals who will proofread it and correct my errors.
Of particular interest to parents, I also know what the doctors admit THEY don’t know and I think I can explain that in terms that people will understand so that they can ask the right questions and have a head start on interpreting the sometimes ambiguous answers.
When Spike was first hospitalized at Duke, a friend and colleague with a very sick daughter came by to explain what she knew about seizures. She gave us knowledge, advice and comfort at a very uncomfortable and confusing time. I hope that I can return that favor by passing on our hard earned knowledge to others.
When I first returned to work after Spike’s brief, initial hospitalization back in the days when four seizures in one day seemed like a lot, I gathered my wonderfully supportive staff together and told them the following.
“I’ve read about epilepsy and I know the numbers. By my count, there’s likely two or three of you who have a child that has epilepsy. If you can, please talk to me about it. I’m scared and confused and I could use your help. I know that when your child started having seizures you undoubtedly thought ‘no good can come from this.’ Well, you’re wrong. Good CAN come from your struggle. You can tell me about it and help me help Spike.”
Several people did come forward and tell me their stories. They gave me strength and knowledge at a critical time and helped beat back some of the fear.
Now it is my turn to make something good out of this experience.