Friday, November 9, 2012

8:48 + 1 Year : No Seizures!

One year ago today, I helped wheel Spike into surgery and watched his final seizure.

How time does fly when you're a healthy boy!

Following the medical miracle, Spike has had a full calendar.

Two trips to New York City.

One trip back to Cleveland for a reunion of epilepsy surgery patients.

Three appearances on local TV.

A treasure hunt.

A birthday party.

A first day of school.

He can now do all those things other five year olds take for granted.

He reads.

He writes.

He hangs from the monkey bars.

He runs.

All perfectly normal activities that seemed forever out of reach a year ago.

I will never be able to give enough thanks to all of those who made this possible but every Thanksgiving Day I will think of all them as we celebrate another year of full, healthy life.

Sunday, August 19, 2012

Closing the Loop - Spike Returns to Cleveland

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.

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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.





Monday, August 13, 2012

Lights, Camera, Action!

There’s nothing quite like your child’s first day at school. Even though you may have sent your kid off to daycare or the grandparents or left him with a babysitter from time to time, that first drop off at school is different. Parents worry and cry and take pictures. I can’t recall ever hearing about that type of behavior when parents finally drop the rugrats with a babysitter so they can go out and see a movie for the first time in five years!

Spike, being a normal kid with more or less normal parents, was all set for a fairly normal first day at school…until the phone rang the week before that all important nest leaving day.

“Mr. Parrent? This is Julie Fertig from News 14 Carolina in Raleigh. I’ve been hearing some stories about Spike and wonder if you’d be willing to have us film him and tell his story?”

Julie had heard about Spike from a former colleague at the Cleveland Clinic. The media department there had called me several weeks earlier and asked if they could feature Spike in a video they were producing to inform people about epilepsy and the treatments available for particularly tough cases. Cleveland had shot some video of Spike before his operation in November. Apparently the combination of his (genetically predetermined) photogenic quality and the way his recovery had progressed made him the ideal subject for the documentary. Naturally, word leaked out, setting off a media feeding frenzy and everyone suddenly wanted to interview the Miracle Boy.

Apparently the phone lines were jammed so only News 14 Carolina was able to get through. Spike’s agent will have to deal with all of the other requests.

I mentioned that Spike was scheduled to start school the following week and the reporter immediately asked if she could tag along.

What’s a dad to say?

While other kids had snapshots taken with phone cameras, Spike went a bit larger.

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Just like any five year old, he carefully loaded his backpack…

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Walked up the hill to school…

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And found his way around the classroom for the first time.

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The best part of his “performance” was the natural acting ability he displayed. Once tape started rolling (or digits started flipping or whatever happens in cameras these days), Spike completely ignored the cameraman. His classmates likewise gave no indication they even noticed the guy with a big camera and a reporter asking questions. They probably felt sorry for Spike since his family apparently couldn’t afford a cool little smartphone with built in camera and had to use a big old clunky camera instead.

Most importantly, Spike’s first day at school went extremely well. He loved every minute of it and has been excited about going back every day. That’s incredible given that nine months ago I couldn’t imagine him ever being healthy enough to sit through a school day, much less one in a normal school without aides watching his every move.

Over the last several months, Spike has been to New York twice (loving every minute of it), learned the fundamentals of swimming, dramatically improved his writing and drawing skills, fallen hard on his head and gotten back up again to run off and play some more. Normal. Blissfully normal.

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Sometimes, normal is just unusual enough to justify a few paparazzi.

Part one of the the local two part story can be seen at:
http://triangle.news14.com/content/top_stories/662282/brain-surgery-saves-cary-boy-s-life

Wednesday, March 21, 2012

Spike-free Spike!

Spike returned to Duke today for the all important follow-up appointment to his EEG test of last week.

Spike has been so healthy and happy lately that I wasn't really anxious about the outcome of the test. So why then did a huge wave of emotion wash over me when Dr. Mikati came in and said "Spike had an excellent EEG last week!"? A weight I didn't even know I was carrying just dropped away. I missed the next couple things the good doctor said and I had to ask him to repeat them to make sure I understood it all.

Now I am no epilepsy expert but I'll do my best to explain what an EEG can show with regard to seizures. There are three indications of potential trouble. The first is "slowing" which I interpret as sort of the background against which the other issues are painted. Spike has always shown some slowing since his first EEG. The second issue is "sharp" points to some of the waveforms. I believe these are slight, short disturbances in the waveform. The final concerning condition is, believe it or not, "spikes." The spikes, I think, are clear indications of seizures or at least the likelihood of full seizures. The spikes are our greatest concern because they indicate that seizure activity is still present.

All of Spike's previous EEG's showed slowing, sharps and spikes. Even the one recorded last June when he was enjoying several months of seizure free activity showed problem areas. I don't recall that it showed actual spikes but it definitely recorded slowing.

Last week's EEG showed no evidence whatsoever of spikes.

Whew!

It did show some slowing and sharp points but the neurologist quickly pointed out (ALMOST quick enough to stop that skip in the parental heartbeat) that he expected it to show that activity. Opening the skull (hope you weren't eating dinner while reading this) apparently disturbs a few things inside (no kidding!) and taking a chunk of grey matter out further mixes up the electrical signals. Apparently, even if Spike had never had epilepsy, brain surgery almost certainly would have resulted in slowing and sharps. Of course, in that case, I'd have a few questions as to why they cracked his noggin! However, Spike did have severe epilepsy and that complicates the picture slightly.

The sharps and slowing may simply have resulted from the trauma of surgery or (and I had to open my big mouth and ask this, not allowing sleeping dogs to snooze peacefully) COULD BE a sign of some residual epileptic activity. Importantly, the doctor does NOT think that is the case and he was very happy with the EEG result.

For the record, Spike has always been Spike. He did NOT acquire this nickname once his seizures emerged. Although his name did lead to one of the best moments of his illness. Back when he was having dozens of full blown seizures every day, he was hooked up to the EEG leads for continuous monitoring. One day, the doctor came in with the actual paper tracings of the EEG to show us what was happening and how he was interpreting the results. He left the tracing with us and Spike asked to see it later. He looked closely at it and then pointed to the spikes and asked if those were the spikes the doctor had been talking about. I said yes and then he asked if that was when his seizures happened. I said yes again. He then lay back for a moment and just looked off into space with the tracing in his hand. He then announced, "From now on, I want to be called Mr. Smooth."

He's smooth all right and so are his brainwaves!

The results today are particularly gratifying given the choices we had to make prior to his surgery. Readers of this saga may recall that the focal point of his seizure activity was very, very difficult to pinpoint. He had literally every test possible to locate the source of seizures but the closest the doctors could come up with was that it appeared to be in the right frontal lobe. At least that's where the activity was showing up. However, there was a very real possibility that the seizures were starting in an adjacent area and simply presenting themselves in the right frontal lobe. Think of it as the spark being in one place and the fire caused by the spark occurring in another. The fire was easily seen but if the spark was outside the area of resection, he could have had just as many seizures after surgery as he had before. We had to make a decision, therefore, about how much of the brain to remove. Remove too little and the seizures would return. Remove too much and he would have a high likelihood of impaired function.

Spike's neurosurgeon strongly advocated for removing as little tissue as possible while some of the neurologists started off thinking it would be safer to remove more. In the end, everyone agreed with the surgeon and he removed as little as possible (still a sizable chunk), risking seizures for a better chance of maintaining function. Today's results validated that approach. Spike's rapid recovery is due, in part, to that decision as well.

Next steps for Mr. Smooth are ... just being a kid.

Spike will go in for evaluation by the school district as to any special needs he may have in school. The need for special attention, if any, is related to fine motor skills. His cognitive and language skills remain excellent. He could also use a bit more focus (what little boy doesn't need a little more focus?) due to slight hyperactivity brought about by the drugs he still takes. Overall, he's looking pretty good.

Speaking of being a kid, every time I have taken Spike on a boat, he has asked if we are going treasure hunting. Due to a large storm a couple of days ago, a bottle magically washed up into our bushes. When Spike opened it, he found a treasure map and compass! When you have a boat, a map and a little kid, you really don't have a choice - you must hunt for treasure. So yesterday we loaded up the boat and headed out on Jordan Lake.

Our good friend Dave came along both for adventure and safety as Spike can get a little rambunctious on board. I have to admit, Spike was extremely well behaved this time out. I'm still not sure I would take him out by myself but he's getting close. Huge thanks to Dave for making the treasure hunt possible.

Heading out from the marina, Spike kept a close eye on the treasure map. He impressed the heck out of me when, upon being asked where we were on the map, he immediately looked up and all around to get his bearings rather than focusing on the map itself. He's a sailor for sure!

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Once he figured out the various clues on the back of the map, we found the secret cove and went ashore. It took him awhile to recognize the X that marked the spot but maybe that's just because it was right in front of him. Once he saw it, he began digging.

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Lo and behold, there was something buried under the X!

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Spike learned an important lesson out there. As we got ready to re-board the boat, I asked him for the treasure box. Once he handed it to me, I immediately ran off into the woods with it. He'll keep a firm hold on his treasure in the future!

Back aboard, he opened the box to find an odd collection of treasures. I'm not sure it was quite was he was expecting.

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Until he opened one of the leather bags and gold coins poured out!

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He was one happy boy as we headed back in with pockets full of loot.

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One minor problem cropped up today as he was talking about the treasure hunt. "Daddy, next time I want to find diamonds. Lots and lots of diamonds!" Oh boy.

Special thanks to Dave, Timm and Rachel for the roles they played in helping a boy's dream come true.








Friday, March 16, 2012

No News Is Good News!

I know that it is far past time to update everyone on Spike's progress but that progress has been so fast that it's tough to keep up with him myself! As you will see in the following photo collection, the kid is often just a blur.

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What appears to be simply an album of a normal kid's life is, to me, a record of extraordinary recovery. Every picture above highlights a milestone on Spike's ever accelerating forward path. Eating normal food, rough-housing with kids, climbing steps, scaling ladders (!), spending so much time outdoors - these are the things kids do. I just never expected to see Spike do any of them. Now, he does all of them and so much more.

Spike is back in preschool and loving it. He finally has the attention span to sit with me for long books. He can, in his own way, write his name. His imagination is wild and incredibly detailed. His energy level is through the roof.

That's not to say that Spike is all the way back on track with his peers. The heavy doses of medication that he is on lead to a special kind of hyperactivity. He is not out of control and running around. Rather, his attention drifts if he does not intentionally focus. When he does concentrate, he can do pretty much anything but, unlike most kids, he first must decide to block out everything else and consciously focus on the task at hand.

His gross motor skills have recovered for the most part. He can climb, run and throw although he shows a certain lack of coordination in many activities. Nonetheless, he somehow accomplishes the task at hand. For instance, he'll skip or canter when he runs but he gets to the finish line nearly as fast as if he were full out sprinting. His throws look odd, but he hits the mark with good force (which puts him ahead of his Dad who just looks funny when he throws and fails to hit anything!)

Fine motor skills are still a work in progress although, again, he can get the job done with extra effort. He can now reliably hold a pencil, feed himself just about anything and pick up small things with no problems. He may not be in line with his peers on each of these activities but, and this is important, he can beat the pants off any of them when it comes to video games. That's indicative of the different developmental paths he and his friends have taken. During the crucial fourth year of childhood development, his friends sat in daycare and preschool all day and learned to write and color and put together puzzles. Spike spent a large part of the year hospitalized and having 50 or more seizures a day. His iPad was his main distraction and he has become an expert on it. You would get dizzy watching him move the iPad around as he plays games yet he continually scores high on the games even though they require precise timing and finger motion.

Fortunately, I see progress every day as we work with him on catching up to his peers on all the other skills. He is engaged in learning, he wants to show off what he can do and he takes great pride in every accomplishment.

The doctors have told us to push him and not let him get away with behavioral lapses or intellectual laziness. Of course it is tempting to just sit back and enjoy all of the natural progress and blame any slowness on the drugs. However, it turns out they are making a different point entirely. This isn't about normal development. After all, he had a large part of his brain removed. Right now, his neural pathways are reconnecting to compensate for the loss (ah, to be young and capable of that!). He only gets one chance to optimize those connections and that chance is RIGHT NOW. Pushing his development apparently helps make stronger and more efficient connections that will serve him well the rest of his life. That amps up the purpose of story time a bit!

His doctors and pre-school teachers have also suggested that we have him tested to see if he is ready for kindergarten in the fall. He has no cognitive issues (ask him to explain the difference between a CAT scan and an MRI and he'll teach you a thing or two!) but his fine motor skills still need work and those skills are important to fundamental tasks such as writing and drawing. Personally, I think we can get him ready but he will go in for professional evaluation in a few weeks. Of course there is also a growing movement to hold kids back a year so that they are the older kids in a particular grade and thus have some "advantage" over the other kids. Personally, I don't buy into that (and it only works if everyone doesn't do the same thing) and I will not agree to hold him back for that reason. On the other hand, if his skills need work so that he is not frustrated in school, I will definitely find another very good program to put him in and either delay kindergarten by a year or skip it entirely if his development leaps ahead during the next year.

Yesterday, Spike returned to Duke Hospital for a follow-up EEG. Apparently this one will be used as the post-surgical baseline for future comparisons. That means that we should not worry much about the particular reading - although a nice, normal tracing would be fantastic (and unlikely given the surgery). Next week, we will meet with his neurologist to go over the results. Spike was, as usual, a model patient for the test. He never complained, he was patient, he was polite and he even fell asleep when they asked him to without the need for any sedatives.

Spike is about to experience another life changing experience. He's moving to the Big Apple! After years of resisting professional opportunities in New York, I finally threw in the towel and accepted a full time position with a major Wall Street firm. I certainly enjoyed working on my own for the past six months but access to quality health insurance simply became too important an issue. I start work at the end of March and Spike will hopefully be up there by late spring. Fortunately (and unbelievably), I found a nice place that is only 20 minutes away from the office (by water taxi - even better!) so I will have lots of time to spend with Spike.

After reading through everything above (I thought this was supposed to be a simple photo essay!), I realized that I left out a very important description of Spike. He is happy. All of the time. He understands what happened to him, he knows that he has to try harder than usual on some things, he feels the effects of the drugs but he is just plain happy with life.

I would like to end on that note and perhaps I should but I cannot. I have very sad news to report regarding another child. Florence McDow is a little angel who lost her earthly battle last week. Sweet Florence fought most of her life against every imaginable condition. Every time she would rally and seemingly conquer one ailment, another took its place. In the end, it was just too much for the little girl. I used to work with Florence's mother, an angel in her own right. When she first heard that Spike was sick, she dropped everything and rushed to the hospital to be with us. She provided comfort, understanding, knowledge and advice that proved invaluable throughout Spike's illness. Our thoughts are forever with the McDow family. You can read about Florence at http://cotaforflorencem.com/

Thank you for following Spike's adventure.

Saturday, December 31, 2011

Walking the halls of the hospital clinic this week, I heard some poor kid's panicked wails echoing off the walls.

"It's going to HURT! I don't want to do it! I want to go home!"

Perhaps somewhat inappropriately, I smiled as I looked down at Spike and said "Quiet down buddy. It's just a blood test."

Spike went through countless blood tests, IV insertions, surgeries, healing, poking and prodding with nary a complaint and now he was screaming about a simple blood draw? Yet another happy sign of normalcy as far as I was concerned.

Go ahead Spike, scream your head off. It's NORMAL for a four year old to hate blood tests!

We were in for a follow up visit with his wonderful Duke neurologist. As Spike and I entered the examining room, the nurse told him that she was going to take his blood pressure. Spike cheerfully declined, saying, "You don't need to check my blood pressure anymore. I am a healthy boy now!" His blood pressure was, of course, normal.

Medically, things could not be better. Although he is not out of the woods yet, every day that passes without any seizures further reduces the chances of them returning ever again.

In three or six months he will have his first post-operative EEG. Waiting for those results will be stressful as any abnormalities could point to potential trouble. Or not. The problem, diagnostically, is that a normal EEG does not indicate that he is cured and an abnormal one does not indicate the seizures will return. Epilepsy is a devious monster that will always lurk in the background but may never show its face again. In fact, at this point, Spike is probably beyond the 50% likelihood of recurrence point - on the good side of 50% for once. Consider that as late as November 8, the chance of him having a seizure in the NEXT HOUR was far greater than 50%!

The doctor did tell us that the longer we keep Spike on anti-epileptic drugs, the lower will be the likelihood of seizures recurring. As I have been vocally anti- anti-epileptic drugs for quite awhile as they were not helping Spike and they were certainly having adverse effects, the doctor took great care in explaining why they keep patients on them so long.

1. The surgery itself may create conditions conducive to seizures regardless of any cure of the original ailments.

2. Some patients who are weaned off of the drugs too early after experiencing no post-operative seizures may suddenly develop seizures that do not respond to any medication OR surgery.

3. There's a lot we still don't understand about epilepsy and the drugs may provide some insurance if the side effects are acceptable.

Well, sign me up for a lifetime supply of drugs then! I will do whatever is necessary to reduce the chance of new seizures.

Of course, I knew this was coming so I was insistent (pushy, demanding, over-bearing) about getting him on an acceptable mix of drugs BEFORE the surgery. The hyperactivity side effects that he experienced from some of the drugs would NOT have been acceptable for a year or longer after surgery. Now he is perhaps a bit happier (in a very slightly drunk sense - not impaired at all, just overly happy) and a bit more hyperactive than he would be without the drugs but the happiness tends to offset the hyperactivity and renders it mostly harmless. In fact, never having raised a little boy, I have no idea what normal is for his age. What's important is that his current condition is more than acceptable forever as far as I am concerned.

The doctor also provided a clear explanation of the pathology results that confirmed my amateur understanding of the report. The malformation in the excised tissue was congenital, meaning that it was present before birth. Something happened long ago in the initial development of that part of his brain that just wasn't going to be fixed or go away on its own. It had to be taken out. Thankfully, we live in a time when that is possible.

Of course, for many children, such solutions simply do not exist. As I was making a follow-up appointment, a family came up with a young boy in a wheelchair along with a seizure dog. The boy smiled at me and I nearly cried. He was alert and aware but obviously crippled by some neurological condition. I'm sure he was there to see the same doctor we had just left and would receive the same quality care that helped Spike. Nonetheless, some random string of events occurring probably before birth left this child with fewer good options. I think about that a lot because I fully expected to be wheeling Spike around myself given how his condition deteriorated throughout the year. My heart goes out to all the kids and families who deal with severe medical issues. I had to take care of my own kid this year. I hope someday I find a way, I hope many of us find a way, to help others in the future.

Spike enjoyed a great Christmas. I'm not real big on Christmas traditions but he has somehow picked up the finer points of the holiday season. He insisted on outdoor lights and he even dragged me out to get a wreath for the door because he said, "You just have to do that at Christmas!"

For the first time, Spike was not the least bit cautious around Santa. In fact, he didn't bother waiting in line. He just marched right up and started reciting his well thought out list of gift requests. Of course, he can blame his lack of inhibition (manners?) on the phenobarbital. Santa understands. I sure hope the poor little girl who was on Santa's lap at the time got her requests in!

We have enjoyed glorious weather the past couple of weeks in North Carolina and Spike and I head out to the woods or water every day. For some reason, he objects to going out every time but I insist and then he has a great time. He runs, kicks pine cones, throws sticks, digs in the dirt, wanders into the undergrowth and basically makes a nuisance of himself. All blissfully normal behavior for a four year old boy.

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Yesterday I took him out to the dam at Jordan Lake (the prettiest setting in all of central North Carolina) for some free range running with a playground nearby in case he showed interest. The first thing we did was climb a steep hill to the lookout platform. I run every day and yet I was getting winded about halfway up. He stopped, wiped his brow dramatically and said, "Phew! What a climb!" He then SPRINTED to the top, leaving me in the dust. That's a remarkable recovery less than two months after such major surgery.

For the first time, he also showed real interest in the playground and climbed around for awhile before running off down a newly discovered trail through the trees. His strength may lag his age peers a bit but he is rapidly making up for a lost year of real physical activity. His coordination is also as good as ever.

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Even though Spike continues to object before going out every day, I have to drag him home out of the woods as the sun goes down. He pretends to lock himself to park gates and trees and then always blocks my way as a last effort to stay outside just a little longer. He generally wins these battles as I cannot imagine better physical and emotional therapy than being outside on yet another father/son adventure.

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On January 2, 2011, Spike suffered his first seizure. That one was the worst by far and still gives me nightmares. As I watched him and grabbed for my phone to call the paramedics, I wasn't sure he was going to survive long enough to get to the hospital. When he came out of it and I raced him to the emergency room faster than the paramedics would have been able to, horrible thoughts crowded my mind about what this all meant. The reality that developed was far worse than all of those thoughts combined. Several times during the year, I was sure we were going to lose him but he just kept fighting back. 3,000 seizures later, Spike has apparently beaten the monster with the help of all the medical professionals on his team.

2011 will probably always represent Spike's worst year. Right now, it also represents his best but I just know he has even better ones ahead - starting tomorrow.

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Saturday, December 10, 2011

An Energetic Milestone

One month ago yesterday, Spike underwent major brain surgery.

Yesterday, I took him to the park once again to enjoy some fresh air.

The kid in the park yesterday is NOT the same one that I helped wheel into the operating room.

The New Spike is not only seizure free after a month, he is a bundle of joyous energy. He is happy all the time and he just can't get enough of everything he encounters.

I figured we would walk a mile through the forest. After three miles, he was ready to do it all again - and he didn't walk, he ran. As I kept up a steady pace, he stopped to look at everything and roll around in the duff. Then he would pick himself up, run past me and do it again. Big hills, slippery paths, tricky tree roots - nothing stopped him and the whole time he chattered away happily, making up stories and asking a million questions. Not the same kid at all.

After seeing the hills and the condition of the trail, I decided to sit out my race today. I figured I had gotten enough exercise with him and it would be nice to sleep in for once on a Saturday. My feet hurt too. And my knees. And I had a paper cut on my thumb. And I'm sure I had other excuses too.

Having made the irrevocable decision to skip the race, I found myself at the starting line this morning at 9:00. If Spike can handle the course after all he has been through, I figured none of my excuses were valid. Ran my best race yet, with my fastest time. Fastest, not fast. After a day of rest and ibuprofen, Spike and I will head out to the Cary Soccer Park to walk next week's course. Soon, he'll be running with me.


Wednesday, December 7, 2011

Life Goes On : Another Walk In The Park

Everybody enjoys a walk in the park with their kids on a perfect autumn day but no one more so than me, taking walks that I feared would never happen again.

While Spike continues to show no interest in leaving the house, once I actually get him outside, he has a great time. While his physical therapy seems to be working well, he remains hesitant about climbing in the playground. I think that has more to do with nervousness about other kids flying around than it does with his own abilities. He justifiably remains tentative about his balance and strength. Worrying about someone suddenly running past him while he crosses a swinging bridge or pushing him aside as he gets ready to go down a slide takes the fun out of the playground. So when I get him to a park now he immediately wants to walk through the woods - which is just fine with Dad!

On Sunday, I took him to Bond Park in Cary. Aside from getting him outside, I wanted to walk a bit of the course that I will race next weekend. I knew that we wouldn't be able to walk the whole three miles but figured I would at least get a sense for the course. As it turns out, it's going to take more than three miles to tire out the new Spike! While we didn't walk the course, we did spend more than two hours walking everywhere else. Up and down hills, across the dam, through the woods, along the docks - we did it all and he left asking for more as the sun began to set. That's when I realized that Spike has once again become what we've all wanted all along - a normal kid.

Now that Spike has returned to this blissful state of normality, continuing his blog would be the self-indulgent crowing of a proud papa. Which, of course, doesn't mean I won't do that! However, I have decided to cut back on the frequency of updates so as not to bore everyone with the minutiae of the daily life of a four year old and to give myself more time for other writing.

I originally started this blog with the sole intent of updating my family on Spike's medical issues. So much was going on with him that I had little time or energy to update everyone individually with e-mails and phone calls so I figured that posting a quick update once a day was simply efficient. The blog turned into so much more. For one thing, the audience quickly expanded far beyond my family to include several hundred people scattered all around the world. These ramblings have now been viewed over 10,000 times by people who care deeply about Spike even though they might never meet him. The e-mails I receive continue to brighten every day for me. From my selfish point of view, the blog gave me a refuge from the hospital during those most stressful times. Even if I was writing while sitting next to Spike's bed in the ICU, I could escape, mentally and emotionally, while remaining present physically to handle whatever might come up. Most importantly, I felt the caring and support from everyone who followed Spike. That helped more than you can know. As I have said before, no matter how strong and independent you think you are, if you find yourself overwhelmed by a crisis and someone offers help and support - TAKE IT. Thank you all for the many ways you have helped me, sometimes by simply being out there and listening.

I will post updates at Christmas, on Spike's birthday in February and whenever he reaches major milestones in his recovery. If there are major setbacks, which there won't be, you will hear about it here.

Enough words! I will give you something far better now. A little walk through the park with Spike.

Who wouldn't want to take a walk with a normal little four year old?
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Of course, "normal" can mean just about anything at that age. A nice quiet walk in the woods, watching deer and picking up sticks can quickly devolve into an air guitar solo from Rock Star Spike!
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Once he hears that beat in his head, can you blame him for breaking out in dance?
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It's all fun and games until he threatens the paparazzi with stick. For people who crave the spotlight, rock stars can be so unreasonable when fans want a photo.
stick daddy

Only one thing to do then - tie them to a post until they clean up their act. Spike blamed his violence on the drugs. Yeah, they all do that.
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Just when you think you've rehabilitated the criminal, you find him carrying a weapon! The shadows do not lie - look at that right hand!
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Busted!
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Yes, he's a little devil and here's the proof.
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But that music in his head will just not be silenced.
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This time he locked himself to the post and claimed he lost his "arm key" so we couldn't leave the park.
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He then decided that being in the park was a vital part of his physical therapy regimen. Hard to argue with that so we stayed a little longer.
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Thank you all for walking with us through Spike's entire journey. Now that his medical adventure is over, it's time for him to walk into his future, under his own power thanks to the skilled hands of a surgeon, with the support and love that all of you have shown.
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Friday, December 2, 2011

What's That In Your Hand Spike?

Spike came to me today holding something I had not seen him carry in a long time. A book!

Yes, he actually put his iPad down, went a got a book and asked me to read to him. That's a big change for him as he just has not had the attention span for books in the past year.

A couple months ago I had gotten him some very nice books by Sara Varon. They are long stories told all in pictures. I thought he might like that better than wordy books. Anything to get books back in his life. He enjoyed them at the time but today said he wanted me to read a real book with words. I've been reading to him at bedtime but this is definitely the first time he has gotten a book on his own initiative in the middle of the day. Progress, slow but steady.

Unfortunately, Spike has not been progressing as well with his various fears. He is scared of heights, elevators, loud noises and who knows what else. These are all new or re-emerging fears since his hospitalization. of course, it is hard to associate them with his illness versus his being a four year old. In fact, as I was talking to him today about them, I explained that when I was a kid I was afraid of heights, escalators and, most of all, boats, especially sailboats! That sort of argues against it being illness related.

I told Spike that I overcame my fears by just going out and doing things to show myself there was nothing to be afraid of. I am obviously no longer afraid of sailboats but I AM afraid of the cost and time commitment required for my sailboat addiction! Not sure that's a good trade-off.

Spike asked if I was still afraid of anything. I told him I don't much like heights but the only thing I could think of that I was actually afraid of is snakes. To prove that he had been listening to me, he promptly grabbed a stuffed snake and stuck it in my face to help me get over the fear. Didn't work.

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I spent four days working in Chicago this week. It is getting harder and harder to be away from him. Guess I'll have to bring him along. He should enjoy the long elevator ride to the 41st floor and the floor to ceiling windows looking down on the noisy construction site. Er, maybe I should hold off a bit on that trip.

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Sunday, November 27, 2011

Grandma And Grandpa Come To Town

Spike got a great treat today as my parents came out from California to see him. Spike seizures had just started up again the last time they were in town so they hadn't had a chance to see him truly healthy in quite awhile.

By the time we got together, Spike had already had a full day with a long walk through the woods and some time at the playground. I thought he would be tired but he was full of energy. At the same time, he was a little hesitant, almost afraid of certain things. Going up in a glass backed elevator and walking along a balcony really seemed to scare him.

The weather was once again perfect so we decided to take the boat out. Spike held on very tightly as I led him down the long, narrow dock. He had never been on the new boat and certainly never walked on a rickety, long dock before so I worried a bit about his stability and fear. While he was certainly concerned, he was also determined to go on the boat because he knows boats are the source of most of my adventures.

Once he got settled in the cabin, he seemed comfortable but still a little uncertain of everything so I went very slowly to a nearby cove that I knew would be very still. I put the anchor down in two feet of water and suddenly Spike was excited and happy. He even asked to go outside the cabin so he could look around. Any traces of fear seemed blown away by the breeze. That made me incredibly happy because, just as I did with Emily for years, I really want to take Spike on some cool boat trips.

We really didn't want to leave as the weather and scenery were perfect but the sun sets quickly this time of year so we headed back after a great 30 minutes at anchor. Spike seemed much more confident walking back along the dock to the car (still holding my hand and wearing a life jacket of course). When we got back to my parents' hotel he again hesitated a bit at the elevator and the open balcony.

That's when it hit me. I was concerned about how his illness, medications and general coordination might be affecting his comfort level. Perhaps I should have focused more on genetics. When I was his age (and for many years as I grew up), I was absolutely terrified of heights, unsteady movement and boats. Even when I got out of college, I had a problem going up in tall buildings or flying. A big part of the reason I started sailing was to overcome these fears and it has, mostly, worked. To this day, I shake whenever I get up on a ladder to change a light bulb. So maybe Spike is actually doing better than I should expect when it comes to these things. He certainly seemed comfortable at the end of our little cruise. Even more important, he is exuberant whenever he gets outside and actually does something. It's great to see him smile and laugh at everything.

A little time afloat with grandma and grandpa was the perfect ending to the best Thanksgiving weekend I've ever had.

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