Thursday, August 20, 2009

So What Now?

I was reading a blog post the other day about Blog Etiquette, or Rules of Good Blogging and some such, and one of the rules was to keep it simple, to keep it brief. Suggested that the longer your posts are the less people are likely to read them. That's a rule I violate BIG time all the time. If there is one thing I know about myself and writing...I am one wordy motherfucker.

So just warning you in advance. This one is really long. It's a commitment. And I'll understand if you just wanna be friends.

Some people have been asking me about Bennett, more specifically, how did things go this past Tuesday and what's the plan with him? Figure...what the hell, now is as good a time as any for a summary of where we are today. Gets people up to speed, and gets people ready for what's to come.

A few weeks back we had Bennett undergo some additional testing at Cleveland Clinic, to see if it would be possible to stop his seizures with surgery. Oftentimes, if you can find a focus, that place where a seizure 'starts', in the brain, and take that out, you can possibly cure the patient from having any seizures at all, or at least dramatically reduce the quantity and severity of those seizures.

I've gone over those tests and the results before in much greater detail, but the summary was that the team that reviewed all the evidence on Bennett's condition believed that not only was surgery an option, it was urgently recommended, because some of the evidence has suggested a brain tumor in addition to or instead of the previously diagnosed Cortical Dysplasia.

Although it is important to also point out that some of the evidence did not support this section of his brain as THE FOCAL POINT, so there is a wrinkle there. Nothing in these situations is so A to B to C.

Surgery is scheduled for August 27th, and we went up this past Tuesday to meet the surgeon, go over what was going down, get some info. Essentially Bennett really did not need to be there, but the surgeon, Dr. Bingaman, wanted to see him while he talked to us.

We got the full explanation about why he thinks this is more likely a tumor than just Cortical Dysplasia (though he isn't ruling out CD completely, might be a Combo Pack), what the procedure would be like, what the risks were, etc. Just so you know, Bennett will be undergoing what is called a Temporal Lobectomy. They use a question mark shaped incision, probably in this location or close.

Actually, much of what Dr. Bingaman told us you can see here, in a video on Resective Surgery from The Epilepsy Therapy Project. It's very informative, though generalized.

Pretty nifty, this whole Internet thing, ain't it? The things you can so easily learn about. Wanna learn more? Of course you do...because you, like me, might be wondering...but what are the risks to that cute little guy? I mean, this is BRAIN SURGERY fer cryin' out loud!

You ask? I provide.

...and don't forget Part II. It's no The Empire Strikes Back, but it's a decent follow-up.

Essentially, what you just learned in these videos? I learned in a very warm, under-air-conditioned office this past Tuesday.

Now, that's the fact stuff.

How do I feel?

I'm scared. I'm nervous. I'm anxious. It is not an easy thing to picture your child's brain getting sucked out of his head. It is not an easy thing to contemplate any percent chance, no matter how small, of your child dying because of something you decided on his behalf. It is not an easy thing to think about him having a stroke, or of causing a new complication in his condition because of a failed surgery that you agreed to.

I'm nervous about this whole tumor angle. If it is something along the lines of a Dysembryoplastic Neuroepithelial Tumor, we're good. Those don't come back, they aren't malignant, and they are often a tumor type that can be found along with Cortical Dysplasia. If it's something else...well, then it's something else. That's freaky.

But overall, when it comes to the surgery itself, I have to consider Bennett to be one of the 'lucky' ones. I know plenty of parents who watch their sons and daughters have seizures every day too who are hoping to, one day, be in a position where they are waiting for a surgical date to arrive. So I do understand it from that perspective. While terrifying, it is also certainly comforting to at least have this as an option.

Funny thing is that I am most nervous not about the procedure, but what lies just beyond the procedure. How will I handle those days? What will Bennett be like? Will he be OK? Will he be like the Bennett I know today? Will there be any issues with him being able to walk, or see, or do the things he does right now?

Will he be in a lot of pain? How will I know? Will his seizures actually stop? Will he be able to learn? Will he be able to get back what he's lost? Because as of today? Words are pretty much gone. Even getting him to mimic now is next to impossible. Will that change after the surgery?

He doesn't talk, but he is engaging and sociable now. He laughs a lot. He smiles a lot. What if after the surgery he doesn't do those things anymore? What if something goes wrong and he doesn't express those emotions anymore? What if his personality changes into something I don't recognize?

But one of my greatest fears? And I am almost embarrassed to admit this, because I find it to be extremely selfish on my part...What if, after he wakes up, he doesn't remember me? What is he doesn't remember that I am his Dad?

It's crazy, after six months I have found a way to live my life with my son's seizures being a part of my daily existence. Somehow, and I can't for the life of me explain it, in these past six months, while I haven't accepted them, while I still hate them, while they still make me angry and tearful and upset, somehow I have learned to navigate each day to the point where they have become a part of my routine. I EXPECT THEM. I KNOW THEM. I AM FAMILIAR WITH THEM.

But now? What lies ahead are a bunch of unknowns, and what is not known is generally feared. If his seizures go away after the surgery, that will be awesome. Really awesome. It is certainly what I am hoping for and what any parent would hope for. It is certainly the goal of the surgery...stop the seizures. Give the boy a chance.

But the truth is, the journey isn't really over it? Is it ever? Because there are so many variables we can't really know about when it comes to his brain. And that's the thing that has me tripped up. I longed for this, I wanted this, I really looked forward to having a shot at a surgical solution to make the seizures stop. And now that we have that? It's beyond frightening because I never thought about what happens after that.

Now it's all I can think about.

I'll get by, somehow. As each day comes I get more and more nervous, but I'll figure out a way through it. I always have before, I will again. I'll write a lot I'm sure. Some of it may be stupid, filler garbage, some of it might have a kernel of insight in it. I don't know.

I have this wishful image in my head sometimes, this it I see Bennett, grown up, laying beside some woman, some new Mrs. Lilly. They're holding each other, laughing, talking, and the new Mrs. Lilly reaches up and runs her finger along the length of the scar that has now become so visible since Bennett has lost most of his hair like his Dad did. He touches her hand and she pulls it back because she thinks her action has bothered him.

She tells him she's sorry. He tells her not to be, he just wanted to hold her hand. This scar, he explains, it's just a part of who I am. In fact, to me it will always be a gift...a reminder to treasure the life I've had. It will always represent, to me, an opportunity that eventually allowed me to be right here, right now, in this place...with you.

It's a good wish. It's a good dream. Maybe it can come true. But the only way I'll ever know it is to get through the next seven days.



  1. The unknown becomes Known in less than a week. Good luck, Ken. We'll be thinking about you and Bennett.

  2. Your vision of the future made me cry. Thinking of you and your family.

  3. Sending all of you the peace and strength to navigate through the next seven days and beyond.You know,2 1/2 years ago we were plunged into the deep darkness of the unknown and that journey and how we have found our way through each and every moment,lies in the wisdom passed on to me by a Fellow in the NICU:As I passed her at the end of a very long,emotional day,dragging myself to the elevator, she asked me if I was alright.I paused,leaned against the wall and said"I just don't know how we got here or how we find our way out"And she said,"I have no doubt ... Zoey will show you the way."And she has.And all the other families that I have met and watch stagger through the unimaginable have done much of the same because of the courage,tenacity and resiliency of their children.Bennett WILL show you the way.He will lead.You will follow and on many days he will be the one who lifts you up and see's you to the next moment.I have no doubt that the future that you envision for your beautiful boy will come to fruition.With faith,hope and Bennett'll all be unstoppable.That much I am certain of.

  4. That is a good dream. Hold onto that as you enter this next phase with Bennett. Regardless of anything that happens, he is damn lucky to have you in his corner. Someday he WILL know that.


  5. That is a lovely dream for the future.

    It is insane the way that surgery that seemed like "the solution" for so long suddenly becomes a reality and you can no longer ignore all the risks and unknowns. But in just one week you will be in the recovery part, and then at least some of those risks will be behind you.

    I wish our consult was at Cleveland so we could be there to give y'all a hug in person. I will be thinking of you.

  6. My vision of Sophie's scar...that she will someday notice it and ask me why she has it. That will be a good day.

    Something I wasn't prepared completely out of it Sophie was the first few days after surgery. Her eyes were blank. I was prepared for the physical weakness but I wasn't prepared for the emptiness in her eyes. But, as you know, she came around. That is what people notice most now...her eyes. The eye contact she makes and the way she will study an object. You can tell just by looking at her eyes, how much more awake and alert she is now. So be prepared.

  7. The visions and dreams for the future are what will get you through. There is no reason to think they won't be a reality.

  8. Dude before you marry the kid and make him bald, please let him have plenty of anonymous sex while he is young and has a full head of hair. lol

    In the times of the Discoveries, which were mainly undertake by the Portuguese and the Spanish, they would go around a new continent or island, and draw an approximated shape for a map, but seeing as they knew nothing of what lied beyond the shore, they would write in the middle of the new place: "Here Be Monsters" and that's pretty much where your "What ifs" are all at the moment, they are in unexplored territory and therefore, feared territory.

    And worry not, if Bennett develops some kind of amnesia, after the surgery, it's most likely that he'll get his memory back. And even if he doesn't, he'll have plenty of time to make new memories, and he sure isn't just going to forget his Dad! Actually studies day that you are harder to forget because you're a redhead. So point for Daddy.

    Your anxiety is showing like nothing else, you wrote "What If" more times in this post than in all of the blog, but it's to be expected, the closer we get to the actual date the more we worry. It's totally natural, in an unnatural way, because there is nothing natural about brain surgery.

    Worry not about blog etiquette, it's impossible to talk about all this stuff in a small post. And I for one am very guilty of being bad at bad etiquette, just look at all my long comments.

    Keep the news coming.

  9. I cannot say that I know how you feel, because with Daniel, we cannot do the surgery. But keep dreaming those dreams for your little guy, and I am sure that they will come true.

    You guys are in our prayers.

  10. I pray for that moment sometime in the days after the surgery when you know he knows you. You'll cry, but boy will THAT be a joyful moment for you to have forever. Thanks for the information.
    Will be here, wishing I was there.

  11. That's powerful stuff there, Ken. Made me tear up at the end. Our thoughts and prayers are with you all.

  12. Some months ago (coming into May) I told you the darkest time is just before the dawn. This is it. And the dawn won't happen in the recovery room. For us it happened at home in the comfort of our living room. This next part is the hardest.

    I don't think I spoke of this before but one of the most difficult moments for me was handing Emma over awake to a complete stranger. I was used to being there through sedation so I would hand her off asleep and get her back asleep. That was so hard. They gave her a preop called Versid that was supposed to make her drowsy. They use it in the sedation protocol for MRI also but it is usually the drug of last resort. Unfortunately it has the opposite effect on Emma and we had to hand her off in a state of hyperactivity.

    I sent you a picture of the recovery so you know we got her back with a mis-shapen skull. I was not prepared for that and I remind you of that because its good to know that what they look like in the recovery room is not what they look like two weeks later. Temporal lobe surgery has the highest success rate and I hope Bennett has the most successful surgery ever.

    There is nothing easy about this next stage. Cling onto what hope you have and the love you have for your family and be OK with whatever reaction you have. Love yourself regardless of your feelings.

    Watching Emma still asleep in the recovery room was one of the darkest hours of my life. But when she woke up and I tickled her feet and everything could still move, it was the most profound moment of my life. More than birth. I knew we could make it through the recovery even though she was not herself at all.

  13. Oh and that scar will be a total chick magnet when the time is right. Hmm who wants to think that way about a two year old?

  14. Ironic, isn't it, that your (Bennett's) potential saving grace will possibly be the most terrifying moment of your life? Why these kids have to go through such dramatic measures to secure their future is beyond me. And, we, as parents, pray for brain surgery? Never thought I'd see that day. But, still, I pray for it every single day.

    And, for you, it's a reality. And I can't imagine the emotions that reality evokes.

    Wishing you, Jen, and Bennett all the peace, comfort, and strength to get through these next couple of weeks.

  15. My feed for your blog isn't good. I've been getting caught up.

    Charlie had to have a shunt placed at about four months of age. Shunts are necessary. They are life saving. You will DIE without one. Still, I agonized over it--I felt like I had a decision to make. I felt like i was choosing to hurt mychild.

    I know nothing about this particular procedure, but Charlie's had two big surgeries and the head was easier than the abdomen. There are no muscles in the head and that's a good. I think fewer nerve endings too. Don't know if that makes you feel better about it at all.

    Before Charlie went in for surgery i took a bunch of pictures of him smiling because I was afraid that someting would happen to him and he'd never be able to smile again. I needn't have worried. He was the same smiley kid after surgery. The only thing that EVER took away Charlie's surgery was the seizures. I would go to the ends of the earth to get rids of those suckers. It's like pulling back a mask and letting your child's true self appear.

  16. Suzanne:
    Thanks. Had a dream last night about Luke and You. Got to visit your house. It was awesome in my head. Lots of great toys.

    Thanks, I hope it can be a reality.

    That’s a really great message, and a lot of truth to it. Bennett will be the one teaching me who to be when I am with him, not the other way around.

    I just have to be sure I don’t lose these blogs!

    You stay frosty this coming week. I’ll be thinking of you guys as much as you will be of us. And yeah, it would be great if you guys were at Cleveland.

    I appreciate the heads up. I don’t know if I am prepared, but it certainly helps with you and Sinead and others telling me what to expect. It will be hard. Meeting Sophie when I did was very fortuitous for me…taught me a lot.

    Hope so!

    I had already started a blog entry called ‘Here Be Monsters’, that’s ironic. Just haven’t finished it yet. But I was aware of the map thing with the Explorers. I don’t worry much about Blog Etiquette. I write long posts…that’s who I am. I know people skim, I know some people like the journey of words I try to create. But that’s true of everybody who reads, don’t you think?

    But you know how it feels to be scared for your child, even if it isn’t the same situation. Thanks for the prayers.

    Yeah, getting to that singular moment where I see his personality re-emerge is what I need to hang on for.

    Thanks dude.

    I know it is going to get darker before it gets lighter and yeah, I’m scared. One thing they allow here…I can stay with Bennett until they put him under, they allow that. I was floored, but relieved. I appreciate the photos and will probably take a lot and post a lot of my own. Hell, I’m so weird that if they allowed me to actually be in the OR I would shoot photos there too. And I hope the scar is a chick magnet. I was a good looking young man, before years and bad living took their toll, I’m hoping my boys both have that good fortune because frankly it helps get through some aspects of life. Especially early on, high school and junk. I just want to be sure Bennett GOES to high school and has a shot at what the other kids have a shot at.

    It is ironic. And how’s this for an even weirder thing? I hope that you feel as terrified and sad and fearful as I do some day, waiting as a surgery date approaches. It’s so weird, ain’t it? But yeah…it is what we want when meds fail so badly.


    There actually is a muscle in the head they have to cut, it wraps around the skull. Ever watch someone chew? Watch their forehead. That’s a muscle movement. What type of head surgery did Charlie have? Was it such that they did not have to cut that muscle? And did you mean to say that ‘The only thing that took away Charlie’s seizures was the surgery’?
    How’s your cat doing? Peeing regularly again? :)

  17. I am totally not staying cool. But doing a little retail therapy is keeping me busy. I've been on a search for the most comfortable outfits I can find for Maddie that button up for the trip. I figure she deserves to be as comfy as I can keep her for this crap. And it's keeping my brain focused elsewhere.

    Hope you are cooler and calmer than I am. Then again, your week is on a whole 'nother level......

    I'll be thinking of you and hoping for updates.

  18. Wow...I just get blown away over and over by your precious words....Thank you for sharing so openly....

    Just think....It won't be TOO many days that you will be in Elaine's shoes....Won't it be just AMAZING?

    I do understand what you mean about being USED TO THE SEIZURES now....They have been your focus for so many months now...You've adjusted...They are truly a part of your lives....But y'all are getting ready to have a NEW normal once again!!! And THIS adjustment will be met with joy....

    Hang tough....You and Jen will be AMAZING because BENNETT will be amazing!!!


  19. wow Ken. First off, I love your writing. I had to say that. I always enjoy reading your posts about your family. In your words, I can hear the pain and anxiety, but also the endless love that you have for them all.

    I can't believe you are only 3 short days away from this surgery. For me, the time has flown by, but that's probably because I'm not directly connected to you and am able to take my mind elsewhere to deal with other matters. Just want to let you know that you all are in my prayers this week.

    I love the dream that you have for Bennett.

    I won't bother saying to try and keep your mind on other things, cuz I'm pretty sure that that is damn near impossible for you so I'll end this with...

    Keep your chin up Ken. Even if Bennett changes a bit after surgery, he'll still be your Bennett. And honestly, I don't think he can forget that your his daddy...You're a hell of a father, who can forget that?? {hugs}

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  21. I'm still reading along, trying to catch up. I can relate to your feelings in this post of being more worried about after the surgery than the actual operation. When my dad had brain tumor resection surgery, I felt similarly, I supposed because I knew I would play much more of a role in the aftermath than I did just pacing in the waiting room while some stranger cut into my dad's brain.

    Your vision of your son in the future gave me chills.


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