Monday, September 7, 2009

So...Let's Re-Cap

It's Monday, a holiday though, so it sort of feels like a Sunday. Though, not really. I mean, yeah, it sort of does, but not like Sundays will start to feel like a week from now. Then the NFL season will be in full swing and the house will hear the sounds of football all day long on Sunday.

That's in sharp contrast to today, which is eerily quiet. The kids and Jen are at her Mom's house. I elected not to go. Frankly, I had some things I needed to get caught up on, and wanted to have some time to myself. Something I have not had in weeks really.

Though it's that I finished the things I stayed behind to actually do, I find myself feeling more isolated than usual. I chalk that up to the fact that I haven't been away from Bennett for quite a while, we got the pathology report on his brain tumor Friday and we are still a little shell-shocked by it, and it's very cloudy and rainy here.

But I wanted to take a minute and look at where we are with Bennett today.

The kid has been having daily seizures since February 12th, 2009. He was diagnosed with Cortical Dysplasia based on an MRI he had on March 5th here at the local hospital, so there was no real 'rush' to get in there and go forward with a surgery. Medications aplenty were tried and failed, a second opinion was sought and a third soon after that.

The second opinion was that of Dr. Chugani, who actually said himself that the malformation labeled Cortical Dysplasia seemed odd to him. He recommended that wherever we landed we have plenty of testing done, and he suggested that surgery would be our best option regardless of what it was in there, since by the time we saw him we had already tried and failed enough AED's to suggest that Bennett had epilepsy that was 'medically refractory' or 'intractable' not sure which term is actually the 'proper' one or if they are interchangeable, but essentially meaning drugs are not working to stop the seizures.

As soon as the Cleveland Clinic got Bennett, they did THEIR tests, and came to a different conclusion. Their people thought his MRI and EEG and PET tests all pointed more in the direction of tumor than CD, and not only was surgery recommended, it was scheduled with lightning speed.

If you follow this blog, you already know most of that. Maybe not summarized so quickly, but you know the score. When the tumor was excised on Thursday, August 27th, the preliminary pathology suggested a Grade 1 Ganglioglioma. We ALL breathed a sigh of relief. That's not something that tends to grow back and is very rarely an issue.

The final pathology revealed something else. A Grade 2 Oligoastrocytoma. Now what the fuck is that, you ask? It's basically a tumor potpourri, containing a mixture of tumor cells, but with at least 20% of them being defined as Astrocytoma. Grade 2 tumors are more likely to return, and when they do return they generally do so rather pissed off and typically return with a higher Grade. The higher the Grade, the worse it is, in case you didn't know that already. Grade 4, the worst kind, is obviously the most deadly.

What's super weird is that the Oligoastrocytoma is not a typical tumor found in a child. The median age of diagnosis? 42 years. That means someone MY age is most likely to have this kind of tumor, not a kid. I have yet to find any cases online of any kids that have had Stage 2 Oligoastrocytoma. I saw one stat that could not confirm, saying something like 1 in 700,000 kids with brain tumors would have it. I wish I knew how to calculate that percentage. But translation? SUPER RARE IN KIDS.

That could be a great thing, that could be an awful thing, who knows?

So what happens now? Unknown. A review board, tomorrow, will meet and go over the pathology and all the data pre-surgery, surgery and post-surgery, combine that with their collective experience with Oligoastrocytomas and start figuring out what the next steps are going to be, if any.

The next steps might be do nothing, schedule a new MRI in 3 months, see what happens. The next steps might be chemotherapy as a safety precaution to make sure all the tumor cells are gone, thus making it less likely for the tumor to return more aggressively. Unless something extreme is going down in Bennett's head, I doubt there will be any radiation treatments, not at his age.

And so we, his parents, wait for answers.

But that's only one part of The Bennett Equation. See, a symptom of his brain tumor was epilepsy, in the form of Infantile Spasms, and that's something else. It appears...note APPEARS...that the surgery was successful in stopping the seizures and that, indeed, the tumor was that elusive focal point that we never could entirely pinpoint with testing done from outside the skull.

The last set of clusters I witnessed was the Thursday morning right before his surgery. It was a monster set, nearly 20 minutes. Then off he was whisked to the OR for pre-surgery stuff. Later that night, after the surgery, at around 11:00 PM, he had a cluster for around 20 minutes. Jen was there for those, not me. Now, he had not received his seizure meds that night, but I kept what? They weren't working BEFORE the surgery, why would they do anything now?

The doctors reminded us to expect post-surgery seizures, but I thought they would present differently. Not necessarily, actually, I later am told. They gave him some IV Dilantin anyway, and the following night at around the exact same time he had a cluster for 4 minutes (again, Jen was there, not me). I am counting that as his last seizure day.

Even though there was a 'hiccup' on the EEG, a single one, on Sunday night, I am not counting that, because even the Epi wasn't sure if it qualified. And hell, Bennett has startle-awoken before. Hell, I DO THAT. Sometimes it's scary in a dream to fall off a cliff and I awake with a jolt. And I'll bet my brainwaves spike up a little too.

To be on the safe side, the doctors decided two things on the medicine side. Increase his Lamictal by 1/3, and not to start the weaning of Vigabatrin for 6 weeks. Both of these decisions bug the shit out of me. BUT...I didn't argue. I didn't want him on Vigabatrin anymore because of the vision loss issues and I didn't want to increase the Lamictal because it makes him hyper as all get out.

So...let's put the Cancer part aside for a second and talk about how Bennett is doing after his first week home. And yes, you heard me, I called it Cancer. MOST people would not. See, brain tumors that start inside the brain rarely spread to other parts of the body other than maybe the spinal cord, and technically do not fit the 'definition' of Cancer.

Gonna have to call Bullshit on that. If it is an un-natural growth and has ANY amount of malignant cells in it and can grow back AND KILL YOU then I'm gonna call it Cancer. Hope you don't mind.

But forget about the C-word. Let's talk about this past week based solely on Bennett and his recovery from the surgery. Sure, the surgery is a major thing, and there are lots of things to consider in doing his first week post-surgery 'eval', and the first thing on that list is to make sure one notes that he hasn't had a seizure in over a week. So how has the surgery and the lack of seizure activity changed things for him?

Physically, no issues at all really. There is apparently no weakness on either side of his body, he is able to walk, run and climb now with the same gusto he had before the surgery. His stitches aren't even out and he jumps, runs and plays. Aside from two times when he hurled, his stomach is also getting under control and he is now eating just like he did before. I can even see some weight coming back.

He developed no post-surgical infections, and his incision appears to be healing VERY nicely. It's ugly, makes his head look like a baseball, but it looks really good for a surgical wound, and his stitches will come out tomorrow. He does not appear to be in any pain at all anymore, though we still give him some Tylenol and Ibuprofen just to be sure he stays that way, we just give it a lot less than we did early on.

Emotionally, he has had some good days and bad days. Early on, he was really having a hard time with it. I have come to believe that the Lamictal dose increase is the cause of the aggressive hyperactivity, not anything related to the surgery or surgical recovery. From what I know of Lamictal, it's some potent shit and his dose was increased by 1/3. No fuckin' wonder he was up til 4 AM the second night.

He still has these little things he does that concern me, like the biting into a sofa, the sudden fluttering/rubbing of his hands, slapping at his diaper and pulling at his clothes. This all has to be how his mind is reacting to probably feeling like Jen says she does when she takes Sudafed. VERY jittery and nervous, with some real swings in mood. I'm hoping we do not have to keep him on this dose long, but I won't know that for 4-5 more weeks.

Though I may fight to pull back sooner anyway. I am not convinced yet that he absolutely needed the dose increase. I'm not entirely convinced that he even needed the Dilantin in the hospital. It's just possible that once the tumor was removed, he had some post-surgical seizures that just had to pop out, the way they always have guys like Freddy or Jason, when you think they're dead at the end of the movie, jump back and and take a swing with an axe and make you piss your pants.

But like I said, I'm no doctor, and I do not want to do anything that I might regret. If I pulled back his dose on my own and he suddenly started having a breakthrough seizure, I'd learn to be harder on myself than I already am, that you can be sure of. And that...not something I need to be any more proficient at moving forward.

So he's having this nervous, quirky 'thing' and he goes to bed REALLY late, close to 11 or 12 right now cause he is so wired. But, his smiles are back too, as is his giggling and laughing, babbling, making sounds, saying 'DaDa', 'MaMa' and the like, though again, I think those are just sounds he says, I do not think he is at a point where he knows that 'DaDa' is me and 'MaMa' is Jen.

I've noticed most of his old behaviors have returned. Most of what he knew before he knows again. A couple of things that he used to do, like roll a ball, he doesn't know yet, but he was losing those abilities even before the surgery. I'm sure with time all that stuff will be re-learned.

But I've also noticed, even in just a few short days, some things he is doing that he just never did before. To parents with 'normal' kids, these things might sound trivial, but for Bennett these things are HUGE. He is reaching out for something that he wants, rather than standing there crying and making us figure it out. He saw some Cheerios on the counter and was reaching up towards them to try and get them.

That's a big deal. It's foundational for communication. Vary basic, but very necessary.

He's playing with toys more consistently and for longer periods of time. He still can't figure all of them out, but he is engaging them with his HANDS, not just with his mouth. See, that's huge too, because he may be moving out of the 8-9 month old oral mentality into a new stage where hands become a key factor in teaching kids how to process stimuli. I'm very interested to see what happens when he can get back into some therapies, see how he reacts and if he can exceed some of the limitations he had before.

He's actually watching television. This is probably the biggest thing. He never did before. If it was on, he might glance at it, recognize it as something in the room making sound, but he never engaged in it. EVER. At all. Now, he watches it for extended periods of time.

And I look at him while he is looking at the screen. He isn't just staring at it, his eyes are moving around the screen, processing what he sees, and his facial expressions change, based on what he sees. Something is clicking inside his head in a way that has never clicked before.

To me this is the biggest thing because there are great tools for teaching that you can show him on the TV. Signing Time and other DVD's and educational programs will be critical to his development. Not to mention that learning is repetition, and if he will engage in those same programs or tools again and again, I think he has a much better shot of learning things more quickly.

So as far as getting rid of the seizures, knock on wood, that very act itself has made a difference. They'll be baby steps I know, but in addition to the worry and the fear over every little tic and twitch, there's going to be the celebration for every little new step taken from me. That's the way I will be able to handle it and keep going, especially in the face of the C-word and what what wicked things may come at us next week and beyond.

I'll keep you posted. It's what I do.



  1. I know what you mean about the developmental milestones. I can remember the day my son started pointing, the day he finally was able to stack three blocks, and the first time he mimicked the television. I am so excited for that part of your lives and hope the development continues even through the scary unknowns. Thank you for sharing your life with us.

  2. So glad he is doing so well!

    Keep it up!

    And Ken - you are going great. And so is Jen. You all are.

    I hope you guys get a well deserved break before you start any kind of next steps.

  3. I haven't commented in awhile but have followed every update and am so glad to hear that he's starting to get back to his old self and beyond. That is beyond awesome. I am so sorry that you have the tumor issue to worry about still, like you didn't have enough to worry about. Hoping tomorrow brings some optimistic ideas and that he keeps making such fantastic progress. Go Bennett!

  4. Oh Ken, I'm so glad to hear that Bennett is doing so well!!

    When I read that he was starting to 'watch' tv, I immediately thought of the channel Noggin. Not sure if you have that station or not, it's on the digital tier here in NY, but their slogan is "It's like preschool on tv." I have no doubt that if you have this channel, Bennett will benefit from it. Every show teaches kids different fundamentals.

    Any idea when he'll be able to resume his therapies??

  5. Ken...Thanks so much for this great post...If I had been through what you and Jen have just been through, I could only pray that I could be where you are with all of this...You are actually able to think straight and write about it!!!

    I know y'all are celebrating Bennett's new achievements...What WONDERFUL news!!! The reaching for things and the watching TV? They are BIGGIES! And this is just the beginning....

    An aside re: Lamictal...I know folks that have gotten GREAT results with it...It actually did not help Colby's seizures...In fact, that is the drug that made him so toxic, and he was on a tiny dose! Our neuro had never seen anything like it...It just didn't suit Colby's system...But I do remember as he was beginning to become toxic, those last few days before we hit the ER were CRAZY! He LITERALLY slept maybe four hours in two days! So, I think you are right...The Lamictal is probably jacking him up...But hopefully his body will adjust to the increase...And before you know it, it will be "weaning time"!!!

    Let us hear what the next plan of action is when you can....I think about y'all all the time...Hang tough...Keep doing just like you are doing!


  6. When you posted what kind of Cancer (I'm with you, more on that later) Bennett had, I researched a little, and though I'm sure I didn't do as good a job as you did, I too didn't find one single case of Oligoastrocytoma in a child, much less such a young one. So you got something rare in that kid of yours.

    As for the C Word: Yes, if it's an abnormal growth of mutated cells in any part of your body, malignant or benign, it's cancer. If it was an abnormal growth, that would be something else, but cells don't just mutate out of nowhere.

    Is the review board going to tell you anything tomorrow? I ask because you end saying: "(...) what what wicked things may come at us next week and beyond". So will you know something tomorrow, or just next week? Or are you (like me) thinking today is Sunday?

    I don't think the incision is ugly, but then I think most things are cute in kids (except snot).

    My niece bit her wood bed, as soon as she developed teeth, and up to the age of 3. We're not sure if she liked the feeling, the paint, or just liked to file her teeth to bite us.

    Good that he's remembering things he stopped doing before surgery. GREAT that he's doing new things, and we have to remember so little time has elapsed.

    I've worked with kids of all ages all my professional live, and I have to say that sometimes I get home frustrated at some of them, because I taught them something 10 different ways, and they just didn't get it, so when they do, I feel like the Miracle Worker, and like they are the smartest little things on the planet, and they aren't even my kids. And these are supposed "normal development kids" yet it takes them over one week to distinguish "vertical" from "horizontal".

    So he watches TV already? And you want to show him DVDs? Dude the way kids are these days, he'll be working the DVD Player in no time flat, and you'll wish he never found the bloody thing.

    Man another long comment, but you made a long post too, so we're even (this time).

    It's 4:17am, and I am now 33 years 3 hours and 13 minutes old, and like I promised I didn't forget to make my birthday wish (which I can't say what it was, or else it will not happen). I just wish it comes true.

  7. Onwards and upwards Ken. These are the amazing times. The times when everything is big. There are no small improvements in children. Always when a baby does something, anything new we parents get excited and get a lump in our throats and try not to cry or laugh too loud or spoil the moment. But what you are seeing now is unusual - lots of new little things are happening at once. And its incredible. I know cause we went through it with Emma minus the verbal improvements and it was at least one thing new every single day. We went ahead and scheduled therapy the week after surgery but insisted that all therapists come to our house to begin with. We also scheduled an assessment with a developmental pediatrician for a month after surgery to build a new plan for Emma. I highly recommend that. They brain wants to learn - throw everything you have at it.

  8. The rain here yesterday was non-stop too. You said you felt more isolated than normal when alone yesterday. I think that is totally normal when processing this kind of news. I have found myself to feel isolated for alot of our journey with Maddie, just because at times I've felt no one else could understand what we are going through (at least not the people we usually spend time with). Spending time with my family members who "get it" as well as connecting with other people online (like you) helps me feel less alone in the daily battles. I also have been trying to spend more time with "normal" people, even if they have no idea what our life is like. It keeps me busy and takes my mind off some of the less desirable thoughts that are so often

    And all the stuff Bennett is already doing? Wow. Pointing, exploring with his hands, and the TV awesome. I agree with Sinead, definitely resume therapy soon. It sounds like his little brain is working hard to catch up. That is so great to hear.

    And I'm totally with you on calling a spade a spade. Calling it cancer just means giving it it's due respect (or hatred).

    Sending love and prayers,

  9. What great dveleopmental news! So happy for everyone!

  10. Great sum up. Again, your ability to juggle the good, the bad, and the ugly would make Clint Eastwood proud.

  11. This was a great post, Ken. I read so much optimism in your writing! You are right, all present concerns aside for the moment, there are so many improvements to focus on! Those are truly great steps he's taking.

    I seriously wouldn't doubt that it could very well be the Lamictal causing the aggression and odd behaviors. Austin's been a different kid lately too, and I'm totally pointing the finger at his Felbatol. In his case, there's just no other explanation. And I've seen him radidly change over and over because of meds. They can have major effects on their little bodies.

    Thanks for the summary and keep up the positives!

  12. Yay for Bennett!! That is so awesome that he is showing signs of development. Reaching for what he wants is a big step!! Your heart must be so filled with pride : )
    And I am sorry to hear about the rest. I could not help myself...I tried to search for a case of a toddler with the type of cancer that Bennett has and could not find one. Not that I thought I could find something that you couldn't but had to look anyway. Sometimes it's easier to find that stuff on groups like this. Is there a yahoo group that you could join? Even if you just join to ask the question...has anyone seen this? Anyway, just a thought.
    And I totally hear ya on the med issue. It sucks. KC's neuro is trying to convince me right now to put KC on Clonazabam to help him sleep, even though it makes him crazy! I just can't bring myself to do it. He has seizures through the night that keep him awake, but at this point I'm not willing to sacrifice all of the progress we have made with KC's behavior. At some point I may have to, and that's the part that really bites. We will see.
    I hope today brings you some answers about what is going to happen now.



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