Friday, October 16, 2009

The Skinny on This Week's Cleveland Clinic Visit

So, this week we went up to Cleveland Clinic for follow ups with Neurology and Surgery and our first visit with an Oncologist. The follow-ups went well, as far as how Bennett is doing when it comes to recovering from a brain surgery and managing his seizures. While we can not know with absolute certainty if he has seizures of any kind (absence style or some other erratic brain activity) or not until we have an EEG follow-up, outwardly he doesn't appear to be having them.

There has been the occasional staring that I freak out about, but I can't make a mountain out of a molehill until EEG can support the construction.

Medication plan is remaining the same, keeping the Lamictal where it is while continuing the wean from Vigabatrin. He'll be off of the Vigabatrin probably within a few weeks I think. That's cool. Pretty routine follow-up on the Epilepsy side of the Bennett medical triangle. When it comes to the recovery from the surgery itself, that part was, also as expected, fairly routine. The surgeon said the incision looked good, and it does, and basically just asked us some stuff about how he was doing.

One of the things of note from the Surgery follow-up was regarding Bennett's lack and loss of pre-existing language skills. The surgeon said it could be 6 months or even a year before he is able to get to a point where language and cognitive skills would be easier for him. I don't fully understand that, but again, I'm going to be patient, as much as I can be, for that. No need to push for a 'why', especially when nobody really knows.

Another question for Neurology and Surgery is for them to put their heads together to try and determine what is causing some of Bennett's aggressive behavior. Bottom line is that I do not think there will be an answer there. His aggression isn't even as bad as it was, so it is less of a concern to me than language and other higher learning aspects of Bennett's future. But they plan to talk about it and get back to us. Hell, I know of 'typical' kids who are aggressive. We'll see.

Besides, this week Bennett has spent two 'test days'...essentially half days in the same Day Care he was in before the seizures. He did well both times. Next week we'll try two full days. Then go from there. But no incidents of biting other kids or hitting other kids, and he is interacting with them even though most of the kids in the 'class' are cognitively ahead of Bennett. But he played and had fun and that's promising certainly.

Which serves to remind me that, when it comes to knowing what Bennett's cognitive abilities or limitations will be, the whole process is gonna take some time. I know it, you know it, and we're dealing with that part of it as best we can. And that, frankly, is the easy part of this whole thing in my opinion.

Though I will say this. It isn't until you get him around other kids his age that you see just how far behind he really is. And the sad thing is, his birthday is coming up, next month. At the age of 2 he knows less and can say less than at the age of 1. That stings. move on. You figure out a way to fight through it.

The big question for us up there this trip was on the Oncology side. The Oncology office waiting area happened to have a VSR-4 Riddell Helmet from the Cleveland Browns in it, with a bunch of sigs. I took pics because it was interesting and also it was great facemask reference for one of my projects.

Here's the deal. Dr. Oncologist says there is a 30-40% chance that his tumor could return in the next 2-3 years. In order to be able to catch it if it does, we have to have an MRI every three months. The first of these is scheduled in the first week of December. Dr. O also says if it comes back it typically comes back in the same region, and that if it comes back the first reaction is surgical, not chemical.

Go back in, take it out again.

Lather. Rinse. Repeat.

Maybe. The chances are 30-40%. Now at first I have to admit, I was staggered by this number. Maybe I still am. But on the other hand, you could look at it this way...there is a 60-70% chance that it will NOT return in the next 2-3 years. Apparently, after that 2-3 year mark, chances decrease, I THINK. On this point, clarification I did not get. Only time will tell.

The things on are To Do list over the next few months to a year (unless something drastically changes) are basically thus:

-Keep a watchful eye on his head, see if his tumor comes back. MRI every 3 months until further notice.
-Continue to keep an eye out for seizures, have follow-up EEG's.
-Continue weaning him off of Vigabatrin, stay on an AED for 2 years.
-Get him into some therapies, as many as is allowed, and try to get him to learn. See what he CAN learn.
-Get him interacting in 'typical' and 'special needs' circumstances. He is, in fact, being reviewed for Autism in November to see if he is on that spectrum. If he is, he may go to a private Day Care academy for kids with developmental delay.
-Try to have patience with him when he essentially can't understand a thing you say or tell you what he wants or needs.
-Try to keep this family together during these rather pressured times. My wife and I have lots of unity, but we also have a lot of difficulty.
-And for me, try to get some help on the Psycho side before I completely lose any marbles I have left.

Now see? When you put it like that it sounds downright easy, don't it?

Check this out. Maybe the coolest thing I have ever seen. On this trip I was sick of the parking fees at the place we normally park our car so I tried one of the hospital lots. This was next to the elevators on the 6th floor. Is that freaking GENIUS or what?

A little card you can take with you so you don't forget what floor you parked your car on. I dunno...I just think a little thing like that, an assist for people who clearly are gonna have a LOT on their mind, is one of the reasons why the Cleveland Clinic gets high marks from me.

Oh yeah...the doctors aren't bad either.


  1. Sounds like you are working to a sensible plan. Those kind of numbers are not nice to hear. Somehow I think the numbers for IS are worse than that though. Its not like anyone wants to have to choose between two horrible conditions though. Its important to have faith in your team. It sounds like they all connect with you well.

  2. I like the plan......everything seems more achievable if you put it in a list with a box next to each that you can check off as you go. I am sorry the things on the list aren't easier.

    I hope having Bennett back in daycare helps spur on some learning. I have always wondered if Maddie would be ahead of where she is if she had ever really been given the opportunity to interact with and learn from other kids.

    I guess those odds aren't super comforting but you can't change that. But like we've talked about before, stats are interesting with rare cancers. Did y'all discuss it's rarity? I am curious if it is more common in kids than you were able to see. Or do the stats come from Oligoastrocytoma in general, as it occurs in all age groups?

    I am always thinking about y'all. I hope improvement comes soon on all fronts. Especially hope you find what you need to feel better.


  3. You have so much on your plate -- my thoughts and sympathies are with you. Your little boy is beautiful -- he's been through so much in his very short life. He has lots of time! I know that you probably hear the opposite, but I've been in the world of special needs kids for a long, long time, and YOU HAVE TIME. But enough of my blathering. I do a little work, as well, in the healthcare world as an improvement advisor. I'm going to pass on your note/photo about the parking reminder. That's fantastic. It's the small things, sometimes...

  4. So glad to hear that things are status quo for now...And it sounds like Bennett is doing exactly as they had projected....And this is some wonderful news!!...Like you, I TRY to focus on the "positive" percentages....if I can, anyway...But it can be so hard....

    I am very impressed with everything you are telling us about C.C....It makes things a bit easier if there is that good relationship there...Y'all seem to have found an excellent medical "home" for Bennett's follow-ups....

    And, as Elizabeth just said...Bennett has plenty of time....I know it doesn't seem that way right now...But he is so very young, and that is on his side! Colby's brain damage was all said and done pretty much at birth....There was not alot that could be done, except for supplemental therapies (that may or may not have really helped)...But with Bennett, it is entirely different...The things (the seizures and the tumor) keeping him from progressing normally are not threatening him now...And with his age, he will now, slowly but surely, begin to compensate...I just feel SO confident about his future!!!

    Hang in there and keep doing just like you are doing....You and Jen are fantastic parents....Bennett could not have asked for more caring and capable advocates....He is extremely blessed....


  5. Good to hear much of the info. I am a bit surprised about the docs having to get back to you on the aggression thing. I sure thought they would say "Oh yes, we'd like you to work with so and so..." I thought they would have an idea there. I love percentages below 50. They tend to put my mind at more ease...I hope that was so for you as well.
    You want to know something funny? I'm teaching a sunday school class tomorrow. I guess that's kind of close to preaching. I couldn't help but think of you when I was sort of drafted into it.

  6. I'm about the little things too. And the parking tickets are an awesome idea!

    Even when you leave knowing some questions have no answers...I always feel better having voiced them anyway. And having a list...a plan...a something to focus on.

    Bennett looks great! He sure is a cute kid! And that's no small compliment when you have kids as cute as mine! ;)



  7. Glad to hear that after all was said and done, that all was well with Bennett. I admit to looking closely at the pics of him and looking for his incision site and am happy that you can barely even see it!

    As a mom with a daughter who was delayed in learning, and I'm talking a 4 year old with skills of a 1 1/2-2 yr old, I'll tell you something. Once Bennett starts on his therapies, OT, Speech, PT, and whatever else that he ends up with, he will start taking off and you'll be looking back a year from now and be amazed at how far he has come. Marissa couldn't read, write her name, didn't talk except the basic words all kids learn, she didn't even RUN for crying out loud at 4 years old. After one year of OT and speech, she was a completely different child. I still ask myself why we ever got her speech because now she never shuts up...she even talks in her sleep!!!

  8. At 2 years (when Austin started therapy) he was about 6-9 moths developmentally, depending on the skill. Intense therapy started. Progress was slow at times, faster at others, but with perseverance he's making it. A special preschool/day care would be great for him.

  9. I'm glad there were no major surprises during the visit. From the way you described it, the follow up seems pretty cut and dry. With a logical plan. I doubt the emotional side of it is as clear cut, but that will probably get easier with time. Blah, blah, that sounds cliche I know, but in our situations, day by day is the only way to handle the emotions.

    By the way, I couldn't see the incision from the photo either. I was even re-thinking which side was operated on!

  10. Sinead:
    Yeah and I do not know how the IS and the tumor are linked really. Does it mean if the tumor returns the IS returns, or will a different seizure type return? But yeah, I like the CC people.

    We did discuss the rarity, and the surgeon said since 1996 he had operated on 10 people under the age of 12 who had it. That's amazing. However, he also said this, which I am taking with a grain of salt and yet also being hopeful about. Of those 10, none have had it return. The Oncologist gave the stats, which I think she was basing solely on study of the tissue itself. Not related to age.

    I loved the parking reminder, it was maybe the smartest thing I had ever seen in a hospital environment, next to hand sanitizer in every hall and room.

    You certainly have a lot of confidence. I don't yet, but am willing to give him the benefit of the doubt and be as patient as I can be. What choice is there, really? Maybe things turn around, maybe they don't, but we'll see. I'm doing my best to keep an open mind and stay positive.

    How did the Sunday School thing go? Remember, it's not the same as being a minister, you have experience TEACHING. I want to see you give sermons and shit.

    Thanks for the compliment. You do have super cute kids, almost as cute as mine, but that's OK. ;P

    I like hearing stories like that, it's very hopeful.

    Ditto. And yeah, that might be a great pre-school for B, more intense learning environment.

    You don't click on the photos do you? In the small photos I can't really see the incision, but when you enlarge it to proper size you can. I think it's still very visible. People stare. Fuck 'em. They can stare all they want.

  11. I've got so much to say on this post. Keep in mind, I'm not a doctor, just a really agressive reader/researcher when it comes to my kid's brain.

    So far as I can tell, the brain begins storing information at birth and is pretty agressive about it for the first three years. IF you cut off one of those areas then his brain has to create a whole new place to store the information. He's essentially lost his old stores so he has to begin again AND create new connections for them as well. I would assume that this is why it take so long to regain skills that fall into the categories of "cognition." I'd be on the look out for understanding cause and effect which is huge, and basic reasoning--like figuring out how to use a toy.

    With regards to the autism testing, I should warn you that any child with develeopmental delay may show up on the spectrum depending on the type of testing. Brain injury (I'm not sure if Bennett falls into this category, but bear with me) has many of the same symptoms as autism. A basic checklist includes questions such as "does your child point to an item of interest?" "Does your child follow your pointed finger?" Well, Charlie's physical disabilities prevent him from doing this, but he's probably not autistic. I'm not saying don't get the testing--if it gets you a service that you're interested in, then I say Pile on the Diagnoses! but be aware that to some degree a false positive is possible.

    I think you've got the right idea with the brain tumor attitude. Not much else you can do on that front. Think positive and focus on the things you can control.

    You sound good today--nothing like a plan to help focus your energies.

    and can I just mention how well the Saints did yesterday?????!!!!!

  12. I like the stat you mention in your comment about the doctor saying none of the kids have had their tumor return...that's terrific. I hope and pray Bennett follows that trend.

  13. LOL, no I don't click on the photos! :)

    Did I mention I have dial up access? I'm fortunate that the photos even load the small size sometimes! :)

  14. So mostly everything we had talked about before!

    So not good news. And mostly good news.

  15. "So not good news. And mostly good news."

    Correction of a tired mind:

    So not BAD news. And mostly GOOD news.


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