Tuesday, August 4, 2009

Be Careful What You Wish For

You know the rest.

This afternoon, the phone rang, near the end of the work day. Cleveland Clinic...right there on the caller ID. Wow. They certainly aren't kidding up there. They are aggressive and they are punctual.

Jen picked up the phone before I was able to. I then went downstairs and tried to eavesdrop but had to wait until the end to get the full report.

It was the good Doctor himself, not even a lackey. Jen jotted some stuff down, asked a few questions, and eventually got off and gave me the report.

Essentially, he wanted to let us know that all parties involved in the review meeting believe Bennett is a good surgical candidate.

He is going to talk to someone up there tomorrow and begin setting up a meeting between us and the surgeon if that was the path we would decide to take with Bennett. He just needed to confirm with us that it was something we, as Bennett's parents, are comfortable with as far as making the decision.

Jen told him yes, that was the path we wanted to take and let's set up the meeting as soon as possible. Once that meeting takes place, we can schedule the surgery, which Dr. Lachhwani believes would mean we'd be in the hospital for the surgery, if everything was as it should be, around 7 days, maybe 10, something like that, total.

I remember yesterday when I heard that they had pushed Bennett's review from the 25th to today. At the time, I could not shake a very odd feeling I had about that. Why the urgency? I mean, yeah I have been told that this Infantile Spasms thing needs to be nipped in the bud, earlier the better, yadda, yadda, but this was different, for some reason. Yeah sure, it could have been the super cool folks at Cleveland Clinic doing us a solid, but something was just...I don't know...off about that to me.

Found out why.

They believe that Bennett has some kind of brain tumor.

I'll let that sink in for a minute, let you digest it. I know it took me a minute after bathing in the warm water of such great news and then having someone dump the ice on my head.

They can't say for sure that he definitely has one, they do not exactly know what type (there are many different types) if there is one, but basically there is some alarming evidence from the higher resolution MRI, the PET and EEG data all combined that suggests that in and possibly around his Cortical Dysplasia there exists some kind of tumor.

Honestly? I am not entirely sure what it means, something about how all the electrical patterns presented themselves in correlation with the Imaging and some experience they have with stuff like this (I looked it up, that's actually a fact). We didn't get a lot of info on the phone, but this was why his case was bumped up, this was what prompted the urgency. This is why they want surgery to happen sooner rather than later.

Funny thing is, after now having spent the last 1.6 hours on the net, tumors are OFTEN either mistaken as Cortical Dysplasia or are present ALONG WITH Cortical Dysplasia. That's hysterical only because in all my net searches I have done since February I never added the word TUMOR to Cortical Dysplasia, and so I never actually knew that. Tonight when I did that I got a lot of different results in my searches about how the two often go together, like chocolate and peanut butter.

Anyway...we certainly got what we were hoping for...they called us today, no waiting, no fuss, and let us know that Bennett could have surgery.

Not sure how to feel right now, hasn't quite sunk in yet. Is a tumor better or worse than a cortical dysplasia? Is this a mis-diagnosis or is it something new, previously unseen? Does it relate to the PET scan data, where Dr. Chugani wasn't sure what was going on inside the CD area or near it or whatever?

Is it bad news that he might also have a tumor in addition to the CD, or does it even matter at this point? How the fuck should I know? Why in the world are these questions that I have to ask myself ABOUT MY OWN SON? Maybe it's not a real issue for him in the long run, maybe it is. Maybe it's involved in this seizure thing, maybe it's not at all related but just another aspect of a problem we have yet to uncover.

Who knows?

So anyway...that's the news, I know everybody was on the edge of their seat, I know I was.

That's all I got right now, sorry...not much else to say about it tonight. Though it sure does re-enforce my 'Barracuda Vs. Shark' Theory, don't it?



  1. Oh my! I'm reeling from this news. I can't imagine how you must be feeling. Peace to you, my friend.

    What's the next step?

  2. Well, I was reading along with a smile on my face....


    What are all the old sayings?

    "Don't borrow trouble..."

    Don't count your chickens..."


    To find a positive, as you so often do, you point out that at least Bennett's appt. was pushed up....You are not having to wait...That is the GOOD part of this....

    And so now we will all get together and hope and pray and cross fingers and toes that this "thingie" they are seeing is only going to be the GOOD part of this...The VEHICLE that got their attention...That is causing that treatment to come SOONER!

    Keep us posted on what is next to come...


    PS: Re: your previous blog: Remember that I am an "old woman" and don't know anything about blog ettiquette! I am learning from y'all! I didn't know anything about commenting on comments!

    And also....I am an "old woman"....I can't keep up with where each of you lives and which hospitals y'all are going to!!! Am I reading too many blogs??? You young'uns bear with me!!!

  3. Well crap. I guess the surgery is good, but the added twist of a tumor is certainly unexpected.

    Hopefully this next meeting can come quickly so that you can get more info about what it could mean in their opinion. Dealing from personal experience, sometimes too much Internet research can only make things worse when you don't yet know what you are dealing with.

    I am so sorry. I know the last thing you need is more uncertainty.

    Hugs from here.

  4. there are no words to make this better or to make it go away. I guess you should be thankful they moved it up. Right now you need to put your trust in the doctors that they can handle this and know the best course of treatment. And of course we are all here with you and Jen. Hugs to you both. I am sure you are both scared. Lean on each other and you will make it through.

    I assume they had already checked him for Tuberous Sclerosis or is that one possibility?

  5. my mum had a brain tumor when she was my age. The good news about tumors is that they're a pretty basic case - you know, take out the bad stuff and leave the good stuff.

    I'm really glad to hear that he'll have surgery and it's all going to be resolved pretty soon. Thats great.

  6. Well ... what does one say to this?I certainly have been on the side you are on.Similar but different.I guess the best thing said by anyone is :We are here.The crazy,never met you,feel like we know you,love you,blogland people ... we are here to advise when needed,shut up when needed,support in anyway and also pray.Because I believe that is just as important as anything.Peace and strength for this moment and all the moments that lie ahead.YOU ALL WILL FIND YOUR WAY THROUGH THIS TIME.YOU WILL FIND YOURSELF,ONE DAY,IN A PLACE WHERE YOU SAY ... WE DID THIS SEEMINLY INSURMOUNTABLE THING AND WE FOUND OUR WAY TO THE OTHER SIDE.PROMISE.

  7. Wow. I honestly don't know how to react. I was thrilled to read the first part...the surgical candidate part. But the other...Hard to gauge how you're actually feeling, so to comment...I'm really at a loss for words.

    Just know that we (this tight IS community & blog readers) are here rooting and praying for the best possible resolution to Bennett's situation. Tumor or no tumor, I have the utmost faith that you all will make it through this and hopefully these seizures will be a bad memory.

  8. It's 3am over here, but I just had to log on to see if there was any news. Bennett isn't my kid, or family, but he is your kid, and you're an internet friend, and you've been so good at updating us, that we can't just feel like we're in this too (even if very much removed), you know what I mean.

    I think all the questions you're now presenting yourself with about the tumor, are unclear even for the doctors, and they'll only know what's what, once they get in there an take a look.

    Anyway, surgery sure is best, the faster it is done, so I hope they can schedule you in as soon as possible. I know you'll do the impossible to fit their schedule into your lives.

    Things are rolling, and the way I see it there is no turning back. Bennett if a candidate for surgery, let's have him get some surgery.

    I know I might sound cold, but sometimes that's what it has to be. No internet search, no over analyzing, no nothing, just take a leap (of faith, of hope, whatever) and let's do it.

    I really hope all goes well and fast. Better start stocking up on Xanax, it's gonna be a bumpy ride.

    But things are positive so far, the tumor of a plot twist, but the speediness of the surgery, and being considered a surgical candidate are all good things.

    And it all goes to show you that those guys are on the job, visibly are interested in the best outcome possible.

  9. What is your barracuda vs. shark theory...I missed that one somehow!

    I will be praying.

  10. Wow Ken...I got so excited to read that Bennett is a surgical candidate but as soon as I saw that they thought he may have a tumor, I kind of deflated a bit. I can only imagine what you feel like.

    I'm hoping despite the new revelation of a possible tumor, that you were able to get some much needed rest last night. I have a feeling though that last night wasn't to restful for you though.

    I'm not sure what to say that hasn't been said already. For now, I'll believe that God put that possible tumor in Bennett's little head so that he'd get the help he needs sooner rather than later.

    Hold on tight to Jen and you will all get through this together.

    Like others have said, we are all here for you. I'm not part of the whole IS community, but I have come to care about all of your children and I hope and pray for the best outcome for each of them.

  11. Everybody else said it well.

    The only thing that popped into my head was that a tumor, at least, is a THING. If they can remove that THING, then fan-freakin-tastic.

    But it's a hell of a scary word. So many of the other words you've been forced to learn over the past several months have been long, clinical items. But everyone knows that word and it creates a primal fear in us.

    As always, you and your family remain in our thoughts and prayers. May the Cleveland Clinic act swift, decisively and successfully.

  12. Surgical candidate...that is wonderful news!!! It's crazy, right...to say it's wonderful news that your son's brain is going to be operated on?!?! So many mixed emotions. And then on top of that the BUT comes in. The tumor. Nothing seems to be straightforward in this crazy IS world. NOTHING!!! You get one answer to only come up with a million more questions. I hope you get some more answers soon. I hope the tumor is nothing too serious. I hope all your upcoming appts are scheduled quickly. I have so much hope for Bennett...for you...for your family.

  13. Hope they are busy making plans for Bennett in Cleveland.

  14. @Aylwardsinead: Even if they aren't, it's a heck of a lot to process. IS, Tumor, Surgery. Considering this all revolved around a child that is so young, and little, it's all very complicated.

    This is the moment when we are in the middle of a WWI movie and tons of people have died, and we acknowledge it, but them suddenly a horse gets killed and everyone gets crushed.

    This is the moment we all realize that all the abstracts that have been talked about, aren't abstracts anymore, and a child will actually have his head open, and have a piece of it cut out.

    I didn't want to write it like that, but that's the closest we non IS commenters will ever be aware of what those parents are going through. It needs to be said with cold words, to be understood. Of course sorry to all those who are IS parents and never really wanted to think of their children like that.

    But I do have an upside. I know a friend of a friend that lost the top portion of both hemispheres of his brain, due to a very unfortunate accident, and yet, he is as "normal" (quotes because I hate the word) as can be, he lost nothing, no loss of motor control, vision, speech, memory, any kind of faculties, etc. it's as if the accident never happened.

    The human brain is still a very big mystery, and I guess it is true that we only use about 15% of it, because that guy I know lost way more than half of his, and he's fine. And in children especially, their ability to heal, can be astonishing.

  15. wow! I don't even know what to say...but just to hope and pray for the best....

    And yeah, at least the surgery gets moved up....for all we know, this could be a positive?!?! in some way....

  16. So I think it "could" be a good thing that there is a tumor there as well. From what I understand...CD is often SO hard to find with scans that surgery is elusive. But I'm thinking that Bennett's tumor was like a lighthouse beacon...leading the way to surgical intervention. And possibly seizure freedom!

    The only hitch would be if it's cancerous. Did they mention this to you??? I know Dr. Rockstar ages ago told me that Trevor either had CD or a tumor...but that the tumors tend to be benign. Which is good. Because it opens the door for surgery and not cancer. Which opens the door for seizure freedom. Which opens the whole world for our kids...


    I know you're reeling. And I need to go sleep off my exhaustion for the next week.




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