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.
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?