The call.

We got the call today. At about 4:30 pm, Graden's nurse from his Neurologist's office called us to update us on the MRIs he had done Friday. 

Isn't it funny that I wanted this phone call? I thought I would appreciate not having to wait for the results, but this call... this is one I could have waited for.

The good news first... Graden's malformation is not touching his spine (yet). In fact, his spine looks good, normal, healthy even. I'm sure the nurse heard me release a slight sigh when she reported this news to me.

And, then, she said it. "However." She said what I thought I wanted to hear; I mean, I was waiting for this call, right? I knew there would be some bad news; she warned me she had both. For a split second though, I could only focus on the good news. She continued, "Graden's malformation hangs low and is more dense (I think that's the word she used. At this point, I could feel the pit in my stomach growing and the lump in throat forming.) than she (the doctor) originally thought. Okay, what the hell does that mean? (Who knows if I actually asked?)  

She continued, "When you come in for your follow-up on the 22nd," (The 22nd? So, you mean I still have to wait?) she paused, which made me feel even worse, "We, or, um, the doctor, will discuss your options." Options? I just want the damn thing to be gone... 

Well, I thought too soon, because this is exactly what she mentioned when I asked her if she could tell me any more. First, though, I asked her to explain what "hangs low" means since she said it wasn't touching his spine. It turns out there is some sort of cerebral tonsil that hangs from this type of malformation. (Here is an image.) Apparently, Graden's hangs lower than she anticipated. 

Again, what does this mean? To cut to the chase -- Graden will probably have surgery to decompress this malformation. We won't know for certain, but on the 22nd, the doctor plans to discuss these "options" with us and, most likely, will refer us to a Neurosurgeon at Riley Hospital in Indy.

Dangers? Risks? Chances? Side effects? Options? We don't know. The nurse couldn't say; although, she did say the doctor was "on the fence," because of Graden's age and few symptoms (for now), which we believe are under control at this point. The problem with this Chiari Malformation that Graden has (as ONE of his 2 defects in his brain, remember?) is that it is rare, and typically, affects adults. Although there since birth, many times it's not found until later in life. We were *lucky* to stumble across it now because of his "gray matter" (yes, I know that's a Wikipedia link, but it's easiest to understand). Still, we may have the option to wait, but so much can change (as we have learned first-hand)... and if we did wait, it's probable this surgery will still be necessary, because it is still able to "grow," which is why we did the MRIs in the first place (to check the status/size/growth). 

So, we got the call. With my boys, as many of you know, I have received a lot of these calls. Hell, I've had to MAKE a lot of these calls. It's never easy. No matter how much I prepare or worry, it's always different when I actually say, "This is Melissa" when they ask if Mrs. Hirsch or Graden's Mom is available. 

I will never be ready to get the call. 

*Note: please take a minute to click on the colored/underlined words in this post if you have questions about the medical terms involved.