Sunday, June 3, 2012

Of Cat and Scans

BBB wanted to know two things: what was wrong with him and how they got cats to scan. Explaining the cats was the easy part.
     “Carefully,” my husband, said. “The trick is you have to hold the cat just so, and then run them quickly across the scanner.”  He sighed deeply.  “It’s not easy, though. They don’t cooperate a lot of the time.”
     “Are you lying?”
     Hubby shook his head, looking affronted. “Me? Are you calling me a liar?”
     I watched BBB frown, unsure whether to believe his dad yet wanting to believe him so badly, for how cool would that be? But I could see he was also latching onto the more important but hidden message. Brain damage or no, he understands far more than we'd like.
      “Then what’s wrong with me now that you need to scan cats?”
     “If you want to know what’s wrong, then you need to talk to the big guy.” Hubby pointed to our neurologist, who stands all of five feet tall and was staring intently at his computer screen. It was a good way to pass the buck.
     “Is that true, Dr. xxx?” BBB asked.
     “Mostly. I find if you sweet talk them a little first, they’re more likely to cooperate.”
     Dr. xxx is our thirteenth neurologist; I like to think this makes him our lucky charm. He thinks it makes him all that’s left. He’s lying, of course, not just about being the only doctor left, but the cats. They don’t really scan cats at Children’s Hospital, just brains and other myriad body parts. We don’t tell our son that, though. He’s also more cooperative about tests if he thinks it’s true.
    “See this here,” he said, pointing to the computer screen. “There’s a new lesion.”
     We craned forward to peer at the screen. Our son ignored him, instead trying to pull the chair out from under the doctor with his foot. 
      “Or actually,” Dr. xxx continued, oblivious as he tapped the mouse and pulled up another image, “it’s a tiny, old one that’s grown.” He pointed at the MRI scan with his pen. “Right there.”
     This is bad news. My son’s head is riddled with brain lesions. As long as they sit and behave, as long as they act nice and quiet and don’t bleed, we can manage. And for several years now, they’ve done just that, been good little lesions. But even though my son has passed the teen years, his lesions are now rebelling.
     “It makes sense, the new seizure activity.” He shrugged. “A lesion like that could definitely cause irritation.”
     And it has, for now I’m irritated. Fourteen years have passed since my son’s first surgery. Fourteen years since the worst of the seizures, when he would wet his pants and fall to the ground. Fourteen years since they scooped out the lesion and part of his frontal lobe, leaving a burden no child should have to face.
     Our neurosurgeon had been telling us for years now that if we can only get our son through puberty (the most dangerous time for lesions) then they usually go quiet. The most precarious time was over; BBB is about to turn twenty-one in five months. We were there, we'd stumbled across the finish line, and now this had happened. The lesions have sucker-punched us. So yes, I’m irritated.
     “It’s not fair,” I whispered.
     Dr. Megerian shrugged again, leaning back in his chair and crossing him arms. “Just imagine how the cats feel.”


  1. What disappointing news to receive right before hi graduation. I'm sorry, I don't know what else to say. It's especially hard when news that's devastating to you is shrugged off by the messenger.

  2. Just found your blog. My oldest son (13) was recently diagnosed with a 1.3cm CM in the right temporal lobe. He began having multiple daily seizures, along with memory loss, personality changes, etc. We still haven't gotten very good information from the neurologist and he certainly doesn't seem very concerned, which is extremely frustrating. Our son has tried 2 anti-seizure meds now- the first one was horrible and the 2nd one is reducing the number of seizures, but he still has 3 or more each week, plus side effects of the medicine.

    I'm especially interested in your comment about puberty being a dangerous time for the lesions. Can you tell me more or elaborate on anything you've read/studied/heard about that?? I feel like I'm doing all the research myself since the dr. only gives out meds. I'm very thankful and encouraged to come across your blog.

    Thank you! ~ and congrats to your grad!

  3. Thanks, C. Our neuro is pretty good about this stuff. I think it seems like he's shrugging it off, but he actually knows our son far too well. He keeps things way low key so not to upset him, and this would have been upsetting. But, you know, we've decided to look at it as just news. Neither good nor bad in the huge scope of things. It's just, it is what it is...

  4. Hey Tiffany, SO sorry to hear what you're going through. But we can certainly relate. If you want, it's probably easier to email I'd be happy to share what I can. Hang in there...

  5. Just found your blog, and thank you so very much for sharing. It's late, I should be in bed. My neurologist lectures me about the importance of sleep. Some nights I just can't make myself go to sleep. I just need to be awake and alive for a bit longer some days.
    The mental image of your "Cat scans" will stay in my mind and make me smile for as long as my brain can hold the memory. Thank you.
    Hang in there when searching for a seizure medicine that works. It has taken more tries than I would have liked, but I think we may have found one that works at an acceptable level without trying to kill me. Not trying to kill me is a quality I appreciate in my medications. :)
    I do not have multiple leisions, just the one. I am grateful for that. It lives in the heart of all that makes me "Me". It could be removed without killing my body, but the odds of if rebooting me and leaving my family with a 55 year old woman who doesn't know them, has no memory of them, or how to walk, talk, live is unacceptable to me. So we cope with migraines, seizures, weakness on the right side of my body, clumsiness, occasional confusion, frequent memory loss and just forget about math. But then, I never really liked math anyway. It's not so bad, this life. I just have days, like today when I just cannot make myself willing close my eyes and quit the day. Rebellious moment, I suppose. But now, having read of the struggles of others, and being encouraged by your honesty and humor (and yes they DO suck), I think I'll slip into bed and fall asleep praying for children and their mommies who fight these stupid, stupid intruders that cowardly hide in the most personal of places, the brain.
    How rude. I mean, no one invited them to grow there. There should be trespassing laws about such things. Seriously. I've never been able to communicate with anyone who's life has been touched by this before. There are just some things you cannot say to your husband, your children. How can I tell them how angry I am? How frustrating it is to attempt some small activity that used to come easily, only to discover it has been vetoed by this tiny dictator that is slowly creeping like lava over my favorite things. I cannot believe I gave up swearing. Talk about bad timing. On the bright side, I have 3 cats and every time I look at them now, I will picture some poor soul trying to get them to cooperate long enough to scan them. I love it. It has been a much needed gift to me today. So, I want to give a gift to you.
    As long as I last, as long as I'm able, I will be praying for you and your son. He's the age of our youngest daughter. It will make it easier for me to keep track and remember. God keep you safe and well tonight. And thank you again for the blog.


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