Sunday, September 6, 2009

Explanation of the Bomb

A few folks have expressed outrage, and rightfully so, regarding how awful it would be for a hospital staff person to call us on a Friday afternoon, at the start of a long, 3-day holiday weekend, with the news that Bennett's brain tumor was actually worse than previously thought.

I've privately commented to some people and on a message board, but seeing Holli's comment this morning made me think it might be a good idea to post about it here, because I want to be sure everyone has the same info.

This was not the hospital's fault. I called them. They called me back. As a matter of fact, I doubt they would have called me on Friday at all had I not called them. We had been told they'd have final pathology in 'a week or so', and I figured rather than wait, I'll give them a buzz on Friday to see what the final report was.

See, I was just expecting final confirmation of the originally suspected grade 1 Ganglioglioma, so why not get the info and be done with it? Had I known it was actually something a lot more rare and a lot more serious with possible long-term complications, I would not have called.

I think that Cleveland Clinic actually deserves props here, not condemnation, and I know none of you would be outraged had I explained it in more detail about how the info got to me. They could have called me back and lied to me and said the pathology wasn't ready and then done what they probably intended, have the tumor presented to the review board on Tuesday and call us Tuesday night or Wednesday. They could have just not called me back at all.

They chose to honor the request of their patient's father with a return phone call. Yeah, the news sucked, but they have done what they have always done...shot straight and not left us hanging.

Just wanted to make sure I cleared the air. Besides, let's look at a positive here, it gives us 3-4 days to do some research and be armed with questions when we speak to them again about possible continued treatment plans.

Hope y'all are having a good weekend. We ain't, but you know what? We're managing, and let's not forget...Bennett has not had a seizure cluster in over a week. And that's a very good thing.


  1. Sorry you are going through another hellish holiday weekend all the same. It seems like only yesterday you were suffering through memorial day weekend.

    I saw the Christmas decorations in a store yesterday. Normally it pains me to see them so early. Yesterday I smiled because I am ready for Christmas and ready to put this horrible year behind me. And behind all of us.

    I know you are at the best hospital to be dealing with the complexity of Bennetts plan. I hope next week brings a plan and not a signpost with a picture of a carrot.

  2. So sorry I got it stirred up! I'm used to our local hospital, ya know. Sounds like a typical thing THEY would do. I was mad for you! The more I thought about it, the madder I got. I apologize for assuming they could be so tacky! And thank you for clearing the air. We all love your family and want to know you're all being treated right!!! :)

    And you're so right about being prepared for asking questions.

    And a YEAH!!!! for no seizure clusters for the week. That is wonderful!

  3. Results are a bitch, aren't they? I really wanted to see an image of Charlie's brain damage and once I did, I regretted it completely.

    I'm sincerely hoping that this tumor is a)a complete error and really he has no tumor b)something that can be dealt with easily and quickly.

    Now, I'm off to Google it.

  4. You are a pretty awesome citizen...and an even better daddy.
    Updated the church/class this morning. Some people just agreed in prayer and will wait until next Sunday to hear and pray again. But you gotta know, there are some people who have added you all ("the Lilly family") to their daily prayer list. Those are the "saints" I am amazed with.
    Love you guys!

  5. Sinead:
    Yeah it is weird how bookended the summer has become. I too will be glad to out 2009 behind us. It really has been an awful year.

    No problem...actually I'm glad you did because it prompted me to clear the air a bit better.

    Best of luck on Google. I have searched a lot of different words and word combos to find an Oligoastrocytoma in a kid. The median age for diagnosis is 42. I saw something, though can't confirm it, that in a kid it is like 1 in 700,000 kids with brain tumors would have this type. But Liz reminded me...probably good news that I haven't found case studies in kids, cause if I only found a couple and it was all bad it wouldn't serve me well in helping me get prepared to fight it.

  6. Richard:
    You were posting as I was writing my comment. Thanks for keeping up with the prayers, appreciate it. But hey next time you talk to G tell him I've learned my lesson. He can go ahead and make this all go away now. :)

  7. Well, I am glad it was at your prompting that the hospital gave you Friday news....But I tell ya, it happens so often to so many, I wasn't surprised!

    I have googled several sites and found what you did....I hope this board of experts will give you some peace of mind that this thing is manageable....Naturally, Bennett has something "rare"....Isn't that the way? Even when our kids get sick, they can't be "normal sick"!!!! I am so tired of it!!!

    Keep writing when you can...And yes, this gives you a great opportunity to be prepared with the RIGHT questions...

    And remember....Whatever our kids are dealing with, they are SO much better off dealing with it "seizure-free"!!!

    Yay Bennett!!!


  8. Ken, I don't have you resources, because I'm not knee deed in as much past information as you are, but I have been researching (not very deeply) about the kind of tumor they extracted from Bennett's head, and there are bad things, and there are good things. Please don't freak out about the survival rates, because this is a kind of tumor, that normally gets diagnosed around a person's 40s, so having it diagnosed and extracted at such a young age, must change everything across the board.

    By no means was this good news, but it might not be as bad as we think, with all the variations from the "normal" diagnosis.

    I didn't realize you had a 3 day weekend, what's the holiday for?

    Tomorrow (on what your holiday - it seems) it's my birthday, and I already know what my birthday wish is going to be! Hope it comes true. Let me know on Tuesday or Wednesday how I fared out.

    Fingers crossed, and toes too.

  9. I am at a loss for what to say at this point. But I hate being silent...when I am sitting here wishing so badly that you were not going through this. You and Jen and Bennett and Carter are in my thoughts. I'm glad you are not seeing any seizures. I hope you all are able to find some bit of happiness during what must be a terribly difficult time. Not that I could blame you if you don't.
    Anyway, I hope you get some more answers soon.


  10. Thinking of you daily.Researching myself as well.I want to second all the things Telmo said of the data I have read.Not that it helps for me to say it.Hang on to the good things happening because my heart of heart tells there is more good stuff to come.You are all doing fabulously considering what has been thrown at you.I'll put a word in with G when I am talking to Him ... I'll tell him you say uncle ..

  11. I'm with you and Sinead......ready to put this year behind us! I remember being so excited last Christmas thinking this was going to be a much easier year of chemo. Then the eye rolls started Dec. 29th. I knew it was bad, but had no idea just how bad.

    Here's hoping by this time next year we are all just looking back and wondering how we made it through these nightmares. Even if there is still "monitoring" to be done.......that is so much better than treating.

    And seizure free is awesome no matter what.

  12. I am glad that you are focusing on the positive aspect of the way the news was given to you- but my heart goes out to all of you and especially little Bennett- you all need some good news- not that being currently seizure free isn't great because it certainly is! I will keep you all in my prayers.
    Robin Hill

  13. Ken I am so sorry to read your posts today. I do want to commend you for how you are handling this ( at least online). Be strong. We are all here with you to support you!

    And a big HELL YEAH on the no seizures! Go Bennett!!


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