Tuesday, August 25, 2009

On the Road Again

As I write this, I am a bundle of nervous energy. By the time you read it (it's scheduled to go live this afternoon), I'll probably be calmer, because I'll be en route to Cleveland Clinic, for this week's surgery with Bennett. It's much easier to cope when I have tasks like driving, checking in to a hotel, etc. to focus on.

To recap: Bennett is having a Temporal Lobectomy to remove a brain tumor/cortical dysplasia that has been causing him devastating seizures, resulting in a regression developmentally (cognitively speaking) to essentially that of an 8-9 month old. Goal? Remove the problem areas, rule out malignancy through pathology, stop the seizures. This surgery might allow him a chance to learn like anybody else does if it is successful in stopping the seizures, though it's success in that area will only truthfully be able to be measured over time.

Now, people have asked for specific addresses and locations. First of all, you don't need to send a thing. I appreciate it, but it is absolutely not necessary. But if you decide to, you'll have to call up the Cleveland Clinic yourself and get info on how to get your package to Bennett. I know he will be in the ICU for recovery for at least a day, maybe 2, then he gets moved, to a Pediatric floor most likely, but I do not know which. So if you plan to send anything, I am sure there is someone you can phone at Cleveland Clinic who specializes in locating patients. Patient's name is Bennett Lilly.

But remember, it isn't necessary or expected and you can always just continue to show support the way you always have, through e-mail, phone calls, Blogger, Facebook or wherever else we may communicate.

As for Jen and I, we will be spending the first couple of days in a hotel as we try to get into the RMH. Not sure about all that. Bennett, tomorrow, has an MRI, feducial marker placement, some lab work and other stuff scheduled. Thursday morning, at around 6:00 AM or so, we arrive at the surgery unit to hand him over.

Then? It's out of our hands until we get to go see him later that afternoon in recovery.

I will update as much as I can. I will walk you through it as much as I can. I know many people feel connected to this, and I will do my best to be sure you are not out of the loop. Forgive the impersonal nature of blogging instead of calling and so forth (to those with whom I have that kind of relationship). This, as it has turned out over the past six months, has been the single easiest way to update a LOT of people, and certainly the fastest.

Smoke 'em if you got 'em...it's gonna be a long, difficult week...


  1. I'm gonna go buy em'...just so I can smoke em'...for you guys.


  2. Hope you traveled safe and that the unfolding events keep you busy enough to quiet all that nervous energy.

    Keeping y'all in my thoughts and prayers!

  3. Thinking of you and sending you positive thoughts and prayers,peace and strength, for those most difficult moments.You all can and WILL do this.I think you underestimate the strength you have within.It's there.You just got to believe.Kisses to the brave little one.

  4. You and Bennett are in our thoughts.

  5. You guys are in our prayers. I know that Bennett is in good hands, and that this monster will be slayed. i need some miracles to start shining to give me some faith again. We send you our love and hugs, expecially to our little warrior Bennett. Hold tight to one another!!

  6. It is going to be a long, difficult week and I will be thinking of you all every minute of it.

  7. Hoping you all had a safe trip and are receiving all the good vibes I'm trying to send you!

  8. Thinking about you and hoping Bennetts MRI goes well today and that he enjoys something nice to eat before he starts fasting again this evening.

  9. Thinking of you all and wishing for a smooth journey, easy surgery and a fast recovery.

  10. Keeping you all in my thoughts and prayers as this surgical journey begins.

  11. Our thoughts and prayers are with you all.

  12. You all are in my heart and prayers....I wish I could be in your head right now so that I could know what to say....

    This is Bennett's time....These people work miracles every day...And your boy will be one of them....

    Love y'all...


    "The task ahead of us is never as great as the Power behind us...."

  13. I told you my wishes on the "Failed Surprise", and you know what they are, I just hope this all goes as fast and as smoothly as possible.

    And I actually was happy to read that you have a LOT of people to update, because that means you have a lot of people that care for you your family.

    It's nice to know that there are still people out there that care (whatever their reasons are).

  14. I just came across your blog and I wanted to send some positive thoughts your way for the upcoming surgery.

    My daughter has Lennox-Gastaut and she had a corpus callosotomy in 2003 so I understand where you are at right now.

    I will keep Bennett in my thoughts this week.


  15. Ken, I can only echo what everyone else is saying, so I'll just continue to hope this will finally get you and your family through this ordeal.

    Hold fast and keep strong.


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