Monday, June 1, 2009

At Last...May in Our Rear View Mirror

I knew going in, May was going to be a real bitch.


Not THAT May...the MONTH of May. I'm sure Aunt May is never, ever bitchy. Well...not any MORE anyway...

Thankfully, now, the month is over, and it is time to move into June. While May held mostly a state of Limbo for us, with some exceptions (of course), June beckons with hope, plans and momentum.

This is THE week.

The week where Jennifer, Bennett and I (with Carter hanging back with the grandparents) head up to Detroit to see Dr. Yoda. It all begins in the afternoon tomorrow, earlier than we thought actually, around 3-ish, when we depart for the Motor City.


Here is The Plan. I am keeping it basic, cause you KNOW I am gonna be doing a LOT of writing this week. There will be a ton of down time.

The Plan

Tuesday Afternoon/Evening: Arrive Detroit via automobile and check into downtown Detroit hotel.

Wednesday Morning through Thursday Morning: Admit Bennett as patient to the hospital, begin 24 hour video-monitored EEG. This EEG requires an awake parent for the entire time. Shifts will be taken to allow one of us to rest.


Open the pod bay doors please, HAL...

Thursday Morning: Bennett has a PET Scan performed. PET stands for Positron Emission Tomography and it allows physicians to measure the body's abnormal molecular cell activity to detect things like Cancer, Brain Disorders and Heart Disease. For this he is injected with a radioactive substance, knocked unconscious with medication and shoved into one of those funky tubes.

Thursday Afternoon: After Bennett is monitored to make sure there are no ill effects from the medicines and PET scan, he is released, we take him back to the hotel and HOPEFULLY get a chance to get some sleep. He will probably at this point be wide awake and his parents will be WIPED OUT.

Friday Afternoon: At around one o'clock we meet with Dr. Yoda to discuss the results of the testing. I'm guessing we hit the road at around 2:30 or 3:00 in the afternoon.


What is the purpose of the visit? What are we hoping to achieve here? I think it is very important to summarize the goal, so that it is clear in mind.


We hope to have Dr. Yoda evaluate Bennett's condition and confirm or challenge the local diagnosis of Focal Cortical Dysplasia with Symptomatic Infantile Spasms, in the hopes of determining what the best course of action is for the treatment of his condition.

It's that simple really. If he confirms the diagnosis, and with that confirmation determines that the affected brain tissue is something that can be excised, we want to know how to proceed with any additional testing that might be needed to plan a surgery and make it happen. If no additional testing is needed, then we'll figure out when and where to try and have the surgery.

Note the lack of hesitation in that last paragraph. People often tell me what a tough choice Jen and I will have to make regarding surgery. To me, it actually would be the EASIEST decision to make in all of this crazy mixed up scenario. Why? Because everything I have seen about Focal Cortical Dysplasia leads me to believe that removal of the affected tissue is the NUMBER ONE option that leads to the best possible results for Bennett.

Now...if Dr. Yoda determines that the local diagnosis is not correct, or if he finds something in Bennett's head that we have missed here, we'll deal with that when the time comes. We still have a heavy hitter medication that we have not used, but plan to start immediately following this series of evaluations, regardless of what the tests confirm or refute.

There's no need, NONE, to think about the 'What-If's' right now regarding Bennett's brain, or anyone else's for that matter.


As far as I am concerned, the diagnosis is what we think it is and it's location is where we think it is.

The Bears are who we THOUGHT they were!



Maybe I have packed up my bags and moved to the state of Denial, but I really do believe the local diagnosis. Even though we have not received the results of any genetic testing (C'MON...THREE MONTHS AND STILL NO RESULTS ARE YOU FUCKING KIDDING ME?) this is how I intend to proceed mentally.

It's the only way, quite frankly, to make it through this week.

Don't let ANYBODY fool you, this is hard.

I have a surge of energy and hope today, as I write this, but that veneer can crack at ANY time. I am going to try very hard to make sure that does not happen. As it stands now, I am going to try to germinate this feeling, grow it, toss it in my suitcase and take it with me. I am going to do my VERY BEST to be the MOST POSITIVE I CAN POSSIBLY BE in this very difficult situation. For my son, for my wife, I am going to give it everything I have.

Yesterday early evening, Bennett had an explosive set of seizures. And I mean just gut-wrenchingly tough to watch. I...reacted, you could say.

Maybe because it was the end of the weekend, and I had seen more than the usual amount of seizure clusters, maybe it was the emotional roller coaster I rode while following the blogs about Sophie's surgery, or maybe I was just tired.

But I fuggin' LOST it.

Cried, sobbed, like a baby for, I dunno, maybe 10 minutes. Kept trying to pull it in, came right back out. The kind of crying where your head really hurts afterwards. your nose is all stuffed up and you look like Rocky Balboa in the eyes, all puffy and swollen. Yo Adrian...I'm a PUSSY!!!


Freaked the shit out of Jen, I'll tell you that. Not that she hasn't seen it before, she's seen that happen to me probably 5 times previously. Carter thankfully was occupied in the other room with Beverly Hills Chihuahua, and Bennett...well, he was having seizures so I guess he missed seeing his Daddy come apart right in front of him.

BUT...gift horse. I NEEDED IT.

After it was over, I felt SO much better. Carried that into today, gonna try and keep carrying it all week. Maybe I can. This blog is certainly upbeat all things considered, so either I am fairly well adjusted right now OR you are witnessing the beginning of someone who is teetering on the brink of the chasm that is TOTAL MADNESS.

I'll keep you posted. ;)

19 comments:

  1. Keep us posted. I want you to know that I've met kids who have had surgical excision of cortical dysplasia. Fun? No. Successful? Yes.

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  2. Thanks for the words of encouragement!

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  3. Good luck on the trip! They will ask you to sign a release for Bennett to be part of a research study, which is cool because they if he matches with a group there will be additional genetic tests done with the blood sample that they take (while Bennett is out for the PET scan). I took KC in March and about a month ago they called me to ask for more info. Dr. Chugani told me that is how genetic disorders are found...by tests like these. Anyway, not like you want a genetic disorder, but sometimes it helps determine the best route to take if you have all of the cards that are being played.
    Sorry to ramble...I'll be sending positive thoughts your way.

    Karen

    www.caringbridge.org/visit/kcmahoney

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  4. Go armed with many questions my friend. Good luck.

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  5. I am glad to hear your MUCH more upbeat, ready to kick some IS ass tone to your post. You should be excited....I know I will be when our week comes. This week is big. Hoping and praying you get concrete answers and a plan you are comfortable with.

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  6. I think you men always do better when there is a "plan"....A mission....Not just meandering about...I am SO GRATEFUL that you have this opportunity....From everything I have seen on these blogs, you will be in THE best place to get THE CORRECT diagnosis....

    I am also glad you got your feelings out....My jerk "ex"? He HAS no feelings....Stood Colby up AGAIN yesterday (He actually comes HERE to visit...I don't allow him to take Colby off for visits...I am REALLY having to put a muzzle on myself so as not to blog about HIM! Look out, though, it may yet come out!!!)...

    Anyway, I would MUCH rather see someone express their emotions and know that my child was loved...I know your wife feels the same way....And we ALL need to "break" and get it out from time to time...EVEN YOU MEN!!!

    So, be safe on your trip...Keep us informed....Give Little Miss Sophie a kiss for us if you see them....

    And we will be thinking about y'all and praying for answers!!!

    Stay Strong!

    Cyndi

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  7. Stupid, hackneyed cliche but you really do feel better after a decent cry. Serious. And sometimes not necessarily "better", but more able. Like you've literally unloaded and are just a touch more capable than you were previously.

    Thanks for keeping up with the writing, Ken. Thinking of you and your family.

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  8. Good luck! I'll be thinking of you and anxiously awaiting your posts.

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  9. It's always good when you have something to look forward to. You already know you're heading in the right direction. Due Detroit. May kickin' up dust behind ya.

    Okay...so I'm just throwin' this out there for ya because we've had horrid IV sessions. But when Trevy had his PET scan...the Dr. Sleepy gas-ed Trevy to sleep and THEN did the IV stick. Injected the dye. Woke Trev back up for the 45 minutes it takes for the dye to circulate. And then gas-ed him back to sleep. It was SO FLIPPIN much easier...than the poking him 8 times to find a vein. Maybe Bennett'll be an easy stick. If not...you have a Plan B.

    My heart is with you guys this week...altho truth be told I was smitten by Bennett the first time I saw his cute lil' mug. *smile*

    Be safe...

    ...danielle

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  10. Karen:
    I'm confused about the release thing. Are we talking about the same stuff? I don't want to be a part of a research study because our insurance often denies coverage if that is a part of it. Maybe we are talking about two different things, I am aware of a new technique they have been trying lately in the scanning that is being researched there, but not sure if that is what we are actually doing.

    Sinead:
    I am packing so much heat when it comes to questions I would set off many a metal detector.

    Liz:
    Yesterday I realized I simply HAD to be an actual MAN this week. I need to explain that and will later in a blog about some plan changes that happened almost to the minute after I posted this last blog.

    Cynthia:
    As the child of a deadbeat Dad, I really sympathize with Colby with that probably more than any of the other stuff. I really wish he had you both, not just you. HOWEVER...you MORE than make up for it, which puts my mind at ease a ton.
    My problem is that I am VERY emotional, more than most dudes. I am way more of a J.D. than a Turk, if that makes any sense to you. If not, I have a TV show to recommend to you.

    Suzanne:
    Thanks, I always get tickled when you or Luke drop by. I don't know if this is a proper greeting, but have a Happy Lowemannzeit! If I don't get to check in before the Norgenfeast, give Luke a big kiss and a punch in the face for me!

    Jen:
    I will be anxiously awaiting writing them. Probably will need something to keep myself occupied during the down times anyway.

    Danielle:
    Last time he was stuck for IV they nailed it the first time and for some odd reason he has a pain tolerance like a Terminator. Barely flinches when he gets stuck with a needle nowadays. I think the ACTH treatment made him sort of just accept the needle in a way Carter never could.
    But thanks for the Plan-B. I like having those at the ready.

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  11. This is it! You made it to June! Fingers crossed for a smooth drive, stay, and most importantly, lots and lots of answers!

    You will be pleasantly surprised at how easy he is to talk to, so this is the time to get all your questions answered!

    We were completely thrown by the results while we were there that I didn't know what to ask because I was so unprepared. We went in thinking left side only..then to hear it was the right side only..and after an additional PET (FMZ) ended up being possibly both. But, you guys have an MRI with possible FCD findings which may make it much easier to pinpoint.

    Bottom line, get the absolute most out of this visit. Don't leave with unanswered questions. Or you'll find yourself contemplating late night emails to him every night. But, it very well may end up where you don't even have to...he may get all the info he needs immediately. I'm hoping for that one!

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  12. Holli:
    All true. Actually I have my questions, and I am armed up with them, but I have a lot of answers going in, like you said, so I will have MORE questions probably at the end, but hopefully answers that can be given very quickly.

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  13. Good luck, my continued prayers are with you.

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  14. Go Go Go! Strong and powerful Texas prayers are with you right now...and now.....and now......and now....you get the idea.
    Richard

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  15. Our thoughts will be with you this weekend. It sounds like it will be a long one, but I am hopeful that this will finally provide some answers and direction for you. Hang in there!!!

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  16. Hey don't worry about the release thing. Just when they ask you to sign it tell them No. KC is on medicaid so I didn't realize that the blood sample causes insurance issues. I don't think we were talking about the same thing....I just mentioned it because you mentioned you haven't gotten any genetic tests back yet. Sorry to confuse you! Good luck. I'm sure the trip will go well.

    Karen

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  17. May is now bittersweet for us. Three years ago in May, Sophie was dx with IS. Now we have a new anniversay for May. A much better anniversay...May 30, 2009...the start of counting seizure free days.

    Like Dr. Chugani always told us...Sophie would not be developing as well as she is if both sides of her brain were effected. I have a lot of hope that Bennett will be a surgical candidate. But I think he will want you to try Vigabatrin first.

    See you soon. You are most likely on the road...have a safe trip.

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  18. Daddy can crack all he wants just after mommy picks up her pieces.

    After this week things are going to change and it's not "one way or another" there are more than two ways this can go. But once you know what that way is, things will look relatively lighter and easier.

    It's always easier to deal with facts, than to deal with abstract probabilities, or "what ifs".

    Soon things will change, and there are a lot of people here, on the board, etc. that hope they'll change for the better.

    Now go be papa Ken, and tell us all that doctor Yoda said when you come back.

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  19. God Speed Lilly family. My prayers for you are the following:

    Good News
    Answers
    Peace.


    Take care and keep us posted.

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