Thursday, September 20, 2012

Fork In The Road


I was taking a much-needed nap. We've had a cold for a few days so we're all cooped up feeling icky and tired. I woke up to my phone buzzing and answered it immediately when I noticed it was from Cleveland. It was Dr. Lachhwani. He hadn't talked to us since we've been home from the hospital and wanted to follow-up and see how Philippe and we are doing. As I told him the medicine has helped slightly (Philippe has had 1 seizure each week, instead of 2 or 3), he looked over the results from all the tests together to get an idea of the "big picture". 

He told me Philippe has a malformation in his right frontal lobe, which no other doctors had noticed in his previous MRI's. He said it's easy for some doctors to miss if they don't look at MRI's everyday or don't know what exactly to look for, but to him it was obvious. So here's where it gets tricky... Philippe will not out-grow seizures; he will continue to have them the rest of his life. We've tried all the "biggest guns" to fight his seizures: the Ketogetnic diet (which works for some patients to *cure* epilepsy, but after 2 years didn't work for Philippe), we've also used Phenobarbital, Keppra, and Topamax, which are some of the most successful anti-seizure medications. Basically, since each of these things haven't completely controlled Philippe's seizures, probably nothing will be able to his whole life. 

Dr. Lacchwani told me the malformation is not just one tiny spot, or even a small area in his brain, but that it's "significant". His best bet for his future is to remove the affected area through surgery. But the affected area also runs along the motor strip, and at this point Philippe's motor skills are "hard-wired"; he is equally strong of both sides of his body. If we do surgery and remove part of the right side of his brain, the left side of his body will be affected, but we're not sure how much. Since his motor skills are developed, his brain will not re-route those functions, so whatever portion of his motor function gets affected would be lost. It's possible he could lose peripheral vision on his left side, lose feeling in parts of his body on the left side, he might not be able to control his hands or use his finger tips for delicate tasks, and if he loses strength in his left leg he might be clumsy or walk with a limp. The up-side to surgery is that by removing the malformation from Philippe's brain it might reduce or eliminate his seizures. It also might help him over-come some of his developmental delays and reach milestones more quickly with less effort. The key is MIGHT. There's no way to know the out-come of surgery without actually doing it. We can keep our sweet, brave, happy little boy exactly the same: giving him medications (that dont really work) and lots of therapy and extra attention. He will most-likely continue learning at his own pace and who knows how far he will go- if he'll ever be able to "catch up" to other kids, if he'll be able to function in school, if he'll be able to talk or even grasp simple concepts. OR we can choose surgery: he might be seizure-free, or he might be worse off than he is now not only mentally but also physically.


This is our fork in the road.

What do you do when you have to choose for someone else? What do you do when every option is just as scary as the other one? How can we possibly make this decision for our baby boy?! But we don't have any other options. Now that we FINALLY have this answer, we HAVE to make a choice. If we do nothing, we're choosing to not do surgery, which is still making a choice that we might look back with regret and think "why didn't we do that", and we will always wonder what if... If we do choose surgery, part of his brain will be taken and we won't have a way to put it back. If something goes wrong, we won't be able to un-do it. Then of course, there's always the fear of him going into surgery and sometime throughout it have the Dr. come out and tell us that our little boy didn't make it. I know you shouldn't think that, but you just can't help but think the worst.

Right now we're waiting for our doctor to meet with the rest of the board of doctors where they will talk about Philippe and discuss what they think we should do. Then he will talk to us again and we'll go from there. Until then, we're crying, praying, and searching for answers. Answers about what to do, and how to find the courage and strength to actually do it. We go to work, we do our chores, and run our errands but there is not one moment that we stop thinking about this. If you see us and we look lost in space, that might be why. It is like we've hit that wall, fell back, got up and wonder how we can get through. 



Jason Mraz
"I Won't Give Up"

Hmmmm ... Hmmmm ... Hmmmm ... Hmmm ...

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?


I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am


I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us! (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up


1 comment:

  1. I am glad they at least found something that might help. It is a big scary decision, but I like this better than a "we can't do anything". We will be praying for you.

    ReplyDelete