What IT looks like 2 years later

My husband and I ventured out to see his neurosurgeon again last week. It’s a two-hour drive for us, so we joke that we should move closer to the hospital to save gas.

The trip was to re-evaluate the setting on Chad’s shunt. We did, as we suspected, have to go down to the final setting. None of us are optimistic that the lower setting will help him feel better. It’s been a few days and he still feels miserable.

It’s hard to determine what the best option is at this point.

We certainly do not want to go through another surgery, especially not right before Christmas. However, I can think of no better Christmas present than my husband feeling like himself again and being able to fully enjoy our children on Christmas morning.

We also saw the neurologist and oncologist last week, who felt it necessary to begin the dreaded “quality versus quantity” speech with us. Although we have been prepared for those statements, it sounds more surreal and hurtful when coming from someone else. Maybe it’s because we’ve discussed it with looks and generalities — not often speaking the words. We don’t say them. We know those words. We think about them. But we do now say them. Out loud or to each other.

In the Spring, I showed our friends and family the MRI images that started this whole journey with IT.

I’ve wanted to show more, but it’s a little bit of a pain now. When Chad started radiation last Summer, he started receiving all imaging at a different facility than before. The software is a bit different. The images are a bit different. The whole feel is just a little bit different.

I finally put all of the images together, with similar slices, for you to view.

I will warn you that the images started in August of this year are slightly less enhanced. This is due to the subtle differences in the different MRI machines.

I will try me best to walk you through the pictures. You should be able to click the picture for a larger view.

11.13.07
The first MRI. Pretty disturbing. Pretty….yuck.

11.08.08
One year later. Still no change.

02.04.09
Still no change.

08.05.09
The tumor is still there. You’ll notice that you can’t really see much of the cloudy mass towards the middle of Chad’s brain…that’s because there is no tumor there. That’s the area Dr. Tatter was able to safely remove. It’s difficult to see how much/how little was removed because you would need to see all the “slices” to get a real handle on the situation. Just believe me when I say that removing any of IT is truly a miracle. It’s even more of a miracle that Chad is missing a good little chunk of his brain and is, relatively speaking, functioning.

11.04.09
Still there. No changes. That’s good. And it’s not so good. We want some positive change! But we will take no change versus negative change.

Alright. There you have it.

The state of IT, two years later.

And, in case you’re wondering, Chad is not feeling better from the shunt reset. At all. He has noticed absolutely no change, and he should have started feeling mildly better by now.

He is sleeping terribly, even more so than usual.
He is fatigued.
He is lethargic.
And he is just…well, I don’t even know.

It’s hard to say if he’s had a good day or a bad day when every day is the same. Every day he is miserable and hurting.

I have to get him feeling better. And right now, I think he is leaning towards surgery. I hate to push it on him; I really do. But I feel like we have to try every reasonable thing suggested to us.

Chad & I were discussing this a few days ago & his statement was that he wants a guarantee surgery will fix the current issues. Of course, I would want a guarantee too. But no one can guarantee that. No person, any way.

So we have to trust in the skilled physicians that we have been gently guided to — and pray for the best possible long-term outcome.

It’s hard to believe that two years ago, we were told that surgery was not an option and wouldn’t help.

Here we are…three (maybe four) surgeries in one year. The tumor may be “better”, but Chad is not.

Life can be so tricky sometimes.

We will return to the neurosurgeon on November 30th to discuss the surgical options; which are the only options available to us at this point.

Luckily, I am refusing to worry about it until after the Thanksgiving holiday. Until then, there will be no more talk about brains, tumors, medications or cancer. Unless I need to tell you something in the event of an emergency.

But emergencies are not allowed in this house anymore without my express permission…so don’t expect to hear anything about the aforementioned crap.

I’m looking forward to writing about some mushy feel-good family togetherness glued together by butter-laden carbs!

Happy Thanksgiving week!

Safe travels and warm hugs to you & yours.