Listen buddy. We gave it a try. We really did. We tried to make it work, but you just don't seem to want our help. We've tried therapy. We've tried Meds. We've tried prayer and begging and CBD oil and diets. You just won't change.
And you know, maybe it's not that you won't...maybe you can't. Maybe you are just wired to cause havoc and pain and confusion and delay (been watching too much Thomas the Train). I just can't try to figure you out anymore. But now I am relieved to know I no longer have to try.
It's over, tuber. You've got to go.You hid behind the chaos for long enough, but you have finally shown yourself and now we all know. We know it wasn't our fault. We know it wasn't because we should have gone up on Vimpat or down on Afitinor. We know it wasn't because we quit the diet or we didn't have get enough early intervention. It wasn't the Depatoke, or Sabril, or Onfi, or white count, or infection, or stress.
It wasn't me.
It was you.
And it is time for you to go.
We went to Houston looking for tuber-S, more than one, that needed to be removed to end the seizures we have been fighting. We had told ourselves it would probably be messy and multiple. We accepted complicated as the norm a long time ago.
But that,my friend, is not the theme of this chapter. I mean, other than the fact this is brain surgery and not guaranteed and likely to have to be repeated in the future, other than that, the culprit is clear. The answer came easy-ish...for once.
When we were in the EMU at Texas Children's Hospital a few weeks ago the EEG collected 17 seizures in 46 hours. The doctors had told us that Luke was a show off and an overachiever. This was one of those weird times in our story when we got excited for seizures to happen because that meant that we were compiling every bit of data possible for the doctors. The goal for the stay was to capture about 4-5 seizures. We got 17, and we even were discharged a day early. Every seizure, except for one, came, very clearly, from the right parietal lobe. As the doctor relayed me that 16, not 17, came clearly from one spot, her excitement and explanation seemed to muffle as my mind started to zoom in to that one lone seizure she hadn't spoken for yet.
"And the 17th? Where did that seizure come from?" I asked waiting to be introduced to the supporting antagonist in this season of my weird Lifetime movie life.
"Oh, we think it came from the same tuber, it just wasn't as clear on the EEG because he was sleeping when it started."
"DANG GIRL! Why'd you do that to me?"
Dang girl is not normally something I yell at a neurologist who is briefing me on the pre-op brain surgery plan for my three year old, but I felt justified. She had me full on dangling in the dark place for 15-20 solid seconds.
So all the seizures they captured on the EEG came from the bad apple, that jerk tuber in my baby boy's brain.
At that point I was ready to pack the car, but I know that this wasn't the only data that they collected or the only data needed for a clear and effective plan
So Dr. Coorg went on to explain....
Results from ALL the other tests (MRI, PET, CT, Functional MRI) came back with results pointing to the same tuber, right parietal, right parietal, right parietal. Every test.
Even more, Dr. Curry seemed much less/ not really concerned about the location of the tuber relative to the location of Luke's left hand motor track. Weighing the risk of possible paralysis seems no longer a decision we will have to make.
And then, to just really send the Lifetime movie into the over the top gag me adorableness, they are pretty sure that they can get the whole tuber out with the laser.
Yeah. For real. No open brain craniotomoy. Little hole. Ablate the tuber. Put a band-aid on the hole. Come home.
So, that is 100% NOT the timeline and that is ridiculously oversimplified, but come on. This lowers the risk of infection and scar issue and swelling. This is the procedure they prefer to be done on every patient if possible. Many times, the location and size of the tuber makes that impossible. But not in our case. That bad boy is right there, Teed up, ready to get gone.
We leave for Houston December 7 and the surgery is scheduled for December 13. It is on.
I have been obsessing and dreaming about everything being better when you are finally gone.
And soon you finally will.
And I know that everything won't be perfect. There are scars left behind to heal. There is lost time to make up for. There is a person in there to cultivate and grow without being knocked down with every step forward.
This tuber. This thing. This growth in Luke's brain. We have been waiting and searching and trying for so long to control it and soon it will be out. Everything that Luke can do or can't do or won't do orbits constantly around these seizures.
It is the tubers fault. It is the seizures fault. These have been the mantras we have lived by for years.
They are going to be gone soon. We are going to be left with one tired, yet resilient brain. We are going to be left with Luke. I can't wait to meet him. I can't wait to get to work and take even a few baby steps forward in a row without a giant leap backwards.
I know it won't be perfect. I know it will be hard. But just like any healthy relationship, doing hard work with people fighting with you, not against you, is a reward on its own without even considering the outcome. Meds will work differently. Therapy will work differently. School, relationships, routines, toys, food, sleep... all these things will work differently once the tuber is out. We know Luke. We have seen his heart, but we are getting ready to meet him all over again without a seizure corrupting his development.
You know, I used to hate the movie The Breakup. I didn't get it. Why is it ever good to have a comedy end with two people walking away from each other letting go. Tuber, I get it now. I get the movie. This IS a happy ending, us parting ways. You have taken enough of our time and energy and money and tears. I wish I could say that we will both be better off. But honestly, I really don't care about you. We will be better and stronger and healthier and happier. You? You can go back to H-E-Double Hockey sticks, where you came from. You can join the floating carbon matter in space. I really don't care, just get out of my baby and get out of our lives.
With the build up to surgery, it is scary to think what happens after... but that is where cliches are a beautiful thing. One day at a time sister. So right now, it is time to turn on Kelly Clarkson/ Alanis Morissette, throw up with bird, get mad, get strong, and tell that tuber to shuffle on down the road. We are moving on. We are taking back our life.
Mother of two amazing little boys, one who just happens to be a TS warrior.