Ok... so I am a liar.
Not in a compulsive "that girl we all knew in high school, if you break up with me I am automatically pregnant" kind of way. But in more of a "I know that your husband is cheating on you, but I don't know if I should just mind my business because you may already really know but not want to talk about it" kind of way. Or like a "your ten year old son keeps dropping subtle questions about Santa, but you plan on squeezing out one more year of innocence if possible because I don't want my baby to grow up" kind of way.
If it wouldn't make things more complicated in a few weeks, I wouldn't even tell you this part of the story.
I would keep the lie to myself.
Like a protective parent dodging the questions of Santa, I was going to gamble the odds of omission and just keep the whole story from you. But, selfishly, I don't want to have to have this talk with you and crush your spirits so close to the holidays and while we are in the trenches of Houston.
Just a quick recap before we get to the part I left out..
We went to Houston for preop monitoring to get control of the seizures that have ran our lives for years.
Everything pointed to the tuber in the right parietal lobe.
Everything lined up.
Everything made sense.
And then we came home.
We were tired, and scared, and Luke was regressing by the day.
We made some big med changes.
Some things got better with the change in meds. Mostly, Luke could sit and stand and hold his head up. He started to laugh and smile and kiss and hug. We could see him again through the fog.
Some terrible things happened too with the med changes. Mostly, Luke no longer sleeps. Oh, I am sorry. I don't want to be dramatic. He has slept through the night 4 times since we have been back. And I don't mean "like" four times... I mean literally four full nights of sleep in 2 months. And it's not like he is up to get a drink of water and a hug. Dude is up for normally 3-6 hours at a time. There is not an under eye serum on the planet that fixes that.
And something seemingly indifferent happened too when we changed the meds. Luke's seizures shifted from his left side being more tense to his right side. The seizures still look the same for the most part, but they have shifted sides.
So here is the fine print buried in the footnotes...
The shift is not good news. It is confusing news. It is curious news. It is concerning news.
Why? Why does this complicate the plan? It seemed so clear and clean and simple. We had an answer. It was glaringly obvious, right?
Well. We did. And then this tiny shift happened and it adds an asterisks to the whole "clear and simple" plan.
The way your seizures look on the outside, communicates to doctors what is going on the inside of your brain. Seizures normally begin on one side and show outwardly on the opposite side. If you told a neurologist, that didn't know Luke, that he was seizing on his right side, they would say that the seizures were probably starting with a tuber that was on the left side of his brain..
There is the problem.
Luke's tuber. The one. The "clear" problem is on his right side.
The doctors in Houston feel it is most likely just some disruption with the med changes, but it could mean something has changed.
This is TSC we are talking about here. There are no rules with this disease. Things don't have to make sense. It's the Wild, Wild West. We leave nothing to assumption, especially before brain surgery.
So we will go down for another EEG reading a week before the surgery on Dec. 7 to confirm and affirm and hope and pray that the data that we collected a few weeks ago is still valid and that all the activity is still coming from the bad boy in the right parietal lobe. We hope he is still the culprit.
If the EEG shows us the seizures are still coming from the right parietal tuber (I feel like I need to name him) yet again, the plan is still on.
Decemeber 13- Tuber out. Monitor. Check-up. Home hopefully around Dec. 21.
If there is more going on, or something has changed from where his seizures are beginning, it is a completely different ballgame. I have like 15 scenarios that they gave me, but I am going to just stop there. One day at a time sister...
Even though I am an admitted liar, the last post is true.
The doctors are shocked and excited about the clear data they collected from Luke's study. They feel very certain that the EEG in December will support what we found a few weeks ago. They are very confident that no matter what we find in a few weeks, the tuber in the right parietal lobe needs to come out. They are making a list and checking it twice. No complaints here. Of all the times to be overly thorough, before your child's second brain surgery, is as good of time as any.
So you don't have to share the post like crazy. We can continue to be happy and excited and relieved there is 'finally an answer that is going to fix Luke', but we know there is more to it.
There is always more to it when it comes to this stupid disease. There is always more to it when it comes to life. We all have our lies, our fine print that we hide to protect those who are rooting for us. To give a break to those who are hungry for something positive and hopeful and good.
So don't tell them yet. We will just keep this to ourselves. Some lies are good for everyone. I can't wait to lie to Sam and bring a little magic into his life.
I can't wait for him to come down the stairs, his eyes like saucers and mouth hanging open. I can't wait to tell him that reindeer fly and elves make toys and Santa is watching... all those lies I have never got to tell Luke. I will show him the half eaten cookies. We will hang up our stockings. We will put carrots and oatmeal in the front yard on Christmas Eve.
I will smile and cry and try my hardest to soak every bit of beauty from these moments because I know they are fleeting. I will suck down my seventh cup of coffee and pretend like I haven't been up all night, anything I can do to protect the innocence as long as I can from the fine print of life.
Because some lies are worth it.
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.