Leasing an Angel
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The Breakup

11/9/2016

24 Comments

 
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.
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24 Comments
Rachel Nolan
11/11/2016 04:19:13 am

This is such amazing news!!!! What a great Christmas gift. Can't wait to meet that person he will be. If anything like the one I already know, he will be even more awesome!

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Maggie Lewis
11/11/2016 04:30:57 am

I just told Bella the good news! Her eyes lit up like Christmas morning!! She said, "Mrs. Stemle is really blessed."
I AM SO EXCITED FOR YOU ALL!!!!!

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Dave Blake
11/11/2016 04:53:48 am

I sat and cried with joy for you all after reading this!!

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Jennifer Leonard
11/11/2016 05:12:35 am

Crying tears of joy for you, Luke and your entire family.

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Matt Nolan
11/11/2016 05:40:26 am

Stephanie I know that you do not know me personally but through a mutual "friend" of ours. I hear updates from our "friend" all the time and I cannot tell you how big of a smile I have right now. You guys have gone through so much and we think about you all, all of the time. This has made my day and I am so happy to hear this GREAT news. Our continue support and prayers to you, Luke, and your family.

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Lana Green
11/11/2016 06:01:31 am

I love you and am so relieved for you that now Luke can emerge and the hope for a new day is just around the corner♥️ All the best and live to you on your next journey to Texas😇

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Patty smith
11/11/2016 06:18:28 am

One of the best post . Can't help but cry .Love you

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Joan Ooley
11/11/2016 07:19:28 am

Stephanie you are so gifted in explaining TS! Luke is such a precious child, beautiful and created by God. I am praying for a completely successful surgery. And for all Luke's family as well.
Luke is so loved by so many, may your Christmas be a blessed day for all of the family. Faithfully praying

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Karen King
11/11/2016 07:42:04 am

Great news! I'm so thrilled that the surgery will be sooner rather than later. Let's get on with this precious child's life. God placed him in the right family, strong and dedicated. Love and prayers to you!

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Mary pat boone
11/11/2016 08:38:23 am

Stephanie I know you don't really know me but the emotions that I feel for you and your family are overwhelming. I am sending you prayers love and most of all hope. Your mom met Taylor my daughters boyfriend that was a victim of ts and I consider him one of the blessings in our life and I know one day down the road some lucky family will feel the same way about Luke!

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Debbie Neal
11/11/2016 11:10:02 am

I am so very excited and happy for you all. Great, awesome and amazing news to hear! Already praying for success in every way possible. 😍

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Emily Byrd
11/11/2016 12:14:30 pm

AMEN! <3

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Fran Stubblefield
11/11/2016 12:45:38 pm

What fantastic news! Your blog postings have moved me to tears at times and this one makes me smile!
Prayers and blessings to all

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Ali
11/11/2016 01:22:10 pm

Shuffle on, shuffle on

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Shana Reed
11/11/2016 01:22:34 pm

That is awesome news Stephanie it made me cry. Your such a strong amaze person. I will continue to pray for you guys. Looking forward to the updates on how well he does.

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holly cross
11/11/2016 06:44:26 pm

Stephaine this makes my heart sing Knowing that this will help and Luke can move on into his neXT chapter of his new life.we love u very much and am soon excited for ur journey in Dec. love u kiss the boys for us.

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Pam Lumley
11/11/2016 08:19:10 pm

Oh "little-grown up girl" who I adore-I wish we could take all of these horrible tubers and leave them where we would of never known what they were. Forget breaking up-we don't want to know about them! This is great news and I know for a fact that God gave us the laser for brain surgeries! My Mother was one of the first to have tumors removed by the laser. They saved her life for a while. And some 20+ years later; they are what we look forward to as our miracles! And we actually had the doctor who helped develop the laser....God gave them the ability so they could help my Mom and your precious Luke. God's got this. Prayers, love and faith my dear. 💗

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Susan Miller
11/11/2016 08:20:00 pm

Stephanie, I was overjoyed to hear your great news. Intercessory prayer works! God is good always. I will keep Luke and all your family in my prayers. I will ask God to guide Luke's doctor and to grant Luke total abscence of the tuber and complete recovery. God bless.

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Karen Hupp
11/11/2016 08:25:23 pm

Steph my heart and prayers are with you and your precious little boy. What great news.

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Jenny Hupp
11/11/2016 08:50:08 pm

What an amazing writer you are! Your strength inspires me. I'm so glad and happy that this will be a wonderful Christmas for you and your family. Love you Stephanie and you continue to be the amazing mommy that you are!❤️

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Mary Pat Bliss
11/11/2016 09:43:27 pm

I am in awe.....of the news and your manner of communication.

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Toni young
11/12/2016 02:16:00 pm

Stephanie, Michael has kept me in the loop but this is such good news. I dont really know you but I know your Momma. You and Luke and rest of family will be in our hearts and prayers. God speed while in Texas.

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Rosie
11/12/2016 06:00:28 pm

Wow! Wow! Wow! What great news to hear! This is so exciting!

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www.topratedessayservices.com/usessaywriters-com-review link
1/13/2020 11:10:53 pm

Hello, Stephanie! You are such h an amazing person for always standing by Luke's side. I know that it wasn't easy. After all, Luke has been through a lot and I am pretty sure that there are still challenges that might come a long the way. But you have survived one of the biggest trials in life, so I am sure that the personality you have right now is the stronger version; you are more than someone you think you are that's why you need to believe on yourself too! Luke's going to be better and better!

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    Mother of two amazing little boys, one who just happens to be a TS warrior. 

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