Thursday, March 21, 2013

Unveiling the Sith

Ever since we started down this road with Renn and Epilepsy, I couldn't help but notice the strange parallel it had to Renn's favorite movies... Star Wars. Much like the genius blockbusters (okay, maybe only three of the six were "genius"), Epilepsy has its drama, its terrifying unknowns, its harrowing escapes, its painful downfalls, and its heroic victories. And as the one year mark of Renn's diagnosis approaches (this Saturday, 3/23), we reflect on what we have learned, and we hold on tight for what is ahead.

From the beginning, we have put Renn on medication to help stop his Complex Partial Seizures. First it was Trileptal, but that made his once a week seizures turn into 7-8 a day, almost over night. Then we tried Keppra. It did absolutely nothing for him. Then came Depakote which, again, did nothing. Topamax was next, and that completely wiped our little Jedi out. He went into Kindergarten not even remembering how to read/write his OWN name. Major setback. So we put him on Lamictal, and eight weeks... Eight GLORIOUS weeks went by, without a seizure. We were elated. However, day 1 of week 9? A breakthrough seizure... and four severely broken hearts. When Lamictal went on without any change, he went on Clobazam. And with a $100 copay for a 28 day supply, we were hopeful. But, no. No change. So, Vimpat stepped up to the plate. But, like Trileptal, Renn's seizures increased and became more intense. And that was all leading up to Renn's last hospital stay, where I last updated that we were starting him on Prednisone (a steroid) to hopefully "reboot" his brain.

I am here to say, that like the other seven medications, the steroid has done nothing. And we were/are so sad.

What to do? I mean, really? NOTHING is working. Yes, there is the option of a diet change. So before you start sending me the links to that Hollywood movie, please know that we are quite aware of our options, and the doctors are too. And that might have been next, but a new plan is going into effect.

See, in Star Wars, two of Renn's favorite scenes are when Anakin unveils that the Sith Lord is actually Chancellor Palpatine, and when Luke Skywalker removes Darth Vader's mask to unveil the man who was once his father. Coincidence? Sigh... a psychologist could have a field day with that! However, much like those two scenes, we are faced with the unveiling (and exact location) of Renn's own little Sith Lord...

We officially have the results from the PET scan.

We got them on Monday, the day before Renn's birthday. Wanting to focus all our time and energy on his big day, we packed away our feelings about the news we received. But now, a few days and several emails with a couple doctors later, we are ready to share that they did indeed find an "abnormality" on the Right Temporal Lobe of Renn's brain. No, the MRI never showed it, nor did the CAT scan. And when we did the MEG, it wasn't clear enough for them to give us a giant yes or no answer.

So, how does one react to that? If you have an idea, please let us know. Because while we are elated that there is FINALLY a pin-pointed location as to where the seizures are coming from, we are also devastated that this means our little Jedi will be having brain surgery sometime very soon.

We will be heading back to UCSF for another MEG (ugh), and then once more for a surgical consult, once everything has been officially scheduled. We don't have as many answers as we would like at the moment, and that is aggravating. But, we know that this is God's plan, since we asked our family, friends, and entire church to pray for His will. But it's a difficult idea to comprehend, especially since we were just lead to believe that he was basically inoperable.

More updates to come, as always. But, as you prepare for Purple Day, please keep Renn in mind. Wear purple proudly, and tell everyone why. We will have a full report on how we celebrated! Tune in for that next week!

Thank you for your love and support, as always.


  1. Oh my dear ones. My thoughts are surrounding you as my arms wish they could. May the surgery go well, and may this be the answer. I will be wearing as much purple as I possibly can on Purple Day, and will be keeping you in my thoughts and prayers each day.

  2. Bethany, know love and support surround you all :D {{{Hugs }}}
    I'm all up on the Purple Day! ;D


  3. Prayers, prayers, prayers, and more prayers.

  4. I'll definitely be wearing my purple. I'm thinking of you guys and always praying for you too.

  5. Our prayers will continue for Renn and all of you, as well as for the doctors and caregivers to be able to heal Renn and comfort you along the way. xo

  6. Will be wearing purple. My thoughts and prayers are with you and your family. Take care.

  7. Good luck Renn! I have an idea... Hmmm...

  8. Good luck, Renn, and all the prayers I can send, Bethany! I hope this will be the long-awaited answer and that everything will turn out well.

  9. The Sorondo Family is thinking of you.