It was hard to wake up this morning... I'm not going to lie. Yes, there are MANY exciting things happening today (a promotion for me, preparations for our Purple Day celebration, anniversary of my book release, and playing baseball with the boys). But the thing that is looming, just ever hanging over my head like a mean, dark cloud, is the fact that one year ago today... Renn's diagnosis came.
Normally, a family would celebrate one year anniversaries together. But I think, if we can be completely honest, we don't even want to think about it.
One year ago today, Renn's life changed forever... and so did our family's. We all learned how to hold onto each other and how to truly rely on God for answers (even if they were the ones we didn't want to hear). We are still together, forever in these trenches, not giving up the battle. Our faith has been tested, our blood pressures have gone through the roof, bits and pieces of our extended family have come back into our lives while many have abandoned us, we've been shown grace, kindness, and love by complete strangers, we've cried, we've cheered... We've been through it all. However, we've also seen Renn grow in wisdom (maybe a bit too much!), and been able to experience a stronger bond with him. I wouldn't trade that for much of anything.
To say it hasn't been a roller coaster would be like saying Renn doesn't like Star Wars. But, we push forward!
And maybe, just maybe, one year FROM today... Renn will be seizure free.
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!
We love you, and are so VERY proud of you!! May the Force be with you today and for always. You are our treasure, our gift from God, and our true hero. We can't wait to watch you grow into the man you are meant to become...
Yes, we are at home, and our little, BRAVE Jedi is back to his usual tricks. We started the steroid last night, and will be taking his third dose in about fifteen minutes. So far, so good! No signs of a seizure this morning (he had three on the way home yesterday, making a total of five 7-10+ minute seizures for the day), and he's full of energy. Dr. Amazing warned us that he would be extremely hyper, irritable, hungry all the time, and he would hardly sleep over the next two-three weeks. But, if we get that and no seizures? I'm all for it.
Thank you for your support while Renn was in the hospital. The love was ridiculous, and I am STILL trying to comment on all the blogs that gave Renn the encouragement he needed. If you want to check what all my creative friends did for him, please head on over to Susanna Hill's blog, HERE. I'm warning you... Be prepared to cry, laugh, and have your socks knocked off!
Renn wanted to say a little something, too:
Also, we have a request... The people at the Empire State Building DENIED the request to turn the beautiful building purple for Purple Day on March 26th. Can you believe it? So, a petition has been started (and both the Hubs and I signed it). We are asking that every single one of you follow the link (click HERE) and sign the petition. It would be HUGE for Epilepsy, if we could do this!!
Thank you, again, to all our intergalactic friends... What a difference you make.
It's one of our favorite quotes by Master Yoda, and it is one that just so happens to be the most relevant quote for our family right now. And that has never been more true, until today.
Our little Jedi slept through the night like a champ, and we started our day with the usual... Pancakes, bacon, Eggs, and 10,000 medical staff members coming in and asking the same questions (UCSF is, after all, a University with many, many students!). Soon, Renn was elbow deep in addition, subtraction, short vowels, and journaling about his day. We worked until lunchtime, virtually getting his week's worth of independent study done all at once, and then Dr. Amazing came in.
We discussed how Renn's seizures are just... strange. He isn't getting any better, and because we are noticing some slight behavioral changes, she told me of her new plan. To be honest, I wasn't at all prepared for what she was about to say, although I knew that there wasn't a medication left that could help our kiddo. So she explained to me that she would like to put Renn on steroids, with the idea that they might help to "Reboot" his brain. From what she's/we've seen, there's nothing showing up that gives a clear "HEY!! IT'S ME! I'M THE REASON HE'S HAVING SEIZURES!!" insight. Instead, she's/we're seeing lots of activity on the right side of the brain, but many times the activity is on both sides. She's thinking that it could be as simple as putting jumper cables on a battery in a car, and in two weeks, ZAP! Renn is seizure free.
The side effects of the steroids are what have me pacing the floor...
1. He will become wildly hyperactive. To use her words, "Totally bonkers."
2. He will be super irritable.
3. He won't sleep much.
4. Quick to be angry.
5. Major appetite, resulting in a lot of weight gain.
Now, why on earth would we agree to such a thing? Here's why...
1. We will only be doing this for two weeks, with an additional two-week taper time.
2. In that two weeks, all seizures could stop. FOREVER.
3. If seizures stop, then there will be no surgery or medications.
4. If the seizures don't stop, then this was only a two-week change.
5. "Do or do not... there is no try." We've committed to stopping at nothing to help Renn.
So, we are clearly both terrified and elated at the idea that this really could be it. There are so many good reports about going this route, so we feel quite positive about it. But the downsides are pretty harsh, so it's a difficult situation to process.
Dr. Amazing also informed me that she will be sticking strictly to In-Patient care, starting July 1st. Yep. She'll no longer be Renn's #1 doctor. However, she is leaving us in the hands of another doctor (his name TBD after I've talked with him more) whom I met a little bit ago. He is VERY nice, and seems to know more than she did! Come to find out, he's not just a Neurologist... He's also THE Pediatric NeuroSURGEON, here. So, I felt comfortable immediately.
Lots of changes... We are also taking Renn off of Clobazam, as it did nothing for him, either. Essentially, if the steroids work, Renn will be medication free in one month. I can't even fathom.
Tomorrow he goes in for his PET Scan (for more information on what that is, and why it is used, please click HERE). It sounds strange to say, but we are hoping/praying for an ABNORMAL result. If we get that, we will know exactly where to go and what to do with our sweet Jedi's brain. Surgery will most likely be in the works, but it will be an obvious solution. If the results are completely normal (and I will use the new doctor's words, here), "Well, Renn will become quite the research paper, and a whole lot of doctors will be curious about him."
All in all, there is no trying when it comes to Epilepsy. Yes, you try different things, but ultimately you must DO them, in order to know precisely what direction to follow. We have yet to only "sort of" give Renn the care he needs and deserves. No matter the cost, sacrifice, challenge, or amount of tears, there just is no trying.
Ironic that Master Yoda had set the motto for us, a long, long time ago...
Pray that tomorrow, March 13, 2013, is the day they find where Renn's seizures are coming from. Thank you. :)
Renn is tucked in, all nice and cozy in the very room we were in just two months ago, here at UCSF. We were welcomed with warm smiles, and lots of "I remember you! You're the little Jedi!". It was pleasant, and yet a little sad for the Hubs and I. We just couldn't help but celebrate back in January, when we walked out of here. We thought for sure we wouldn't be coming back... at least not in such a short amount of time.
Eventually we said goodbye to Daddy and E, and the old routine of putting on those electrodes began. Renn had asked me on Saturday if I could please shave his head because, "I don't want to be all itchy and sweaty when they put the buttons on, Mom." (and if you must know, YES. I got quite emotional with his sudden, rational maturity).
The thing about the glue that is used to secure the electrodes into place on your head? It stiiiiinks!! And any person who has been through this (or their loved one standing in the room while it happens) can tell you, it's not fun!
In the blink of an eye, we had about a dozen different medical staff members in and out of our room asking the exact same questions, checking the exact same reflexes, reminding us of the exact same procedures. He ended up having a seizure right away, so that was good news (again, it's a weird emotion to have). Dr. Amazing came by, twice, in fact (she IS Dr. Amazing, after all!), and looked at Renn and the video I'd taken of a larger, quite different seizure he'd had two weeks ago. She is concerned, but is elated that we are here. The PET scan is on Wednesday. Ugh.
After a bit, we had a little visitor stop by! Her name was Chelsea, and she made quite the impression on Renn. It was absolutely adorable to see his face light up. I really hope they can come back tomorrow.
When I decided to open up my computer, I was at a loss for words. An Author friend of mine, Susanna Hill, had written this blog post for Renn. She encouraged him, and made a cute video that made him smile like crazy! He loves her books (which she also sent him, just before he came here... Even going on Space Mountain not too long ago, in the loudest, most elated scream he screeched, "Puxatauny Phiiiiiiilllll!"- an inside joke between he and I), and was amazed at her Star Wars lingo. But, as I kept reading, I saw that she also encouraged others to send Renn their best. She asked them to write words that would get him through, that would enable him to keep fighting, that would show him how loved he is by so many... most of whom might never meet him face to face. I was, and am, in complete awe as the list of friends and strangers bursting with love and encouragement for our sweet Jedi, continues to grow.
Renn loved ALL the entries... He's been enjoying the jokes, the comics, the puzzles, the illustrations, and the ideas on how to pass time. I mean, they are ALL related to Star Wars. Could this kid be in intergalactic heaven? Yes... I believe so! But the one he has asked me to show him over, and over, and over again was the video posted by This Kid Erik (the best book reviewer around... and he's only eleven!). To see it, please click HERE. Be amazed!
As Renn sleeps tonight, I know he is feeling like he is on top of the world. He has no reason to be afraid, because he has support, love, and encouragement coming from all over the world. Thank you, Susanna... What a gift you have given our son.
We have been looking for a way to spread the word about Epilepsy to our community. Breast Cancer has one of the biggest campaigns out there, and it's freaking awesome! You literally CANNOT walk by a pink ribbon and not think about boobies. Sorry, you just can't! And trust me... that's a good thing!
As we have gone on this journey with Renn- our precious, brave, (almost) birthday boy- we haven't had much time to join other families in awareness walks, fundraisers, or other such things, in order to help promote Epilepsy awareness. In fact, it hadn't even crossed our minds until a few months ago! So, perusing the Internet while Renn was laying quietly in his hospital bed in January, the search began and ended all with one click. Why? Because I found an easy starting place, and by this time next year, I decided our family is going to participate BIG TIME in this event.
That's right... Purple Day.
Purple Day was started by a beautiful little girl named Cassidy (ironically, that was one of two name choices we had picked out if Renn would have been a girl!), who decided she wanted to spread awareness about Epilepsy. She started this in 2008, and apparently, it has become an international extravaganza! She is currently campaigning to get onto the Ellen DeGeneres show, and I think she's awesome. Oh yeah, I should probably mention that Cassidy started all of this... at age 8.
What do we do for Purple Day? Precisely this:
Every year on March 26,
WEAR. PURPLE.
That's it! Yes, go the extra mile and explain why! Have a reason, give a voice to this wicked disease!
And please, go to the Purple Day website, and see what kinds of things you can do in your community.
My goal is that every time someone walks by a purple ribbon, they think about those amazing, brilliant, talented minds who are all battling Epilepsy. And perhaps one day, our children's children can walk by a purple ribbon and think nothing more than what a beautiful color that ribbon is.
