Jedi Renn wants to meet Master Lucas

Brain surgery date has been set, friends. August 26th will be the first one, with one (possibly two) more scheduled in the following week. Now that it's on paper, the day seems so much more real, and we, as his parents, are having a hard time dealing with it.

However, Renn, the true Jedi Knight that he is, told us he's not afraid. And when I asked him if there was anything we could do for him to help him through this, he said, "I want to meet George Lucas."

Well, as you know, I'm not about to let something like this go by without even trying. SO... Let's give Jedi Renn his dream!

 

 

Please use this picture anywhere you can!! Share this blog post, share our Jedi's story. If you understand hashtags, please use #JediRenn wherever you post!

 

This would be so much fun, and could make Renn's dreams come true. He already has questions lined up... The first one?

Do you have any lightsabers?

 

 

Please, Mr. Lucas, help this Jedi just by making him see that you care. He'll be at UCSF the week of August 26th. He's so strong, so smart, and has already fought and defeated Darth Vader...

 

 

 

Now, all he wants is to meet you.



God bless you all! May the Force Be with You!!!

Jedi-like Faith

Life seems to get in the way in the times you so desperately need to write about it.

I apologize for not getting this update out there sooner, but for those of you who don't know, my mother (Renn's Grammie) passed away. It has been hard, painful, and quite devastating, but we know precisely where she is now... In heaven, with Jesus. She had Huntington's Disease, as did her mother and grandmother. It is a terrifying, and heartbreaking disease... And much like Epilepsy, too few people in this world know much about it. She was an amazing woman who, no matter what life threw at her, managed to stand tall, forgive endlessly, and devote herself to God and her family. I miss her.

Five days after she passed away, Renn was due back at UCSF. I wanted so badly to cancel it, of course, but if we would have, Renn wouldn't have been able to get into this test until the end of October. We've worked so hard to get him where he is and to get him all the tests he's needed up 'til now, we just couldn't allow life to stop. These were the last tests, and we wanted answers.

After a grueling three days in the hospital, lots of IVs, lots of miscommunication, watching 4th of July fireworks on TV, and waiting and waiting and waiting, we were able to get the tests done. There was so much drama, and I was so fazed due to all my own goings on, that I can't say it was the easiest visit for Renn or myself.

With the SPECT and MRI done, we came home. Within 24hrs, I received an email from Dr. Genius saying, "Strong work on the Ictal SPECT!  Prelim results show some interesting findings suggesting RIGHT or LEFT onset so I need to look at them with our group."

Now, someone might shoot off a confetti canon at that email. But not us. Why? Because after ALL these tests our sweet Jedi has done, NO ONE can seem to figure out which side these seizures are coming from (let alone, precisely WHAT is causing them). So, we started him on medication #9... FELBATOL. We haven't even been offered it before because it's on the "More Dangerous" list of all the medications. In some cases, it has caused liver and bone marrow failure.

 So, while Renn is on it, he will be doing biweekly labs for the first three months. We just entered week two. Has anything changed? No. He still has 2-4 seizures a day, and now he's emotional, having night terrors, and is overall lethargic.

Momma's. Not. Happy.

Well, the next email I got made me nearly throw up. I received it two days before my mother's memorial, and this day happened to be filled with a lot of other stress stemming from disgruntled family members. But, the email read as follows:

 

"Hi
I just presented Renn again at our surgery conference.  Once again he is a TOUGH case. The SPECT didn't end up being that helpful so in the end we have equal evidence pointing to both sides I feel the safest way to go is to place what are called burr holes in both sides of his skull and put in electrode strips to see of we can prove what side seizures are starting on. THEN if we prove a side he would come back at a later date to have the bigger grid on that side only so we can tailor an operation.

The burr hole procedure is very safe and once we had seizures recorded they are pulled out and he goes home in about 2 days.

We should talk more by phone but I wanted to give you some time to think about it. If we want to proceed we will have him meet our neurosurgeon.

Let me know when there is a good time to talk."


Burr holes. They are going to be drilling two holes inside our Jedi's skull because they just CANNOT figure out which side this is stemming from. THEN we will go in for the graph surgery, IF they can pinpoint a side.

 

If they can't, we're done. There's nothing more they can really do.

 

So, Renn will be starting the First grade on August 19th. We want him to begin the year with all the excitement, fun, and for him to get used to things before we take him out for this procedure. He will be in the hospital approximately 5-7 days, assuming all goes well.

 

Here's the thing (and I will leave you with this)... I finally had to explain to Renn what surgery meant, and what these holes will be for. I don't keep much from my kids. I just don't, especially when it pertains to them. You know what he said to me?

 

"Don't be sad, Mommy. It will be okay. I will be okay. We just need to get rid of the seizures, that's all. And we'll pray. God will help me."

And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. (Matthew 18:2-4 ESV)

Lost In Space

I am quite embarrassed at the fact that it has been nearly two months since my last post... Let me tell you, life does NOT slow down around these parts!

Quick update...

1. Renn passed Kindergarten!! We were so very worried right about the time Spring Break came along that he wasn't keeping up with the rest of his classmates. But, boy were we ever wrong! He got THREE awards: The Spelling Bee Award, ABC award, and the Principal's Medallion for Reading (yes, this made his writer momma PROUD)!

 2. Renn is 100% off all medications. And it's been very interesting to watch him all day long (now that he's not at school) to see just how the seizure activity really goes. It's been rough. And knowing how many he must have been having in class really makes it difficult to not worry about First grade.

3. I started using SeizureTracker to gain perspective on what's going on with him. It's GREAT! For anyone who is dealing with Epilepsy in any capacity, I HIGHLY recommend it! I have the app for my phone (it's for iPhone/iPad only... Sorry!), so I am able to not only time each seizure, but also record video and attach notes about the entire event. It's heaven, because it gives me the idea that I have some control. I know I don't but, hey... It helps keep me sane and I'm all about sanity right now.

 4. Renn's Neuropsychological testing went quite well! Haven't gotten the results back, but it was very interesting to learn that Epilepsy has definitely been the cause of his behavioral immaturity. I want to dive into this more, so I will come back with a designated post, when we get his results.

5. On July 3rd, Renn will be going in for something called a Single-photon Emission Computed Tomography (SPECT) scan. What will happen is when he has a seizure, they will inject him with a radioisotope that will follow his bloodstream to where the seizure is coming from. It will then provide the doctors with a better, 3D imaging information, as well as a cross-sectional view of what's going on in his brain when he has a seizure AND just precisely the spot where the seizures are coming from. If he doesn't have a seizure (which is my #1 fear), the test is useless. The isotope expires after four hours of being made. Ugh.

After the SPECT scan, he will be admitted for yet ANOTHER Video EEG, and on July 5th, he will endure an in-depth MRI as well as a brain perfusion. I'm not sure when we will be going home, but I'd imagine it would be on the 5th or 6th.

 

 

6. Last, but not least, I have started a Facebook support group for mothers who have kiddos with Epilepsy. If you, or someone you know is a momma with a child (no matter the age) with Epilepsy, feel free to join!

It's been a crazy school year, filled with more ups and downs than I'm willing to admit. But Renn has grown so much! We are going to continue this journey with him, as always... And as we prepare for the dreaded surgery day, we are thankful to have each and every one of you with us.

Blessings!

May The 4th Be With You: WINNER!

Oh goodness! We were so busy yesterday, I forgot to post who the winner of our fabulous contest was!!

 

Out of all the votes (both on this blog and among Renn's friends and family), it sounds as though most people want to see:

Chewbacca's evil twin brother, Toby!!!!

Wouldn't that be crazy? What if all that time in Return of the Jedi, Chewie was TOBY?! Eeek!

Anyway, our winner was chosen through Random.org, and Renn is happy to give his prize to...

 

 

Julie Rowan-Zoch!!!!!!

 

 

Yipee!! Now, Julie, you must email me your mailing address at: bethany(dot)telles(at)ymail(dot)com!! Congratulations!!!

 

Thank you to all who voted and spread the love!!

 

 

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Just a quick side note:

 

Renn will be at UCSF on Monday, May 13 for his first (of two) Neuropsychological Evaluation. This is a pre-surgical appointment and it id going to take all day (9am-4pm). However, he won't be admitted, and we will be able to return home that night. Please keep him in your prayers and hearts.

 

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May the Force Be With You!!

May The 4th Be With You!!

Today is officially STAR WARS DAY!!!

So you just know we are celebrating in this house!! Renn and I have been discussing all about what he wants to see in the new movie that will be coming out in 2015. He was wondering how on earth there could be a Star Wars movie without Darth Vader (hmmm... smart kid. Not even I had thought of that!)... So we got to thinking of what new villains could cause some major trouble in the new additions to this amazing series.

We came up with the following:

1. A secret young Sith Lord named Darth Bocks. He can do many flips and is really strong in the Dark ways of the Force. And he's Yellow.

2. Chewbacca's evil twin brother, Toby, who has been secretly posing as our beloved Chewie for years... learning all of the good secrets.

3. Luke Skywalker's son, Dylan Skywalker, who decides that he wants to take over his Grandfather's place, and pick up where Darth Vader left off.


Now Renn is asking for your favorite!! Which villain do you think should be featured in 2015? And please remember that Luke, Leia, and Han are all... well... a tad on the "Senior" side of things!! Those who vote and then share this post will get a cute little something from Renn, our little Jedi, himself! You have until Tuesday at 11:59pm (PDT)!


Have FUN, and choose wisely! You never know who you could face when the Dark Side is afoot!

Until Wednesday, friends...

The Differences in a Month: An Update

My goodness, it has been a while. I apologize to those who have been asking questions about any updates. We, as a family, have been incredibly busy!

I must mention though, that we had Purple Day! It was such a fun day!!

We have many pictures, but these were my three favorites. This was before the festivities began! We had a great turnout, and Renn was incredibly encouraged about being celebrated for having Epilepsy. He had been quite irritated, until that point, so it was a blessing to see him run, laugh, and play.

So update time... Let's go back to the last Unveiling the Sith post where we discussed the "game changer" as far as meds go. Prednisone (the steroid he was put on) was, in theory, going to jump start Renn's brain the way one would jump start a dead battery on a car. It was going to be two weeks of stress, irritation, and immense hunger for our little Jedi, with an additional two-week taper.

In that time, we also had to say goodbye to Dr. Amazing.

This was NOT easy for me.

So with the new doctor on board (we shall call him Dr. Genius), Renn started the steroid. His first day? No seizures! We were anxious, but had some hope. Second day? NO SEIZURES!! Okay, okay... breathe. But on the third day, he had not one, not two, but three seizures. The hubs was still hopeful and bubbled encouragement all over the place; but me? Nope. I knew this was another dud. And after one week, Dr. Genius agreed and we took Renn off the steroid with that same two-week taper.

Prednisone did do something interesting, however. It caused us to purchase locks for our refrigerator  and pantry. Our little boy, in three weeks time, gained NINE pounds! I caught him eating at 2:00am two nights in a row, he drank a gallon of milk ALL BY HIMSELF, in FOUR days! And not that we weren't watching carefully, mind you. He was just hungry all the time!

 



So where are we now? Well, Renn has had no medication whatsoever in the last three weeks. It's been a strange adjustment. The hubs and I considered that maybe his seizures would stop altogether once there was no medication (okay, we begged God for that), but no. They have dropped in number, however. And this last week when he had a pretty high fever, he had none! Coincidence? Yep. This morning proved that.

Anyway, Renn's PET scan came back with an "abnormality" on his right temporal lobe (and if the word "abnormality" is as confusing and unsettling to you as it is to us, join the club), so Dr. Genius was reluctantly convinced that Renn would be going through surgery this Summer. But just to be sure, (since we were in the throws of scheduling all the pre-surgical consultations and such) Dr. Genius and his associates took Renn's case and presented it at a Pediatric Epilepsy Surgery conference, yesterday. I mean, wow! Renn is probably going to be the subject of a research paper. THAT is what I mean when I say his situation is nothing but odd.

Dr. Genius called me immediately after the conference was over...

Consensus?

NO ONE KNOWS!

Renn's seizures don't make sense. That's the bottom line. And no doctor can seem to isolate just what is happening. Everyone has their own opinions, of course. But there isn't enough concrete evidence to help anyone make a serious decision on just what to do. We did get one guarantee, though: Renn's seizures are 100% focal. Praise. GOD.

So, we are now going to be taking our sweet Jedi back to UCSF for a stronger MRI that will focus on that "abnormality". If they see what they want to see, then we get to go home. If not? He gets admitted for something called Single-photon emission computed tomography (SPECT), which shows a map of blood flow through different parts of the brain. So, he will be monitored like a regular Video EEG (like all the ones we've done before), but this time he will have an IV as well. When he has a seizure, we will be injecting him with an isotope that will hopefully follow the blood flow to his brain and show the precise epicenter, if you will, of the seizure. The issue is, once the isotope is made we only have a four hour window for him to have a seizure. If he doesn't? We're basically done for.

If we get a seizure and are able to inject the isotope, Renn will immediately be sedated, and we will rush him to some other machine to take a closer look.

This visit is going to be HARD.

So, here we go again... I'm hoping that Renn can finish Kindergarten without dealing with another hospital stay, but chances are, that won't happen.

You're officially up to date... Peace, blessings, and love to you all!

 

One Year Ago... In a Galaxy Far Far Away

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.