Friday, August 30, 2013

Burr Hole Galaxy: Day 5

 We woke up in the wee hours of the morning only to discover that Renn's IV had fallen out once again. The poor Jedi... He'd had the hardest time falling asleep last night. I think the weight of yesterday was holding him down, and he was worried about things that he didn't even understand.

Around 11pm, I saw him staring at the wall. I asked if he was okay, and the look of grief took over his young face.

"I'm just... I'm just... I don't know, Mommy."

I held his hand and promised he could tell me anything. Then I asked him if he heard things today that might have upset him (which I was praying was not the case. I was not prepared to have this conversation, because I haven't even wrapped my own brain and emotions around it). Renn's eyes looked straight down. They were distant and full of fear.
"I'm sad, Mommy. I don't like to see you cry."
Lord, thank you for giving me a child with such a tender heart.
So, I cuddled with him. I laid in that stupid hospital bed, breaking all the PICU rules, and I held my wise Jedi. He shouldn't be concerned about ME. I assured him that I was crying because I love him more than anything. I was honest with how angry I am that this is happening to him. But we both agreed that God was running the show. And with that (and a couple sips of milk), he fell asleep.
Two hours later, we were faced with having to give him a new IV. Luckily, we had an incredible nurse who thought it best to let him sleep until he absolutely NEEDED his antibiotic. So, at 3:45am, we just made it happen. Not. Fun. It took only two tries this time, and he handled it with more grace than I wanted to.
At 7am, we were whisked off to pre-op, awaiting his 7:30am surgery to remove the electrode strips. Dr. Incredi-Genius greeted us with some lovely, hilarious jokes, and just like that I was walking him into the OR. I got to be with him when he fell asleep. I looked each one of the nurses and neuro assistants in the eyes, and knew God's angels were looking back at me.
Within a couple hours, Renn was back in his room in the PICU safe and sound. He woke pretty easily, and immediately wanted to take this picture for Daddy. He said, "I want Daddy to see that I'm okay and happy."
We played, we got excited about going home, and then Dr. Genius walked in and he and I discussed more and more about what's to come. And you know what I realized?

We asked for prayer about this whole surgery.

We asked that our family and friends pray that the discharges causing the seizures were coming from ONE side.
And you see, despite what is happening next, God answered that prayer.
Now we need to determine if the discharges are starting in the Frontal lobe or the Temporal lobe. We went over all the options. We discussed all the side effects, possibilities, pros, and cons. I can't say that I feel at total peace with this decision... yet. But, I can clearly see that God gave us what we asked for. So maybe, just maybe there's hope in this. Maybe we aren't making a bad choice. Maybe God is showing us that this was His plan. I'm still not so sure, but I acknowledge that I have a little over a month to enjoy each and every moment with my boy. My Jedi. Then, October will come and change our lives forever...
So now, I pray for peace. Tomorrow is another sunrise, another chance to wake up in a hospital that has running water, sterile equipment, and the most up-to-date technology, and it's another day that I get to see all the gifts God has given us. And best of all, tomorrow...
...we go home.
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.
John 14:27

Thursday, August 29, 2013

Burr Hole Galaxy: Day 4

I posted the following on Facebook, at 4:30 this morning:

I totally jinxed our night of full sleep... Over zealous nurse, and Renn kicked his IV out (it was on his ankle) so they had to put in a new one at 2am. They tried THREE TIMES, and it didn't work. I got so mad I wanted to scream; Renn WAS screaming... They gave up and said they'd talk to the doctor about it in the morning.

I woke up, two hours later to someone new (and our nurse) trying a FOURTH time....
Did it work? NO. Was I trying to figure out how I could hit one or both of these people without getting Into trouble? YES. INDEED.

Renn was screaming and crying, "Please just leave me alone!"

FIFTH attempt was a charm. Sweet baby Jesus, have mercy. Renn is back to sleep, and I'm going to try, too. Sigh... Hospitals are no fun.
Fortunately, our morning actually did get better from there. Renn slept until 9:40am! The poor Jedi. But, when he did wake up, he had a great attitude, perfect smile, and I'm hoping it had nothing to do with the strawberry "milkshake" he had for breakfast.
We enjoyed our time together, actually getting some dreaded schoolwork done before I let him wander off into videogame land.
About two seconds after he started playing, Dr. Genius and his team walked in. We discussed the plan for tomorrow, and possible days to go home. Renn will be having his second surgery sometime in the morning to remove the electrode strips and wires. This surgery won't be as gruesome, but it will mean I will finally get to see what they've done to my baby's skull. It's going to be difficult, especially since I will be all on my own without the hubs (who is at home with Eli, eagerly awaiting the call that says they can come pick us up). But, it shouldn't take very long, and we might be able to head home as early as Saturday.
Then came harder news... Dr. Genius let me know the plan he is concocting, and it nearly made me faint. I knew, I KNEW what the next steps might entail, but I wasn't prepared to hear a time frame. It still isn't 100% going to happen, but the odds are ever increasing in its favor.
Now, I am warning you, this might not be easy to read.
Sometime in the beginning to middle of October, Renn will (more than likely) be undergoing a Right Temporal Lobectomy. Laymen's terms? They will be removing the entire right temporal lobe of Renn's brain. Not a piece of it, not a small section that is causing all the problems... the ENTIRE thing. Side effects include memory loss, vision impairment, some minor muscle function, as well as various more minor things.
I stopped breathing.
And here I thought things were actually looking up! I called the hubs and we broke down together. Oddly enough I had to get off the phone quickly because Renn had a seizure and I had to press my magic button. But all the positivity, the assuredness, the confidence, and strength I had, went flying out the window. This surgery would literally change my son forever. Is it worth it?
We will be coming back to this issue because I actually have a friend whose 6yo daughter just had this procedure done. I want to see if she will share her experience with us, so that we could talk about it in better detail. For now, let's put it in God's hands.
Thankfully, after that, we got a special package. A mommy friend of mine (and a mom to one of Renn's friends from school) had let me know something was coming, so we were quite happy to see it! Inside was a whole bunch of goodies... A Star Wars Angry Birds sticker book, some treats, Star Wars playing cards, a Star Wars water bottle, and a lightsaber. Of course, Renn went ballistic. He pulled out the lightsaber super fast, and it wasn't long before I noticed it had writing on it...
It said, "Get well soon Jedi Renn! -Rm 1"

His whole class signed this lightsaber. Both Renn and I burst into tears.
 Uncle Dumpkin and family showed up again, bringing much entertainment. Renn laughed and laughed to the point where I thought his sides would truly come undone. It was God's medicine for both our hearts.

We got a little gift from Daddy and Eli, too, and it was so yummy!! We just can't wait to come home.
All in all, we have had four "typical" seizures, as well as several in his sleep. We will be going through the second surgery tomorrow, so prayers for ease and comfort would be much appreciated.
Here's to the reality of Epilepsy... We knew the day would come where we would have to start making rough decisions. But to actually be faced with making them? Whole different caveat. The hubs cried out to God, the moment I had to hang up and said that he was listening. God gave him this passage, and I am still trying to hold tight to the promise he's made, here:

And getting into a boat he crossed over and came to his own city. And behold, some people brought to him a paralytic, lying on a bed. And when Jesus saw their faith, he said to the paralytic, “Take heart, my son; your sins are forgiven.” And behold, some of the scribes said to themselves, “This man is blaspheming.”  But Jesus, knowing  their thoughts, said, “Why do you think evil in your hearts? For which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic—“Rise, pick up your bed and go home.” And he rose and went home. When the crowds saw it, they were afraid, and they glorified God, who had given such authority to men.
Matthew 9:1-8
Hold Renn in your hearts again, tomorrow... Thanks, friends.
Behold, I will bring to it health and healing, and I will heal them and reveal to them abundance of prosperity and security.
Jeremiah 33:6 

Wednesday, August 28, 2013

Burr Hole Galaxy: Days 2 & 3

Doesn't the name Burr Hole sound sort of like it could be some kind of galaxy? I amuse myself...

Well, today is day three here at UCSF, but I'd like to do a quick recap of yesterday.

Renn did not sleep that first night AT ALL. It was impossible, as every nurse from San Francisco came to check on him. He woke up at 3am, and let me know his tummy hurt and that he was kind of hungry. He didn't want anything besides an orange popsicle. So, we obliged!
Twenty minutes later, we saw that orange popsicle once again. Poor kiddo... At that point, I knew he was angry... Angry at the situation, angry that he was here again, angry at me for putting him in through this. It took all I had to not sob uncontrollably. And it was that exact moment when I realized that it was the 27th, and my mom had been gone for two months.

We were already over that stupid day.

As time went on, our sweet Jedi warrior did not want to eat. (In fact, we barely got him to drink a milkshake at 2:45pm). He just wanted nothing. At about 12:30, however, we were informed that we had "A whole bunch of people wanting to come in and see Renn". WHAT? Renn was semi asleep, and thought maybe Daddy had come back, but I knew exactly who those people were...

My 86 year old grand mother lives in Marin County, and my Uncle, Aunt, and sweet cousins (who live in Southern CA) were visiting her. Apparently they'd all decided to trek over and see Mr. Renn. It was incredible to see familiar, loving faces, in a place where loneliness and boredom quickly consume you. I am grateful that they came...

Even though the Jedi was having a hard time  (it truly hurt for him to smile), I think it made a giant difference for him to be surrounded by people who loved him. He loves his Aunt and cousins so much. Of course lets not forget his Uncle "Dumpkin" , and all the antics that he provides.

Nana loved visiting with Renn... I think it was hard for her to see her great-grandson in such a state. He tried his best to wake up and interact with her. Poor baby, I could see it in his eyes that he was mad at himself for not being in a better mood. He told me today how excited he was to see them and that he wanted to give Nana a giant hug, "But Mommy, I wasn't myself. I wasn't happy."

Such a heart, that little man...

At around 3pm, I had finally had enough. Renn just wasn't recovering! So I sat with him, and said, "Honey, what's going on with you? You know it's safe to tell me. I think the bravest of all Jedis tell the truth. Will you tell me?"

He burst into tears and said, "But Jedis don't get scared. And if they're hurt, they don't say it because they are brave."

I held in my own tears... Our baby was in pain. Pain ALL DAY LONG, and didn't want to tell me because he wanted to be tough.

Heavenly Father, give me the same strength as my six year old...

Needless to say, we took care of that immediately. He had his typical giant-sized seizure (YAAAY!!), then went to sleep. He slept alllllll night, only waking when he was checked on. The nurse we had was so incredible. He (finally) brought out the faces chart- I call it "the faces of pain"- and Renn pointed to the saddest face on that sheet most of the night. It broke my heart. I felt so terrible. However, when I woke up at EIGHT-THIRTY this morning, I saw a smiling Renn, sitting up, and pointing to the happiest face on the chart.

I had my baby back!
The rest of the day today, we played video games together, we ate, and we spoke with both Dr. Genius and Dr. Incredi-Surgeon. The Doctors let me know that the MRI blip may have been nothing after all (worst part of our day), but that we were going to proceed as planned and have his removal surgery on Friday. Renn had another giant-sized seizure this afternoon, which will hopefully give us even more information.
Our precious boy is sleeping, once again... And tonight? No one will come in and check on us. We get to completely sleep, and I am so grateful.
Tomorrow should be an even better day!! Praising God always, and again I say, thank you for all your love, encouragement, and support.
My presence will go with you, and I will give you rest.
Exodus 33:14

Tuesday, August 27, 2013

Burr Hole Galaxy: Day 1

 Hi friends...

Yesterday was a difficult day. And I apologize for having to sum up everything into one post. I am sitting, typing, and fighting the inevitable sandman who is so frantically knocking at my eyelids. However, I know that I would sit and stoop (instead of truly sleep) about all the things I wanted to say in this post. It's the curse of a writer, I'm afraid, so here I am.

We arrived at UCSF right when we were supposed to, at 8am. Surgery was scheduled for 9am, but we quickly learned that it had been pushed back to 10am. And then, of course, we didn't get called back until 11:15am. But you know what was fascinating about him, yesterday?

His sense of calm. In this picture here to the right, he was walking down the hall to Admitting. He was looking at strangers, smiling, waving, saying hello, all while humming the Star Wars theme song. I walked behind him in awe. My husband was at a loss for words.Where did this precious boy come from??

We waited for what felt like 2.6 centuries, doing all we could to distract our brave Jedi Warrior (knowing all the while that we were trying to distract ourselves). Obi Wan Puppy was given a hospital bracelet because he was going to be by Renn's side for the whole stay. Our Jedi played games on the Wii system Child Life brought out for him and never once asked when it was our turn to go.
But when we finally went back, I saw fear in Renn's eyes for the very first time. It was ever so slight, ever so brief, but I still saw it... and it broke me. I honestly only knew to lie and tell my son that it was going to be okay... I knew it was a lie, because my own fear was getting in the way of being able to believe that statement myself. I could not guarantee, without a doubt, that everything was going to be "alright", why was I trying to convince him?

I prayed that the nerves would calm down in all three of us. I looked at my sweet husband, read his face, and knew he was praying for peace as well.

We got to the room where we were to have all the final discussions with all the people we were literally putting our son's life into the hands of. They gave Renn some "happy juice" and boy oh boy... Those were moments that I will never forget. It's not every day that you see your six year old act like a drunk, frat boy, but let me tell you- it was the laughter we needed to pass the time. He kept saying he felt like he was flying an airplane. And the smiles were contagious.

Then, it got hard. It became real. And this "little procedure" didn't feel so little. They were taking our first born son, putting him to sleep, and drilling four holes into his skull. They were going to put something foreign into these holes and lay it across and possibly INTO his brain. What, God, were we thinking?

It was time to let him go... It was time to trust him in the hands of people we'd only just met... It was time for this final four-part phase to get started. There was so much confusion, emotionally speaking; so much hope, fear, anger, resentment, love, and not to mention every memory of our little boy from birth till that moment came flooding in. But, we knew one thing... God, our true and most perfect Father, was taking care of him.
The hubs and I waited. And waited. And waited. And waited. We carried around Obi Wan Puppy and Renn's precious Blankie as though they were our infants. We met an incredible family, with a life changing story of their own. We all talked together for hours... 5 1/2, to be exact. It was bittersweet, and the last two hours felt like pure torture.

Finally, Dr. Incredi-Surgeon called... Renn was done. He came and found us quickly, and let us know all the details about the surgery. No hiccups, no roadblocks, nothing. But then, there was some seriously good news... The kind of good news that we've been praying to hear... Dr. Incredi-Surgeon let us know that the last MRI we had, they actually found something that they had never seen before. Something lit up bright as day, in an area of the brain that is most commonly an "issue area" when dealing with Epilepsy patients. Which means Renn truly has a shot of beating this thing.
Unnerved, relieved, and desperate to see our son, we paced the floor for thirty-five grueling minutes. And when we got to his door, an almost angelic-like halo covered him. Sure, it could have been the tears in my eyes, but there he was: Our baby boy who was born four weeks too early, so tiny, so frail... Who is now this brave boy, constantly blowing us away with his strength, generosity, kindness, and laughter. Our Jedi.

It took him some time to wake up. But when he did, in the groggiest, 80-year-old-chain-smoking-man voice, he said, "Where's Daddy? Can I play Angry Birds Star Wars?" He was safe. He was still him.

Last night proved to be stressful. A lot of frustration, pain, fear -on his part and mine-, swelling, blood pressure issues, heart rate scares, and nurses. (Holy on-the-hour-pestering, Batman!) But, we endured. He persevered.
In the next post, I will combine what went on all day today with whatever comes up during the day tomorrow. If you made it this far, thank you for loving us that much to read my obvious form of therapy. Thank you for praying for Renn. For spreading his story around, for loving him, for taking him in your hearts.
More tomorrow.
(photo: Tracey M. Cox- a sweet friend, a sister in Christ, author, and Renn supporter)
2 Corinthians 4:18
... as we look not to the things that are seen, but to the things unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Sunday, August 25, 2013

One Request

In less than 12 hours, the first part of Renn's far more serious journey will begin. We are asking for one specific thing from our beloved friends and family:

Please PRAY.

Pray for Renn. Ask God (or whomever you pray to!) that not only will this first surgery go well, but that we get results. Those results need, need, NEED to say that his seizures are coming from ONE. SIDE. ONLY. Friends, if the electrodes that are being implanted onto his brain show discharges from both the left and right sides of his brain, our hope for a cure for Renn is 100% over (unless we are given a miracle by God). If the discharges come from one side, we will continue to parts 3 and 4 of his surgical journey.

I will be updating this blog nightly, as Renn and I stay in the hospital this week. If you want to write messages or send pictures, please feel free to do so! And we thank all the amazing people who have been sending Renn (and Eli!!) cards, gifts, and love all this past week. You are such a blessing, and we thank God for you.

Before I go tuck our sweet Jedi into bed, I wanted to share one last thing:

We have been given a bible verse that really gives our family peace. It has and will continue to be the mantra we pray over Renn, as we watch him endure all of this. If you feel it necessary, please write this verse down, and whenever you see it, please pray for Renn. If you want to write his name on your rearview mirror, your hand, on 1,000 post-it notes- anything to remind you to pray- that would be amazing. We love you all; God bless each of you. Till tomorrow...

Yet what we suffer now is nothing compared to the glory HE will reveal to us later.
Romans 8:18

Monday, August 19, 2013

First Grade... A New Planet

Let's have a 100% pure, totally bragalicious, happy post, shall we?

First of all, the care package from George Lucas' team arrived... My goodness, what an incredible gift!!  He was so excited, he didn't quite know how to react. He thought (when he saw the return address label) that the package had come from Luke Skywalker, himself... But his eyes widened when I explained it was from George Lucas' company.

He quickly opened the package, and pulled out item, after item, after item... The hubs and I were fighting inevitable tears with each gasp Renn gave, when he'd pull out something new.

To say he was in shock, though, was not far fetched.

We would like to thank the kind people at Skywalker Properties, and their PR staff for thinking of Renn, and for making that smile stick on his face like glue... You have no idea how amazing you are for doing what you did. You have a fan for life!

Alright, well... Today, Renn started the FIRST GRADE. And let me tell you, he walked onto campus with all the confidence and excitement that you've come to expect from our incredible Jedi! He was a little bit behind the power curve because we'd missed his back to school night, last Thursday, due to his MRI and Pre-Op appointment (more on that on Wednesday!). But, he lined right up with some GREAT friends from last year- thank you, Jesus, by the way!-  and off he went!
With all that is coming up, it was difficult for the hubs and I to prepare for this day. It took us by storm, to say the least. We found ourselves sitting by his side as he laid in bed sleeping last night, holding back more emotions than we knew humans could possess. And what's funny is, though it was unspoken, I believe we both braced for impact. Monday meant first grade, but it actually meant that we were about to embark on a journey that was so brand new. So terrifying. And so... out of our control. Not only is Renn a "big kid", now, but he was a mere one week away from a situation that we cannot wait to watch him overcome. This kid faces the word "surgery" like most kids face skinning their knew. We are in awe of him, and now he's growing up too fast.
Eli is so proud of his older brother... He all but held his hand as we made our way to the blacktop. And as many four-and-a-half year olds do, he had his outbursts of anger, craziness, sadness, and silliness (just about all at once, too). I found myself being jealous that he could get away with it!

So, there you have it. Renn ended up having a GREAT first day, and he said his favorite part was eating in the cafeteria. We can't wait to watch him grow and conquer the world...

... because first grade is just the beginning.

Tuesday, August 13, 2013

The Countdown Begins

Well, friends, I must say... The outpouring of support for our little Jedi Renn has been incredible. No, that word doesn't even do it justice. We have been blown away by the emails, comments, shares, tweets, blog posts, and support he has gotten regarding his wish to meet Master Lucas. You have shown more kindness than we know how to handle!

And by the way... Holy cow. Ever play 7 degrees of Kevin Bacon? HA! That game has NOTHING on George Lucas. Maybe it's because I am connected to a fantastic array of creative people, but let me tell you, it didn't take long before I had people who actually worked WITH George Lucas emailing me and asking how they could help. We eventually got word (thanks to author, Julie Gribble)! The email read as follows:

Dear Julie,

Your email was kindly forwarded to us by Lucasfilm. As you may know, George Lucas sold Lucasfilm to the Walt Disney Company late last year and has since retired. As such, our offices have shifted location.

Thank you for reaching out to let us know about your friend Bethany's son, Renn. It is wonderful to know that Renn's love of STAR WARS is a source of strength and inspiration during such a stressful time. He seems like a very resilient and strong little guy and we wish him all the best!

Mr. Lucas will unfortunately be unavailable to meet Renn in person. However we are hoping that you could provide his direct mailing address so that we can send him a care package. We'd love to know if he has a favorite STAR WARS character/film and what video game system he may use. 

Thank you again for reaching out to Mr. Lucas.

WOW! Right? I mean... WOW! So, naturally I emailed them back (after the hubs and I shared a good cry and a few Thank you, Jesus, for caring about Renn's heart prayers). I thanked them over and over again, and they replied:

Dear Bethany,
Thank you very much for sending along your contact information and some of Renn's favorites from Star Wars. We are so happy to put something together for him.  We will be in touch very soon!

All the best to you and your family. You are in our thoughts!
So, we wait!
The countdown does begin, though. Two weeks from yesterday, Renn's burr hole procedure will be done. Then we will wait for seizure activity, and then he may have the graph placed directly onto his brain on August 30th. If that is done, we will remain in the hospital until we get enough seizure activity to deduce the exact epicenter of the seizures, and then he will have a third surgery to remove the cause.
I am saddened that he will only get to go to the first week of First grade before all this begins. He is so excited and can't wait to show everyone his new Darth Vader backpack. However, I am also saddened that he won't get many visitors due to how far away from home UCSF is. Luckily, the hospital is packed with wonderful volunteers and Child Life specialists, but I'd imagine that familiarity would be something so warming for his heart.
Keep the picture and blog post circling around! One never knows who might see it and might tell Mr. Lucas all about the NEED, here. Renn would LOVE to have anyone visit, of course, but this Momma is going to do all she can to make his dreams come true.
Next time you see this Jedi, he will be a big FIRST grader!! Time sure flies...