De-emphasizing GA-1

This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob. 

We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped create and redesign the formula Reagan drinks, he’s helped with the protocol for treatment and during our meeting, he said things that turned our world upside-down and kept it spinning long after we left.

In the middle of this corn field, is a cutting edge facility filled with people who have seen more GA-1 patients than anyone. You see, the Amish are more prone to genetic disorders due to their small genetic profile. And Dr. Strauss has treated hundreds of children with GA-1 not just in the Amish community, but throughout the world.

He eloquently explained GA-1 and the part of the brain that GA-1 attacks, comparing sections of the “basal ganglia island” to a pizza, with a cheese part and a crust part. He explained that there’s only one type of cell, “located in the crust” and this is the only location in the entire body where this type of cell is located, and that GA-1 only seeks out this type of cell.

After looking at Reagan’s MRI and going through the history of how her crisis unfolded, he confirmed that the manner in which she collapsed is how GA-1 works and that it’s a terrible disorder. He also said that had we done an MRI the day before her crisis, everything would look normal. Her MRI on the day of her crisis proves it was an isolated incident, and shows that the one type of cell this disorder goes after, was destroyed.

We continued our discussion, he said the greatest risk for damage like this is until the age of two. After two, the risk declines greatly, which we already knew. But, what we didn’t know is that if there is a crisis and GA-1 destroys the one type of cell in the crust of the basal ganglia, it’s gone. There are no other cells like that in the brain or the body, and the risk for another crisis is essentially removed.

Now, no one will come right out and definitively put on paper that a crisis will never happen, ever again, but as we spoke to Dr. Strauss our level of stress and anxiety started to ease up. Yes, Reagan will have GA-1 forever, it’s in her DNA, but we can begin de-emphasizing it’s impact in our lives.

Looking back, planning and bringing home Reagan on day two of her life was essentially like moving into our newly constructed dream home. On day four, when we received the devastating news of her genetic disorder and learned about this terrible thing called GA-1, we essentially boarded up the windows and barricaded ourselves inside, as if we were preparing for a category five hurricane. When Reagan had her crisis, our new and perfectly planned home was damaged and we dug in deeper—or to use a phrase only Floridians say during hurricane season, we hunkered down.

But at this appointment and to continue with the analogy, Dr Strauss began to take down the boards that covered our windows to show that the storm had passed. Yes, the storm’s damage had been done, but the damage HAS BEEN mended in a new way, this time with character and uniqueness

GA-1 doesn’t need to define Reagan, and up until this point it has been defining so many of our waking hours.

Now our position is slowly shifting; if she doesn’t drink all her formula, it’s OK. If she doesn’t meet exactly 20g of protein a day, it’s OK. So many times we’ve felt the pressing weight of not meeting a specific protein goal, so much so that we end up begging Reagan to ice cream or cookies to help her meet the protein goal. He gave us a wide range of 18g – 25g of protein for a goal. Just writing that makes me feel more relaxed. This approach, is mainly due to her age and the lowered risks, but also because she’s had a crisis and that particular type of cell is gone.

Dr. Strauss said Reagan reminds him a lot of another GA-1 patient of his. She recently turned 19, is going to college and just got her driver’s license. She also has a movement disorder and had a crisis.

“You will be surprised at how independent she will be.”

I could have cried when Dr. Strauss said that.

Then, we talked about the medicine. He wanted to know why she was on such a concoction of neurological medication. Rob and I discussed that it was due to her movement disorder and everyone being fearful of more seizures. We just thought this is what you do. He colored in our thinking by telling us it’s because when doctors see a problem, it’s like a popped nail and they can’t help but grab a hammer to fix it.

Seizures are a common occurrence during a metabolic crisis, and Reagan had three. But she hasn’t had any since then. We’ve driven ourselves crazy wondering if she hasn’t had seizures due to the medication she’s on, or is it because she’s not prone to have them at all? No one has felt comfortable taking her off the medications because what if she has another seizure? Dr. Strauss likened that line of thinking to walking around with an open umbrella over your head and rain boots on every day because it might rain.

The months following Reagan’s crisis were understandably dark times for both of us, and even though we have emerged from that darkness, it has stuck with us. For the past 4+ years, we celebrate every gain Reagan makes with extreme joy, but there is always a part of us that wonders if it will be taken away. When will GA-1 pull the rug back out from under us? When will this all come crashing back down? Living like that has taken an unseen mental, physical and emotional toll on both AM & I. And when Reagan gets sick, like every child does, we retreat within ourselves, preparing for the worst.

But hearing the words from Dr Strauss “begin de-emphasizing GA-1 and its impacts in our lives” was something freeing for both of us, as if someone had removed the albatross from around our necks. Do we still need to watch what she eats, make sure she drinks her milk (formula), and be cautious when she is sick? Absolutely, but that sort of normal is music to our ears. We can do that.

“Get out from under this dark cloud that her crisis has had on your life. It’s over. It’s never going to happen again.” Those words spoken by Dr. Strauss to us were like a crisp breeze over our face.

I get nervous writing something with such finality and while those were his words, what if he’s wrong? There are others in the medical community of genetics who aren’t so willing to provide guarantees. In medicine and in life, there aren’t guarantees and we understand that. But the freeing feelings Rob and I felt as we sat in that patient room were unmistakable.

What now?

Well, we’re going to start systematically weaning Reagan off her neurological medications, there are four of them and this could take a few years to accomplish. Two things could happen, 1. her movements might increase and 2. she might have a seizure.

If her movements increase, we’ll see by how much or if she’s able to work through them. The benefit of removing some of these medications is her clarity can increase, her behavior and mood could improve, maybe her talking too. The risk and reward have shifted. Before she couldn’t control her arms from flailing, and now she’s trying to run and do ballet twirls and pliés all over the house.

And we’ll pray she doesn’t have any seizures. But we’re putting the rain boots away and our house isn’t going to be boarded up anymore. GA-1 is here to stay, and we have a healthy respect for it, but we’re ready to de-emphasize it in our lives and try to live a more normal life.

Healing.

You know what’s crazy about open cuts and wounds? They heal.

We often say time heals all wounds but I tend to disagree with that statement. As a person who has had lots of wounds, other than just this massive physical wound that’s healed on top of my head, I think a more accurate statement is that over time, we learn to live with the scars from the wounds we’ve endured.

One year ago today I had brain surgery. Looking at me, you wouldn’t know that I have a scar from the top of my head to just below my ear. You wouldn’t know that I have titanium plates under my skin, or that I don’t have 100% feeling in my scalp, and that much to my chagrin, I think my head feels like the Grand Canyon. Rob plays with my hair every night and he says, “you really can’t tell,” but I think he’s just being a good husband.

That’s the thing with invisible hurts and wounds, if others can’t see them, it’s like they don’t exist. I’ve always said my brain surgery was a side dish to the main course of our daughter Reagan and her struggles. Her struggles are visible, so there’s an understanding amongst other people when we’re out. But there are lots of invisible struggles and everyone has them.

If you’re going through something mountainous, or Grand Canyon like, every step might look like one where a wound will be inflicted. The inevitable thing in this life though, is that wounds are around every corner, from a friend, a spouse, a family member, a Dr. report or the sidewalk outside.

Please be encouraged though, when your wounds begin to heal, you will figure out a way to live with the scars and not just live, you will be joy-filled again. If there is one thing I’ve learned in the past five years it is that God is serious about seasons. He’s always teaching you no matter what the season, but the times I was closest to him and the times I learned the most, was in those really rough seasons. There was something being refined inside of me, so that in the next season something new could shine.

I’m grateful to be one year post op and out of brain surgery season, but there were valuable things I learned while there. Because of that tough season, I will walk more confidently in the days ahead, and you will too.

Mountains are Rocky

Ok, so I know the last blog was about making it to the mountain top, and yes, the metaphors that go along with that and our life are poignant, but it dawned on me, that mountains still have rocky terrain. You’ve got the view and perspective of where you’ve been when you get to the top, but it’s not smooth walking.

That is life in general. It’s always an ebb and flow. There’s always an up and a down. Always emotional swings. Small humans have a wide range of emotional pendulum swings.

I mean look at these two photos.

This one says: “Holy COW! We’re on a gondola, in between mountain ranges! We’re at the top of mountain!”

And this one says, “I’m freaking tired of walking and I want to cry.”

You know, the conversations we had with Reagan on the mountain top were along the lines of you need to stop complaining.

Thank Heaven that God’s not like that with us. When we say: “But WHY do I have to go through this? This is hard. I don’t want to keep going. I quit.” God just sits there with us. He gently guides us through.

I lack gentleness in general. I’m all, “Get moving and stop it. We’re here to have FUN!” And Reagan tries her hardest to say CHEEEEEEEEEESE in all our photos with her entire body, or refuses to look at the camera all together.

Many of us are striving for “mountain top living” however our thoughts on what that looks like I believe are skewed. You’re not free from the struggles of every day life when you’re on the mountain top. Your location doesn’t alleviate you from having to do hard things. Everyday life still happens, the view is just different.

Across the World

Four years ago, if you told me that we’d travel to another country WITH Reagan, I’d say you’re crazy.

But here we are, on top of mountains, doing things we never even dreamed our family could partake in.

This trip is exceedingly, abundantly more, than we could have ever imagined. Guys, there’s snow, in JULY!

We’re in Whistler, Canada. We went through customs with Reagan. We flew almost 8 hours and drove 2 1/2 hours to get here. We took two gondola rides, on cables, above mountain tops to get here.

I’d like to point out, it’s not just any gondola ride. It’s the Peak to Peak. It’s the longest gondola ride, almost 2 miles, and the highest lift of it’s kind, with an elevation of 1,427 feet. It’s some sort of record. Which is ironic because I feel like we’ve broken a life record just to make it here.

As I looked across the horizon and over so many gorgeous mountain tops, I couldn’t help but think about how far away we are from what we’re used to, and how scary that can be if you’re a parent to a medically complex child.

I am SO proud of us.

Am I nervous? Yes!! I keep wondering how we’re going to help Reagan meet her food goal by winging it, especially on top of a mountain. Evidently Canada doesn’t want to forget their vegetarian friends because lo and behold, there was a veggie burger just waiting for us after our first gondola ride, in all of it’s quinoa glory. I was shocked.

Can I tell you an honest truth? If you’re in a tough spot in your life right now, I know and I understand, that you don’t think a mountain range is in your future. The climb might be arduous. No, it will be arduous, it’s a mountain top we’re talking about! But you can make it there, God will help you. And boy, when you do…it will it be exceedingly, abundantly more than you could have imagined.

We literally made it to the very top of a mountain with our daughter today. I’m amazed.

Fundraising – Plasticity Brain Center

We are so very excited to announce that the Plasticity Brain Center is offering a discounted price for one week of therapy for Reagan and for Brian.

For coming in second, Reagan will be able to attend for $1500 and Brian will be able to attend for $2500.

In speaking with the center, we’ve been told people have actually called them offering to pay for Reagan to go. This is truly amazing and so very kind. We’ve received a lot of positive feedback about helping both Reagan and Brian to attend so we’ve come up with a few ways you can help with this.

Reagan signing I love you.

Here is a link to the gofundme for both Reagan and Brian to attend a week at PBC. I think this is the best way to donate for both of them. 

But Rob and I don’t want to stop there. We want to help create a scholarship for other people in need of receiving this therapy and we’d like to lessen the financial cost of this truly amazing neuroplasticity therapy.

After speaking with PBC, they aren’t able to hold donations or a scholarship themselves so we’ve come up with THREE ways to donate based on the messages we’ve received :

  1. GoFundMe
  2. Venmo – @Anne-Marie-Wurzel please put #PBC in the memo so we can track this
  3. I’ve received several requests to mail a check for Reagan’s therapy. To do so, please make check out to Reagan Wurzel.
    MAIL TO: The Wurzel Agency | 1942 W. CR 419 | Suite 1000 | Oviedo | FL | 32766

In addition, my coworkers and business partners have expressed an interest in holding a dinner and we will post information about that when it’s available. Honestly, the outpouring to help is beyond amazing. I have no doubt we will raise more than what is needed, which is why we intend to create a Love FROM Reagan scholarship.

When Reagan had her metabolic crisis, a group of girlfriends created Reagan’s Instagram and called it love_for_Reagan. Now, it’s time for us to send love out FROM Reagan and that’s what this scholarship for PBC patients will be called. There are so many deserving of receiving this treatment, and it’s our goal to help them attain it.

Thank you for all the love. We are so grateful.

Taken

When everything is taken from you and your normal is shattered, it’s impossible to know where to start to put the pieces back together. Especially at the beginning. Once you begin getting the shape of your new normal, a piece falls off. Maybe it wasn’t meant to stick. Maybe the glue that was holding it together was weak. Maybe it was supposed to happen later, or never at all.

So you try to fix it, but then the hassle of making it fit your way is too much. You leave it behind.

And you journey on. Hoping to find a new thing that will help to shape and heal. The goal is always to restore what was lost.

When your world is upside down, you’re exhausted and determined.

Relentless. Unyielding.

This contest for a free week at the Plasticity Brain Center is that relentless pursuit. Everyone I know, and people I don’t who have watched Reagan’s story for five years are voting and sharing and pleading.

And.

I see another mom fighting for her daughter. Every family member, every friend, anyone who has heard of their story is in pursuit of this one thing. Seeing our children plateau is not an option.

The thought of it not coming to fruition is too much to bear. For her. For them. For me. For Reagan. For us. For everyone who is voting. Everyone is taking this on.

You see, the thing is, when something is at your fingertips (and I know this contest isn’t over yet) you can’t bear to have it slip through your fingers. You already experienced that when the traumatic thing happened. Everything slipped away. And you and everyone you know is bound to never let that happen to you. Not this time. Not again.

And that is why, whenever this contest is over, no matter who wins, Rob and I have decided, and it was confirmed through another friend, that everyone should have this opportunity.

Last time we went to the Plasticity Brain Center, we fundraised. Fundraising and asking for monetary help again, well quite frankly it can be exhausting. The truth is, while so many continue on a normal path, as they should, we are still fighting the fight we were given five years ago. We’re working on talking in sentences, riding a tricycle, eating more diverse foods. I’m worrying about Reagan having friends because talking is difficult. And this other mom and family, she has worries she never thought she’d have to face and choices and decisions and medical expenses.

|Side note| The NFL draft and all the inspiring stories of these children who fought adversity and now as adults can talk about their journey to the top, it’s incredible.

Reagan at UCF. #futureknight

That’s what I want.

The other night I cried watching one of those SportsCenter stories, wondering if there would be this amazing overcoming story that Reagan will tell as an adult. Like when she can actually use her words and say, “My Mom and Dad, were relentless in their pursuit of my recovery and because of them and everyone they knew, and even through the generosity of strangers, I can stand here and talk. I can stand here and, you name it.”

Reagan doing Special Olympics Young Athletes

Sunday night, a friend emailed that she and her LuLaRoe consultants would fundraise for the two finalists who don’t win. My goodness, as of this writing, there are 20,000+ total votes. If everyone gave $1, the two remaining finalists could attend this amazing therapy, FOR FREE. She reminded me that generosity never ends and that’s because love never fails. So as we are crawling, there are those who will say, “take my hand, let’s keep going.” And that willingness to hop alongside, to run a race they weren’t given, it blows me away.

When this contest is over, we will share the fundraiser. And perhaps, any additional funds raised over the cost for two people to go, we can start a scholarship at the Plasticity Brain Center for people who desperately need the care, but are unable to afford it.

I’m reminded of the amazing people in my community, people I know and people I don’t. And I’m thankful.

What a Difference

What a difference a year makes!

You hear people say that all the time, because in hindsight, problems or circumstances can be completely different in a year. What we don’t often hear is what a difference three years makes. Because that seems like an eternity, and it’s too hard envision all the work that will have to happen between now and three years from now. Can’t it just be a year of work and everything get neatly tucked into place?

God does some of his greatest work in the struggle of the desert. You might not think God is in the desert, especially if you’re relying on your own faculties to get through it. The beauty of the desert is there’s NO way you’re going to feel fed or watered unless you look up to who can provide that. The desert is survival mode for everyone and everything. But the desert is also where God is most relied on and where he’s most desired. I think that’s why he puts us there to be honest.

The desert is for two things 1. developing something within us or 2. releasing something that has a grip on us.

Do we need to develop perseverance, conviction, trust?  Do we need to release control, possessions, pride or something else that’s not helpful? You can’t hold on to unnecessary things in the desert, because if it’s not helpful for survival, it’s dead weight and it has to go. The only thing you can hold on to is Jesus, the desert makes it abundantly clear who you need and where your eyes must shift in order to gain strength and hope.

Three years ago

We would pack up Reagan’s walker and go to the mall. Reagan couldn’t walk straight and being on wheels would sometimes make her push off her feet and go in circles, which she found hilarious. To be fair, it was super cute and funny but it also made me wonder, will we ever be able to walk the mall together? Three years ago she could only walk the length of about four or five stores and we couldn’t go into any stores because they’re not set up for a child in a walker who has trouble going straight. Honestly, my soul hurt so bad to go to the mall when we had to bring the walker. I had to mentally prepare…we will get stares, children will point and look to their parents for an explanation. The parents will look at us and shrug as if to say, “I don’t know what to say, please forgive me.”

Today

Reagan is walking the mall back and forth, going into any store that looks interesting and having a GREAT time. This photo is angelic. Her shadow reminds me that angel armies have been protecting her, God has held her and us while we’ve been in the desert, and as we emerge into a land that has the fruit and riches of hard work, it is different than we expected, but we are here, still on the path God set forth; we didn’t arrive on our own strength or laurels. God paved the way, God gave us the strength so let me credit who it IS owed to so you know what I mean when I say, what a difference three years makes.

If you’re in the desert, please don’t give up. There are things you can only learn and develop within yourself while you’re in the desert. There’s no other place quite like the desert to learn perseverance or trust. There’s no other place quite like the desert to develop the amount of empathy or understanding God would like to see in you. You may want to rush it, but the desert is arduous, designed that way for you to stop trying to fix things on your own and rely on God. This process can’t be rushed and neither can gaining the character traits that are being developed inside of you.

Seasons

Remember, being placed in the desert is a season, being placed in a meadow with flowers is also a season. There’s something to be gleaned from each season of life that God puts you in. I can look back to the harder seasons and while I didn’t love being there, I can be thankful and grateful for what I learned there. Keep going. Better seasons are ahead my friend.

 

Being Different is OK

One Year Ago.

Part 2. Exactly one year to the day.

Do you ever have those moments where your whole heart breaks in two for your child? It’s happened a lot, but this past weekend I realized I needed to up my parenting game on the spot. It wasn’t just any teachable moment, it was a defining moment, a remember forever kind of moment.

Reagan was sent to timeout in her room for pulling and hitting a coworker who was over at our house, she goes to her room crying those hot tears, with her hand over her mouth and screaming because she knows she’s not supposed to do that. And when she realizes those things, this is often the scene.

I️ followed Reagan into her room, which I normally wouldn’t do. I’d allow timeout to happen for a few minutes and then talk to her, but this seemed different. I don’t know why, it just did. Through our conversation I️ asked her a series of questions like, do you know you’re not supposed to do that? (yeah! *tears rolling down her face*) Are we supposed to hit and pull our friends? (NO! *hand over her mouth and head buried in my shoulder*) Would you like it if someone did that to you? (NO! *bottom lip out as far as can be*)

I don’t know how the conversation got where it went next, but Rob and I have talked with her before about this, and she knows and we know that it’s hard for her to control her emotions and her movements due to *insert all the things* here. I remembered that she had used the word different a few times on her talker recently. So I asked her if she liked herself. And her head just fell and her lip was out and she looked me in the eyes and said no and buried her head in my shoulder. She didn’t like herself. She didn’t love herself.

Reagan, do you feel like you’re different? *sniff, sniff, big belly scream* “Yeaaaaahhhhhh!”

My heart broke into a million pieces. First of all she’s telling me this really hard thing to communicate for any 4 1/2 year old. And, I’m so glad she can communicate her feelings, but I hate that this is the feeling she’s having. She answers that things are hard for her. It’s hard for her to communicate and she’s frustrated that it’s hard for people to understand what she’s saying.

She knows sign, but she learns faster than us. There have been a few times when she’s signed and we don’t know what she’s signing.

Most recently it went like this:

Rob: “Are you signing something?”
Reagan: “YEAH!”
Rob: Does Daddy know the sign?
Reagan: “No”

And we proceed to guess what she’s signing until we get it. That time, she wanted a princess story from Daddy. She had just learned the sign for princess one day earlier and it hadn’t registered with us yet.

So in this moment I’m trying to figure out what to say to her impressionable heart and mind as I’m fighting back tears. I tell her “God made you perfect and you don’t need to be like everyone else. Being different is OK, even though it might be tough sometimes.” She wasn’t really loving that idea…so I tried again.

I told her about when she was sick, but in more details. She’s been telling me that she wants to be a Dr., specifically a baby Dr. when she grows up. So I told her some of the Dr.’s that saw her in the hospital were wrong about what she would be able to do. I told her the Dr’s told Mommy and Daddy she would never walk or talk or eat. And they were wrong.

Then I️ explained to her what a miracle is, who is responsible for miracles and that she IS a miracle. Miracles are different AND awesome. She knows God made her and that God loves her. She signs that God and Jesus live in her heart. She’s receptive to all of that. At the end I ask, is it OK to be different? She had mixed feelings about it still, but the wheels were turning about being different and being cool and how they can coexist.

Being different was the theme of the week. We drove to see Christmas lights and pointed out that they were all different, and that they were still beautiful. “Reagan, don’t you see how being different is awesome!?” She was 50/50, not quite convinced.

Having a child who is almost five that has difficulty expressing all of her thoughts, imaginations and dreams is really hard. The other day she used her talker to say “I am mad” and “I am sad.” And she cried as I asked questions that related to the signs she was giving me and what I thought she was saying and all the surrounding events.

Sometimes she wants to say something funny, most recently it was “I like Elf and toilet.” She then smiles with her fingers in her mouth as she laughs and waits for me to get it. Although it took me a little while to figure out, I learned she was referring to a scene in Elf that she finds so funny and wanted to tell me.

Buddy the Elf is different, and so loved. Reagan liked that comparison 🙂

We so badly want her to talk and to communicate with her in any way possible. We are looking to take sign language in 2018 as well as sign her up for more intensive speech therapy. It truly is a blessing to be able to talk with your children and we hope and pray for that continuously. If you think of it, please pray for that as well.

xoxo

just brave enough

Ever feel like you’re just surviving and hanging on by a thread? Yet somehow you muster enough strength to get to the end of the day, collapsing at the finish line, staying asleep there, only to wake up at the beginning of the race come morning?

This feels like my current life stage, it’s my hamster wheel.

But I don’t want to just survive life. I want to LIVE it. I want to notice the beautiful things that each day holds, not just the tasks and goals that are a part of our life. Weighing food, dispensing medicine and working on things with Reagan is part of our daily life. It’s not ALL of our life, even though some days it feels like that’s all our life consists of. There’s more to it and I want to highlight those moments. I don’t want to pretend the hard stuff doesn’t exist, but I want to notice the lovely and be thankful for it.

she’s so proud she can Relevé

Thursday Reagan has another surgery. It will be her fifth time going under anesthesia. She’s not even five. Her g-tube is stuck and no one can get it out so it has to be surgically replaced…surgery is also the safest option we were presented with.

I’m determined to find a way to abundantly live in this reality and not just exist. When Reagan was born and we got her GA-1 diagnosis, I kept saying to myself, if we can make it to five years old unscathed, she’ll be OK. The severity of her disorder goes way down.

And now I wish I had paid more attention along the way instead of walking a tight rope, looking down at the scary things below. The scary things happened and I kept looking down, trying to avoid more bad things that could happen if we were to fall. I fight to be just brave enough so fear doesn’t win the day.

And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. – Hebrews 12:1-2

We are ordinary exhausted  parents trying to do extraordinary things for our daughter who needs us to stand, not collapse at the finish line; she needs us to keep looking up at Jesus so we can show her we are living not merely existing.

Yes, it’s brain surgery. 1 of 7.

These next several blogs are part of a series that I’d recommend be read in order.  I haven’t wanted to post anything recently, and now you will understand why. For a variety of reasons, we decided to keep this information limited amongst a very small circle of people, but now that the picture is largely filled in, we are ready to share our story with you. 


7/12/17
Today a date for my brain surgery was scheduled. Yes you read that right. So saying, “well at least it’s not brain surgery,” unfortunately doesn’t apply from here on out.

For months we’ve been trying to figure out what is going on. Headaches and some other symptoms lead me down an investigatory path to figure out if anything was wrong. I truly thought that when I got the call from my Dr. about my MRI results in April, she would tell me it was nothing and all in my head. But what the MRI in April revealed was what appeared to be a brain aneurysm. So a CT scan with contrast was ordered as a follow up sometime in May.  The CT scan wasn’t conclusive with what the MRI revealed. It was thought that maybe, the aneurysm happened, healed and scarred over, and miraculously figured itself out. My primary care Dr. said this was the best news I could receive and told me I’d experienced a miracle. Miracles aren’t new in our house so I thought, “wow! that’s great!”  If she didn’t tell me to follow up with a neurosurgeon, I’d probably have left it at that.We’ve since learned that an aneurysm happening and miraculously figuring itself out would be considered extremely rare, but as you know, we basically live our lives in the extremely rare zone.

We met with a neurosurgeon on June 1st and were prepared to get the information that the lesion had figured itself out and there was no need to worry. But what we got was the complete opposite.

During that meeting the Dr. said it was either an aneurysm or a tumor and that more testing was needed, a cerebral angiogram to be exact, and he prepared us that an invasive brain surgery could be in the near future depending on the results. He wasn’t sure what the lesion was, and stated it had “a very unusual presentation” and that it needed to be treated due to the size and location. The goal of the angiogram would be to provide more concrete information so that the treatment plan was clear.

Rob and I left that meeting in complete shock and disbelief that this was the path we were on. We were not prepared for that meeting and walked the parking lot in a daze toward our car. I remained on edge and freaked out for my upcoming angiogram b/c they go in the femoral artery and I would be awake! For the angiogram, my Dr. gave me a cocktail to help relax me but it was WEIRD. I remember everything and then I had the bright idea to open my eyes mid procedure and looked at the wall of monitors (eight monitors to be exact) and it looked like star wars was happening on the screens, except it was the arteries in my brain and the dye going through them. It looked insane.

Unfortunately, the angiogram didn’t confirm an aneurysm either. We brought in another Dr. for a second opinion and learned that the surgeons had already consulted with one another. It appeared that whatever the heck was in my brain was a mystery to two very well trained neurosurgeons, trained in diagnosing and treating both tumors and aneurysms. Because I sought a second opinion and these Dr.’s were already communicating, they began working in tandem discussing my case and sharing results and information.

One final test was ordered, another MRI, this time with and without contrast to hopefully provide more insight and a clearer answer. My MRI was done right before we left for California; the second opinion Dr.’s office called me on our way to the airport. His assistant read verbatim his notes of the MRI: “I’m actually more concerned it’s an aneurysm based on some sequences.” and that’s what we headed off onto our 10 day vacation with.

While on vacation the primary surgeon contacted me with a much more detailed report of the latest MRI. He said that the lesion lit up and took up contrast, meaning that there was blood flow and it could be “churning” a clot and that he was leaning toward it being an aneurysm but still wasn’t 100% sure, and didn’t leave out that it could be a tumor. He recommended surgery b/c at this point all the tests had been done and the only way for a definitive diagnosis was to perform brain surgery.

The risks of not doing the surgery would be the aneurysm ruptures. Not good. And if it’s a tumor, it could grow. Also not good.

The risks of doing the surgery are low at 3-4%, but they aren’t pretty and include the need for a blood transfusion, stroke, seizure, weakness, paralysis, risks associated with anesthesia.

Here’s what the brain surgery will entail:

  • An incision on the right side of my head
  • The Dr. will pull the skin back
  • Remove a portion of my skull (I’m literally dying as I think of this)
  • And then either clip the aneurysm or remove the tumor
  • He’ll put everything back together (with staples) and add a fun titanium plate and I’ll be in the hospital recovering from my “craniotomy” for at least three days.

Guys, these are all the facts and information that’s been thrown at us and have been swirling around since I heard the word aneurysm and learned what that might mean. But want to know how I feel?

Terrified.
Worried I won’t wake up from surgery the same, based on my experiences with Reagan.
Hopeful my symptoms are relieved.
Calm, knowing God has my life in his hands.
Freaked out for my friends and family.
Consumed in thoughts about how Rob must be feeling.
Questioning God. Wondering if it’s me that needs to learn something or if it’s someone else who needs to benefit by watching our family walk through yet another difficult and rare circumstance.
Stressed out.
At peace. Knowing there’s a reason this is happening.
Annoyed that I may never know what the reason is.
Wondering. How this will impact our future with Reagan, with each other, with work. Will it be a big deal, will it not?
Reactions of other people. People generally have good intentions but words can fall flat and dust up disappointment that I’m all too familiar with.
Sharing. Vacillating between how much to share, when and how. Wanting to give God the glory during a really difficult time and figuring out how to do that.

At this point I’m waiting. Waiting for July 31. Between now and then I have an EEG, pre-op stuff to complete, five closings and I HAVE to get my hair done. The recovery time is six weeks and my surgery is just days before my next hair appointment so I moved it up. B/c there’s no way I’m allowed to have dye and highlights all up in my wound (shudder) that’s just so gross to me. I don’t know how long the healing takes but I need to make sure my hair is at least on point.