The Diagnosis

We are all vaguely aware that life can change in an instant, a heartbeat, a blink of an eye. In the backs of our minds, we know we’re one car crash, one decision, one diagnosis away from a completely different life. Yet, we don’t want to live in fear of the unknown, so we subconsciously suppress this truth until the day it smacks us in the face.

My story begins on the very day that I was blindsided; June 24th, 2018. Our family had just returned home from a beach vacation in South Carolina. Photo from our last night at the pier:At the Pier, Myrtle Beach

It was a Sunday. My husband, Josh, and I were doing housework while our four year old was teaching our one year old the best way to play with Play-Doh at our kitchen counter. It was such an ordinary moment, and we’d had a hundred others just like it… until I felt a horrible sensation rip through the nerves in my left arm. I told Josh, “my whole arm just went numb.” He asked if I was okay, and I could only respond “no” in between screams.

My skin felt like it was trying to harness golf balls moving wildly in my veins. Pain was everywhere; my neck, head, ear, ribs, and arm; all on the left side. Just when I thought it would never stop… it did, just as suddenly as it had started.

In an instant, I could hear again. My kids were crying; they were scared. My husband was on the phone with 911. I was kneeling on the kitchen floor, staring at my left hand.

It’s a funny feeling when your body moves without you telling it to. In an odd way, it felt like I had been betrayed by my best friend. My mind and body had been together forever, my mind knew my body better than anyone, and my body always did what my mind told it to do. Except for today. Today my body acted on it’s own accord, without any direction. It was terrifying.

By the time the ambulance arrived, I was already reassuring my frightened boys that mommy was just fine; “my arm just hurts and I need a doctor to look at it.” When I reflect on this moment, I often laugh at how ‘mom instincts’ tend to take over. Here I was, in the middle of the most terrifying moment of my life, and my need to protect and reassure my children was stronger than the fear I had for myself, or what was to come.

But, the second I stepped into the ambulance, I became the child, and the trained medical team did their best to explain what was happening, and keep me calm.  “It could be a stroke, but more than likely, it’s just a pinched a nerve,” the EMT had said. It was easy to believe him. I had never been a ‘sick’ person.’ Sure, I’ve had colds, but I’ve never been to the hospital, except for giving birth to our babies. I’ve never even had a cavity!

By the time we arrived at the hospital, I felt incredibly silly being wheeled in on a stretcher with my purse in my lap. As I was being steered down the long hallway, I caught the eyes of a young girl sitting in a hospital bed. We looked at each other for what seemed like a long time. Her face was full of worry. She had been crying. I couldn’t help but wonder what her story was.  Looking at her made me feel a bit embarrassed for rushing into the ER over a pinched nerve when there were people who needed those beds for more serious things. My thoughts were interrupted as my own bed took a turn and I was settled into a room nearby. Later, I wondered if she had the same thoughts about me.

Within minutes, I was being questioned, poked and prodded. Josh showed up sooner than I ever thought possible, having taken our boys to our neighbor’s house, and was sitting with me while we talked to a neurologist via video conferencing (thank you, Technology!).

When asked to explain the incident, I felt the same sensation tear through the left side of my body. This time, without my children present, and the hospital noises, smells, and sounds around us, a harsh reality started to sink in. Something was seriously wrong.

Screams and tears were pouring freely, and my arm was moving wildly on its own; I couldn’t control it. The hospital staff began to scramble, and medicine poured into my veins through an IV. Again, the episode stopped as suddenly as it had began, but this time, the hospital staff had seen it, and, they had suspicions of what was going on.

Over the next several hours, I was subjected to test after test, and answers began to come. First, seizure activity was confirmed. Then, we were told about the brain tumors; “several.” Finally, for the first time, we heard the word Neurofibromatosis II.

Although this news was detrimental, all I could do was laugh. I laughed so hard I cried. Were they sure they had the right scans? I couldn’t even pronounce the word; ‘Neurofibromatosis.’ I told the neuro that he had to be wrong; afterall, the EMT had assured me this was only a pinched nerve.

MRI - Tumors

Despite my inability to comprehend what was happening, I was admitted for further observation. My husband never left my side. He made all of the right phone calls, asked all the right questions, and let me fall asleep that night in ignorant bliss, thinking there had to be some sort of mistake.

I was woken up he next morning for a blood draw. The lights were turned on for visibility, and Josh was laying on the hard couch in the room. His eyes were open. We stared at each other until my blood had filled 4 vials, and the phlebotomist left the room.

Then, Josh said said the 5 words that made everything true; “it’s going to be okay.”

That was the moment I realized this was not a dream. It was real. I had Neurofibromatis II; a diagnosis that would change my life. I wasn’t quite sure yet exactly what was going to change, but I knew it was big.

I’ve always believed that although we don’t get to choose what happens to us, we do get to decide how we react to it. These are the moments that define us.

This is my story. And it is just getting started.

Through a Child’s Eyes

It’s normal for children to have boundaries. Don’t touch the stove; be careful going down the stairs; look both ways before crossing the street; chew with your mouth closed; pick up your shoes and take them to your room.

But, in our house, our children have to abide by an extra set of rules. No loud sounds in the morning, until my medicine kicks in. Hold my right hand, because I can’t feel the left. Don’t scream in my ears. And, don’t ever, ever, ever hit mommy in the head. 

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Part of me is grateful that my 5 year old knows what to do if there is an “emergency.” Another part of me feels like his childhood is being robbed from him.

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Then, last week, something happened that completely changed my perspective.

I went to the grocery store alone (a rare occurrence). I was bagging ears of corn when a 5 year old boy that I’d never met before came right up next to me and struggled to reach the bags. Just like I would help my own son, I pulled the bag down for him, and held it so he could load 6 ears of corn into it. He smiled, and thanked me “so much.”

Then I turned around and watched him walk back toward a woman who was holding a walking stick; she was blind, and holding the hand of a small boy who looked to be about 2 years old. They had a red wagon full of groceries. 

After he placed the heavy bag of corn into the wagon, I watched as his mom whispered another order to him, and off he went, to the leafy lettuce.

There are so many parallels here. Most obviously, the boys; they were the same ages as my own. I also felt connected to the mom; grocery shopping with 2 boys is hard. Doing it with a disability is even harder! 

Without hesitation, I pushed my cart to the side of the aisle, and walked over to the boy. “What else do you need? Can I help you find something?

He smiled so widely, and said he was trying to find kale. I asked his mom if she wanted organic, and then helped them check every other item off their list; spinach, cantaloupe, raisins, carrots.

When we finished, I said “it’s so nice of you to help your mom!” He shrugged nonchalantly, waved goodbye, and began to guide his mom toward the check out aisle.

I watched them walk away, and couldn’t keep the tears from pouring down my face.

Through that little boy’s eyes, nothing out of the ordinary happened at the grocery store. And, while I’ve been struggling with the harsh reality my kids are facing, they likely don’t think it’s out of the ordinary to be cautious of hitting my head, or play quietly when my head hurts.

hats

I still hate that my children have seen their mom having seizures, taken away by ambulance, and in a hospital bed. But, they’ve also seen me overcome.

They’ve seen how their daddy stepped up to take care of us when mommy couldn’t, and how family comes together in times of need. They met the doctors who cared for me, and saw how important it is to take care of our bodies. They’ve seen what unconditional love looks like. They saw healing, and they learned compassion.

Everyone needs help every once in a while, and everyone faces challenges. The sooner we teach our children that, the better.

This is our story, and it is not over yet.

 

 

 

 

 

 

My Ponytail

I wore my hair in a ponytail the other day. A ponytail! While this may be an everyday occurrence for some people, it was a major milestone for me.

It’s now been 6 months since my last craniotomy.

After surgery, my recovery was so gradual that sometimes it felt as though I would never get better. At timesit even felt like I was getting worse because progress was so minimal from one day to the next. I had never been so physically broken.

Then, months after surgery, I started to realize how much progress I had actually made. There were several milestones, and they started small; the first time I held my own head up for an hour; the first time I stood up after surgery;

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Even coming home from the hospital was a celebrated milestone. Then, the first time I walked to the bathroom without the cane; the first time I slept through the night; the first time I went an entire day without a nap or pain medicine; the first time I was able to hold my kids;

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Then the milestones became more spaced out; the first time I was able to drive again; the first time I did 10 minutes of physical activity (running in place); the first time I was allowed to get on an airplane; the first time I could tolerate wearing a hat, and the first time I was able to submerge my head under water;

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But, until just recently, I still hadn’t been able to tolerate wearing my hair in a ponytail.

When it happened, it was completely unintentional. I’d had a long day at work, and was washing the make-up off of my face. My hair clip had gone missing (a common occurrence in a household with 2 toddlers who “borrow” anything that looks remotely interesting). So, instead, I grabbed a black hair tie from the bathroom drawer, and awkwardly pulled my now short hair into a tiny ponytail.

Then, my boys came running in like whirlwinds. As always, they needed milk, water, a stuffed animal, books, and help brushing their teeth before bed.

Nearly an hour passed before I realized my hair was still in that tiny ponytail. I went to the mirror and looked at my reflection. I smiled. Another milestone. Another small reminder of the progress I continue to make.

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I am not fully healed yet. But, that pony tail promises that one day soon, I just might be. 

This is my story, and it is not over yet.

Scanxiety

It starts in the pit of my stomach; every time I have tinnitus, every time I lose my balance, every time my eye twitches. And when my headache starts to feel a little bit worse, it’s like I can picture the tumors growing. Or even worse, what if there’s a new one??

The feeling intensifies while I’m in the MRI machine; ear plugs inserted, pads on either side of my head, an IV in my arm, and a cage over my face to hold me perfectly still while unnaturally loud sounds bang obnoxiously around me.

It heightens every passing day after the appointment; constantly checking my phone, waiting for the news with curiosity of the images that were formed, and anxiety of the story they will tell.

Scanxiety.

Those of us with brain tumors live on the ever present edge, hoping, praying and waiting to hear the words “I have good news,” and powerfully fearful of getting a phone call that says otherwise.

Thankfully, this time, all of my specialists were in agreement; first my spinal specialist, then radiology, and finally my ENT; “no growth,” “stable” and “good news!”

Every time we hear the words we are hoping for, relief and gratitude flood my body. I think, “Safe (for now)!”

Although it is a huge success, we know it’s not permanent.

In 3 short months I will repeat the MRI process, hoping and praying for the exact same results.

In the meantime, I’m making the most of the next 3 months, because every victory is worth celebrating, no matter how small, for as long as we possibly can!!

This is my story, and it is not over yet.

Meningiomas and Menopause

I think all of us are equipped with instincts as children that give us hints of who we will one day be. For some, it could be a draw to medicine, animals, science, sports, etc.

When I was a child, I always knew that I would be a career woman, and a mommy.

I was lucky enough to have 2 beautiful pregnancies that resulted in 2 perfect boys:

(They may look similar, but those are actually 2 different babies that both look exactly like their daddy!)

When I was pregnant with our last baby, we knew he would be our last. My husband and I had always envisioned a life with 2 children, and we are beyond blessed to have fulfilled that dream.

Shortly after I finished nursing our youngest baby, I began having seizures that lead to the discovery of 23 tumors in my neurological system and a diagnosis of Neurofibromatosis II (NF2).

After having 2 craniotomies to remove meningiomas, we learned why the symptoms showed themselves so suddenly; the same hormones that created those babies had actually caused my tumors to grow as well.

In hindsight, I’m so glad that we didn’t know of my diagnosis until after I had given birth to those boys. Otherwise, I know that we wouldn’t have them. 

Every time we hear the dangers of pregnancy for NF2 patients, it reinforces how lucky we are to have completed our family… and even luckier that neither of our boys inherited my genetic disorder.

After surgery, we began to consider our options for long term care. My oncologist was the first to teach me that chemotherapy comes in many forms. I’d assumed it would be like what I’ve seen on Grey’s Anatomy; a sickly person with no hair in a cold chair, hooked up to an IV for hours. 

Instead, my first round of chemo is a light drug called Lupron. It is easily given by a quick injection, and works by killing my ovaries, and therefore eliminating all of the hormones from my body. The idea is that we may be able to starve my meningiomas by cutting off the hormones that feed them.

So, in February of 2018, I finished nursing our last baby. And, in February of 2019, I started going through menopause. That’s right; the injections have put me through medically induced menopause at just 32 years old.

Hot flashes. Irritability. Weight gain. Hot flashes. Sleeplessness. Forgetfulness. Hot flashes. Headaches.  Did I say hot flashes?

Thank goodness this Spring in Colorado has been cold enough to help me maintain my body temperature!

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I debated sharing this picture, because if you look closely, you can see a chunk of new hair flying straight up. It is something I am so insecure about; a small, yet ever present reminder of the brain surgery I had just 6 months ago.

But, I’m sharing anyway. Because there are pieces of this journey that are not pretty. There are pieces that do not lie down exactly how we want them to, and that’s okay.

Those are the pieces that remind me how far I’ve come since my diagnosis just 10 months ago, and they continue to motivate me to keep pushing through the inevitable hard days.

This is my story, and it is not over yet!

**To those of you struggling with fertility, those who are unable to have children due to medical complications, and those who have children with genetic disorders, our hearts and prayers go out to you!**

Bombs & Brain Tumors

At the center of our humanity is a need for connection, and I am a firm believer that God gives us the people we need in our lives, at just the right time. 

20 years ago, God put Bekah in my life. 15 years ago, He made us best friends.

 

Exactly 6 years ago today, He nearly took her away. She had been standing less than 3 feet away from the first bomb that went off, at the finish line of the Boston Marathon Bombing.

10 months ago, the day I was diagnosed with Neurofibromatosis II, she was the first person I wanted to call. She was the only person who would understand. But I couldn’t. 

I knew that if I called her, I would just cry, and I wouldn’t be able to get words out. So, I texted her…

“I was taken to the hospital in an ambulance last night after an episode at home… Apparently a headache I’ve been experiencing for the last couple of days is serious. A CT scan showed multiple brain tumors, one of which is causing seizures on my left side. I was admitted and am having a MRI done this morning and then developing a plan with a neurosurgeon. We definitely need to remove the tumor; it sounds like I will go into surgery sometime tomorrow. I’m so sorry.”

I apologized at the end, because I knew exactly how she would feel after reading it: the same way I felt upon learning that she’d been blown up by a bomb. 

Her next message was plain and simple, “I’m getting on a plane today. I love you.

Upon learning of my condition, there were several people who jumped on flights, and in their cars to get to Colorado, but Bekah was the first one to arrive. She even beat my dad and stepmom by a couple of hours!

As soon as she walked into the hospital room, she jumped right into bed with me, and both of our eyes filled up with tears.

Neither of us needed to say anything; she knew exactly how I felt, and I knew exactly how she felt. I’d grown accustomed to seeing her in a hospital bed, and she’d gotten used to me visiting… neither of us expected to have the roles reversed.

That night, after all of our visitors left, and the hospital became quiet, Bekah sent my husband home. He knew I was in good hands, and I knew he needed a good night of sleep.

Like any reunited friends do after time away from one another, Bekah and I stayed up talking, laughing, and crying until the crack of dawn. Eventually, she took her prosthetic leg off.

When a nurse came in to take my stats, Bekah joked, “let me move my leg for you.” My nurse smiled comfortably, as only nurses know how to do, and casually asked what happened.

It was a story I had heard so many times before, but that night, something was different as I listened to Bekah talk about how she had been less than 3 feet from the first bomb that went off, separated from her 5 year old child, rushed to the hospital, and finally had her leg amputated due to the severity of her injuries.

As she spoke, I mentally filled in the blanks, remembering how mangled her body had been, how her hair had been singed away by the blast, how she’d endured 67 surgeries, how much shrapnel was still embedded in her muscles, and how many nights she’d called crying. How she’d almost died.

Bekah

But, in true Bekah fashion, she never got lost in the horrific details of that experience. She always stayed positive; stating the facts and how she’s grown as a person because of it.

She said, “Being a victim is a not a choice, but being a survivor is.”

Although that night was like so many others we’d spent together, it will always stand out in my memory. It was the night I decided to be a survivor too. 

When the time came for me to go home to my family, and Bek to get home to hers, she left me with a necklace that said “Be Brave.”

Around her own neck she wore “Be Strong.” It had been given to her as a gift after the bombing. It had come with a match, ‘Be Brave,’ and a note that said one day, she would know who to give it to.

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She’d held onto ‘Be Brave’ for 6 years before placing it around my neck.

I wore it every day until surgery. It was exactly what I needed to overcome my own challenges. Every day I would look at it and be inspired to find the beauty amid tragedy, just as she had.

Brave

After my first craniotomy, the first words I said were, “God is not done with me yet.

If you’ve been following my story, you already know this. What you may not know is that it was a subconscious line that I had heard before… they were the same words Bekah said upon waking from her medically induced coma after the bombing.

In a state of semi-consciousness, we both said the exact same phrase during the toughest moments in both of our lives.

Perhaps it is all of those years of friendship that have entwined our strength together, or maybe, just maybe, those words are true;

God is not done with us yet.

This is our story, and it is not over yet.

A letter to my sons, written the night before brain surgery

July 19, 2018

Dear Meatball & Rooster,

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One of life’s most precious gifts is that it is fleeting. Everything you’ve ever known can change in a second, a minute, or just a few hours.

On Sunday, June 24th, 2018, I had a seizure on our kitchen floor, right in front of you while you were playing together with Play-Doh, and was rushed to the hospital in an ambulance. We found out hours later that I have tumors in my brain, ear canal, and spinal cord, and they’re beginning to show symptoms, requiring surgery.

While this is all very new and scary, my decision to move forward with the surgery is intentional, and I’m doing it because of my love for you. I have so much to fight for, and I need you to know that I am doing this because YOU are worth it.

Boys

As the days have passed, and we draw nearer to surgery, we’ve had the unique opportunity to look at life through a new lens. Everything is different, and yet nothing has really changed at all; we simply have knowledge that we didn’t before June 24th and a diagnosis that wasn’t there before.

I’ve never taken our time for granted, but still each moment seems sweeter now, and its an incredible blessing to experience life this way.

The little things are the big things; watching you sleep, and imagining all of the things you’ll accomplish in your lifetime; taking you to a baseball game; holding your little hand as long as you’ll let me; teaching you to ride bikes; and hearing you giggle. I find myself staring at you often, trying to capture each memory and hold onto it forever.

My prayer is that one day this will all be a distant memory; a thing that happened; a chapter that has closed. Although you are both intuitive, I know that you are too young to remember all of the details of these pivotal moments. But, your daddy and I will remember, and when you’re ready, we will remind you of how these days unfolded, and why we made the choices we did.

I want so badly for this to be a story of strength and triumph that will inspire you to live your best life without fear of the unknown. I want to watch you grow up, and face your own challenges head on. I want for you to see that life is a beautiful thing that should never be taken for granted.

We are never promised tomorrow, and we need to make each day count. There are things that are within our control, and things that we have to leave to faith. So, for now, I am simply trusting that God’s plan is the same as mine.

If there is one thing I can weave within these words and capture here for you forever, it would be my undying, unrelenting, neverending love for you. It is something truly tangible that you have the ability to carry with you long after I’ve left this earth.

Please, don’t ever doubt the power of a mother’s love for her children.

Mom

I love you all the stars in the sky; I love you all the angels in heaven; I love you all of the leaves on all of the trees; I love you all of the fish in the sea; I love you all the raindrops in the ocean; I love you all of the miles to the moon and right back down again.

Love,

Your mommy

 

This is what support looks like

Within a 6 month period (June – December, 2018), I had 37 office visits, over 30 recorded focal seizures, 15 MRI’s, 7 CT scans, 4 hospitalizations, 2 craniotomies, 1 infection, and 1 incurable diagnosis, Neurofibromatosis, type 2 (NF2).  I had 17 Meningiomas (brain tumors),  6 ependymomas (spinal cord tumors), and 1 Acoustic Schwannoma (brain tumor in my ear). And a partridge in a pear tree.

I learned so many things during that period of time. One of them is support comes in many formsI also learned that it changes over time. No matter what form it takes though, a support system is meant to hold you up when things feel like they are crashing down.

Overwhelming Support

Initially, our extended network of friends and family were as shocked as we were by my diagnosis. We were flooded with cards, flowers, well wishes, handmade children’s art, visitors, and more thoughtful gifts than I could count.

Support

During this time, my husband, Josh, and I leaned on everyone. We were all hurting, together. I say “we” because it is not just the person in the hospital bed who needs support. I was fully aware that my diagnosis affected everyone I loved. At that time, they needed my support as much I needed theirs.

Private Support

After a few months, the ‘hype’ of my sudden diagnosis and back-to-back surgeries began to wear off; our meal train ended, and our wide circle of friends and family weren’t checking on us quite as often. During this time, Josh and I learned to lean heavily on each other for support. 

He needed me to be okay just as much as I needed him to push through all the medicine my body required to beat the infection. The infusion process took about 30 minutes, and it quickly became our daily reminder that we were fighting this battle together. 

Picc Infusions

In addition to taking care of me, and my PICC line, Josh also took on all of the parental responsibilities and housework we had previously shared. He bathed our crazy babies, made them dinner, picked them up from school, and put them to bed. He did all of our laundry, grocery shopping, fed the dog, and took me to appointments. It was like he was a single dad who had 3 kids (me being one of them)

When Josh had to go back to work, things changed again. I was still vulnerable and unable to take on my share of our daily responsibilities, and he could no longer do it all.

Balanced Support

That was when we realized we couldn’t do this by ourselves; we needed help.

During this time, Josh and I learned to lean on those who love us most.

Grandparents to the rescue! My mom-in-law stepped in immediately to help with our boys, take me to appointments, and make meals. She was available at the crack of dawn, and as long as I needed her until Josh got home from work at night. She offered irreplaceable love, and both physical and emotional support.

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My dad and step-mom also recognized our unspoken need for help, and flew in from Kentucky to offer reinforcement, at just the right time! They stayed with us for nearly 2 weeks, and did everything that I couldn’t at that time, allowing our boys to maintain normalcy in their own home. 

I remember waking up late one morning. I grabbed for the baby monitor and realized it had been silenced. I listened, and heard the most amazing sound in my house: normalcy! My dad and step-mom were playing with our children, and feeding them breakfast. Coffee was brewing; the smell reminded me of when I was a child. Those moments were the most healing. We were not alone.  

I’ve always said that having an amazing support system was critical to my recovery. Now, you know why.

We got through it. Together.

This is my story, and it is not over yet.

I want to take a moment to extend a heartfelt THANK YOU to every person who had said a prayer, sent flowers, made gifts, visited, brought meals, or wished us well throughout this process. We are so blessed to have the support system we do, and forever grateful.