family – Craniotomy Me

Choose Hope.

June 24, 2019June 24, 2019 CraniotomyMeg

“You have a choice to make,” my oncologist said last week. “We can wait another 3 months, do another set of MRI’s and then make a decision, or we can treat aggressively now, knowing that tumors in NF2 patients are known to grow over time.”

Let’s be real. Neither of these options sounded great;

Wait for the tumors to grow, and then react.
Proactively treat tumors that will inevitably grow.

I also knew I had a third option; 3. I could do nothing. I was just starting to feel ‘normal’ again after being diagnosed with NF2, and having 2 back to back brain surgeries. I missed life before my diagnosis.

But, pretending as though the tumors are not there will not make them disappear. Doing nothing will not give me more time with my family.

So, I quietly dismissed the idea of doing nothing, resolving myself to do something, and listened as my oncologist explained the pros and cons associated with Hydroxyurea.

It is a pill form of chemotherapy that I can take at home, without needing intravenous infusions. It works by slowing down rapidly growing cells, which could potentially keep all of my tumors at bay.

I asked my oncologist, “if it were you, which option would you choose?” He replied, “I would start taking it immediately.”

So, after a lot of research, and lengthy conversations with my medical team, I’m choosing to fight. I choose hope.

My oncologist put the order in for the chemo pills, and a heavy duty anti-nausea medication.

I will begin treatment today, June 24th, exactly 1 year from the day I was hospitalized for seizures and diagnosed with NF2.

I will need to go in for lab work once a week to be sure my body is strong enough to withstand the medication. The drug can make me nauseous, lose the little hair I have left, lower my already weakened immune system, make me feel extremely tired, and experience flu-like symptoms.

But, more importantly, it gives me a chance to fight my tumors and diagnosis while still continuing to live my life; I can still hold my kids, walk my dog, drive a car, go to work, and get in the ocean when we go back to the beach.

So many things have been controlled by NF2 over the past year; but choosing hope over fear is something I am very much in control of.

My kids may see me THROW up, but they will never see me GIVE up.

I don’t know yet what this chapter looks like, but this is still my story, and it is not over yet.

A day in the life of a mom (with brain tumors)

June 19, 2019June 20, 2019 CraniotomyMeg

5:45AM. Crying sounds coming through the baby monitor. Why is our youngest always awake before the sun?

5:46AM. Upon being pulled from his crib, our youngest hastily demands his dad (who has already left for work), orange juice, a potty break, a new pair of pants, and a phantom toy that I am not sure exists. I raid the medicine cabinet for my various morning medications before the screaming can escalate.

5:47AM. Too late; my youngest is screaming like a banshee over the toy that does not exist. I pray that my medicine kicks in quickly.

6AM. My youngest finishes throwing a major tantrum and wants to “snuggle” and say “I love you mommy.” So I cave, and forgive him for screaming like a banshee over the toy that does not exist.

6:30AM. Time to wake my oldest. I need coffee. He hates to be woken up for school.

7:00AM. We’re going to be late. Everyone out the door! I fasten 2 grumpy children into their car seats to contain them while I pack lunchboxes, vitamins, a backpack, a diaper bag, and snacks for the 5 minute car ride.

7:05AM. I pull out of the driveway but realize I forgot my laptop (or phone, or lunch, or coffee, or homework, or something equally important).

7:10AM. I pull out of the driveway again while trying to explain to my 5 year old that yes, he will have to brush his teeth every morning for the rest of his life.

7:30AM. Drop off child #1; whichever is the loudest while navigating out of the neighborhood is the one who gets dropped off first.

7:45AM. Drop off child #2.

7:46AM. Listen to the sound of quiet, take a deep breath and a drink of coffee. Is it normal to feel like you’ve run a marathon before 8am?

7:47AM. Call dad while driving to work.

12PM. I usually use my lunch break to review my most recent lab results or call Neurology, Oncology, or another equally important specialist, to schedule my next appointment.

2PM. My youngest child’s school calls. He’s coughing uncontrollably. Seriously, where was that cough this morning? I explicitly remember screaming… but no cough.

2:30PM. I arrive at school to pick up my potentially sick boy.

2:45PM. I call our pediatrician because my baby truly is coughing like crazy and sounds like he has croup. Again.

3:30PM. Pediatrician confirms my sick boy does, in fact, have croup. Again.

3:45PM. I call my husband to tell him we have a sick boy. Again. He knows the drill. He’ll get Pedialyte, Eucalyptus, cough drops, and more Motrin on his way home.

4:15PM. Watch Aquaman for the 106,715th time while holding sick boy in left arm, and replying to my remaining work emails with my right.

5:15PM. Time to pick up my oldest.

5:17PM. Our oldest flings his shoes off in the car and one misses my head by an inch. I explain, once again, that it is not nice to throw things at anyone’s head, especially mine.

5:40PM. I’m starving (did I even eat lunch?). I throw a protein and veggie into the oven and begin The Dinner Countdown.

5:50PM. “It’s almost dinner time, boys!”

5:55PM. “Come and eat, boys, it’s dinner time.”

5:56PM. “You better come eat or it’s going to be cold.”

5:57PM. “Can anyone hear my words?”

6PM. I finally herd our children to the dinner table – success! But, then my husband walks in the door, and they both abandon their plates to attack him with hugs (can’t even blame them).

6:15PM. Both boys want snacks. So badly, in fact, that they’ve dumped an entire bag of veggie straws onto the floor. Why do I even bother making dinner?

6:30PM. Bathtime. I listen to my husband (try) to contain our children in the tub while I pick up rogue Legos (because those things hurt when you step on them), and socks. How many pairs of socks do 2 little boys wear in a day?

7:15PM. Bedtime. My husband and I split forces; it’s best if we split up. I take one kid, and he takes the other. We turn into human servants while we retrieve water, read books, brush teeth, kiss all of their owies, and tuck them in.

8:15PM. Bedtime. For real this time.

8:30PM. Once we’ve ensured both boys are snoring in their beds, my husband and I get to relax. We chat about our day while packing lunches for the next, and then watch a TV show together.

9:30PM. The last thing we always do before we fall asleep is say, “I love you.”

…If you’re still reading it’s because you can totally relate to the busy life of a working mom, or you’re waiting for a dramatic line about having a stress related seizure, or an unbearable migraine.

But, the truth is, most of my daily challenges are toddler-related, not tumor-related.

Sure, I take more medicine than most, and have to be more conscious of things flying at my head than most, but having tumors does not consume my day. My family consumes my day.

In the title of this blog, “A day in the life of a mom (with brain tumors),” I put “with brain tumors” in parenthesis to make a point; I am, and always will be, a wife and a mom, and so many other things before I am someone with brain tumors.

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

Through a Child’s Eyes

June 4, 2019June 5, 2019 CraniotomyMeg

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.

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.

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.

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

May 13, 2019May 13, 2019 CraniotomyMeg

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 times, it 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;

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;

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;

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.

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.

Meningiomas and Menopause

April 24, 2019May 20, 2019 CraniotomyMeg

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!

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!**

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

April 9, 2019April 9, 2019 CraniotomyMeg

July 19, 2018

Dear Meatball & Rooster,

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.

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.

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

April 2, 2019April 3, 2019 CraniotomyMeg

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 forms. I 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.

Nannie

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.

Appearances

April 2, 2019June 10, 2019 CraniotomyMeg

Physical appearance is exactly that; an appearance. And, appearances can be deceiving, especially when there is so much that lies beneath the surface.

Many conditions are completely invisible to those not experiencing them first-hand. Neurofibromatosis II is often one of them.

After having my second craniotomy, I didn’t want to be labelled or defined by a diagnosis, or as a ‘sick” person, so I put a lot of effort into my appearance; making myself look “fine” on the outside.

I covered my PICC line with a long sleeved shirt, used makeup to hide the dark circles under my eyes, and cut my long blonde hair short to help blend in the multiple bald spots that had been shaved away during surgeries. I even learned to style it just right so that the majority of my stitches were covered.

In hindsight, my efforts were a bit vain. But, my appearance was one thing I felt as though I still had control over, when so many aspects of my life and health were spiraling out of control.

The truth is, you can’t see brain and spinal tumors on the outside. You can’t see exhaustion, brain inflammation, dizziness, or tinnitus. You can’t see remnants of seizures; numbness and tingling. You can’t see pain.

Part of me was grateful that strangers, co-workers, and even my own children couldn’t see all of the symptoms that were laying right below the surface. “You look great!” they would say. And I let them believe that I was great.

Another part of me wanted to wear a t-shirt that said something like “fresh out of brain surgery” so everyone would understand.

I remember walking into a neurology appointment one afternoon, just two weeks after surgery, with high hopes of having my stitches removed that day. It was one of those days; I’d had a migraine, and a hard time getting out of bed. The hour long drive to the medical office has zapped all energy I had left, and my body was physically shaking as I walked from my mom-in-law’s car to the building (she was kind enough to chauffeur me when I couldn’t drive). I actually wondered if I might pass out before I got to the door. A man was walking in ahead of us, but my legs weren’t moving fast enough. He glanced back, saw that I looked “fine,” and let that heavy door shut right in my face.

It was the first time that I wanted to scream “I just had brain surgery!!” How could he not see the pain I was in, and how much I was struggling?

What I didn’t realize at the time, was that there would be many more moments when I wanted to scream and shout until everyone ‘got’ it.

There would be moments at work when I would cry in the bathroom because a sudden migraine had hit, and I couldn’t open my eyes against the light over my desk; there would be moments when I had to hide from my children because their normal sounds would make my head pound.

I was not fine.

My brain had just been tampered with – twice in 3 months. A portion of my skull had been removed, and was now being held in place by 5 titanium ‘snowflakes.’ My scalp was held together by thread. Just to get out of bed each morning, I required a handful of medications and an IV infusion to keep the infection from coming back.

I took roughly 25 pills per day, had a home health nurse who cared for me, and relied on my husband to push antibiotics through my PICC line multiple times per day.

One day, I would be “fine” again, but for now, I was broken. And that was okay.

True healing takes time. Although I’ve never exactly been patient, I knew I owed it to myself to take the time I needed. Eventually, I knew healing would come, and when it did, I would hold the door open for every person behind me, even if they appeared to be “fine.”

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

Surviving

March 15, 2019November 9, 2019 CraniotomyMeg

Surviving is more than your heart beating in your chest, the breath in your lungs and a functioning brain. It means choosing to see beauty through ugliness, and finding hope on the bad days. It also means allowing yourself to acknowledge that not every moment can be perfect; the bad days are inevitable.

Brain surgery is hard. It’s tough on the person having their skull removed, and for the person in the waiting room. My husband, Josh, and I have learned to lean on each other; when I am weak, he is strong for us both; and when he struggles, I hold us up.

A few weeks after surgery, Josh told me, “everything they do to you, I’m doing to me.” That day, he had a replica of my incision tattooed on his own head.

When he was done, he came home and proudly showed me his tattoo, still covered in plastic and red from irritation. He said, “Now I have an idea of what you feel like all the time.”

What an honor it is to be loved by someone like that. His compassion filled me with purpose during some of the toughest days of my life.

Most people don’t know it takes several weeks for anesthesia to really wear off after a major surgery like that. Once the anesthesia fully left my system, my body realized something was seriously wrong. My lymph nodes were swollen, I ran low grade fevers all the time, and pain radiated from my incision. I couldn’t even turn my head from side to side because the pain would shoot up toward my incision, and crawl down my neck. There were many days that I couldn’t even get out of bed.

I was re-hospitalized three weeks after surgery, and misdiagnosed with Shingles. There was no other explanation as the CAT scan showed no sign of infection, and I didn’t have any traditional signs of infection (redness, or high fever).

I had never had brain surgery before, and after the doctor sent me home, I thought maybe that kind of pain was normal after a craniotomy. Maybe I just needed to be patient and get used to it. So I tried.

I tried for eighty two days after surgery to ‘get used to it.’ I went back to work, began cooking for my family again, went to a wedding, took our boys to the Punkin Chunkin festival, watched them ride bikes down our street, and even drank a glass of wine with a couple good friends (doctor approved).

No matter how much pretending I did, or how seemingly ‘normal’ I appeared to look, I knew that something just wasn’t right. I’ve always believed in trusting your instincts, and I finally decided to trust mine; I saw my neurosurgeon after discovering a swollen welt near my incision.

I’m including a photo because if you’re a fellow NF2’er, or have ever had brain surgery, I want you to get to your surgeon if you ever experience this;

During that visit, my surgeon asked if I was comfortable undergoing another surgery to “explore the area.”

My first reaction was, “hell no.” Were there any other options? I was terrified of going into the Operating Room again, knowing what could happen, and how tough recovery is.

But, then I remembered a promise that I had made while I praying profusely for my children not to have NF2; I had said over and over and over that I would graciously have a thousand tumors and surgeries if it meant my kids didn’t have to have one. Although I know we don’t make deals with God, I felt compelled to stay true to my word, and my second surgery was scheduled.

Later, we would learn that hesitation or delay could have cost me my life.

This time, with surgery just one day away, I didn’t have time to go on a nice weekend getaway with Josh, or take our boys to do fun things before surgery. I had just enough time to call my family, pack a bag for the hospital, and make arrangements for our kids (I seriously have the best mom-in-law ever).

The morning of surgery, just 2 days before my 32nd birthday, Josh and I took our boys to school and did our best to pretend it was just like any other day. My surgeon had told us that he wasn’t 100% sure what to expect on the day of surgery; we had been told to prepare for a 15 minute outpatient procedure, but knew it could be longer depending on how things went. We decided to think positively, and didn’t want to scare our kids, so we told them that I just had a doctor appointment. I squeezed them tight, kissed their faces, and then Josh and I headed straight to the hospital.

This time, when my IVs were inserted, and my surgeon came in to sign his initials on the right side of my forehead, it felt a bit like deja vu. He discussed the risks with us again, introduced us to an anesthesiologist again, I signed the paper on the clipboard again, and then it was time to go. Josh and I prayed with our good friend, and then we kissed goodbye.

This time, when the mask was put over my face, I welcomed sleep, thinking I would wake again in a mere 15 minutes. I was wrong.

Sometimes, surviving is hard, but it is always worth it.

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

Two Miracles

March 10, 2019November 9, 2019 CraniotomyMeg

Leaving the hospital after having my first craniotomy was very similar to leaving the hospital after having my first child. I was terrified; I was in pain; I had a new incision (rather than a new baby); and I had no idea how to take care of it.

Before my diagnosis of Neurofibromatosis II (NF2), before brain tumors, before craniotomies and seizures, I was a very normal person. On any given weekday, I took my boys to school, worked a full day, and made my family dinner. I had been an active person, not just chasing toddlers, but going to the gym, advancing my career, going on family bike rides, and escaping for weekend camping trips.

After surgery, everything was different. I needed help with everything. My husband, Josh, poured my water, dispensed my medicines, helped me to the bathroom, and so much more. Light was intolerable and sounds were excruciating. Even the sound of my own voice was enough to make my head pound. My whole left side was numb and tingling, making it difficult to walk; I left the hospital with a cane that I relied upon to keep me upright. My daily goal after surgery was to hold my head up for 30 minutes a day.

Despite all of the tough adjustments, the hardest thing I’ve ever had to do as a mother is prioritize myself. Having brain surgery temporarily forced me to take a backseat in the daily lives of my children and focus on my health. My husband took care of me, and his mom took care of our kids. She was able to provide them everything that we couldn’t during that time; routine, consistency, and more support than we could have asked for.

Slowly, I made progress. Every day brought small triumphs. After a week, I ventured outside for the first time, and sat in our driveway for a whole hour, watching our boys play and eat peaches.

After two weeks, I was able to sit in a shaded pool chair for two hours. I couldn’t get in the water, but I could watch our boys splash each other, and smother sunscreen onto their bare skin.

After three weeks, we went out for dinner for the first time;

After five long weeks of healing, my weight restriction was finally lifted and my neurosurgeon agreed it was safe to hold my children. I hadn’t held them since surgery. Think about that one for a moment… I had a 1 and 4 year old, and I couldn’t put the baby in his high chair or crib; I couldn’t lift them into their car seats; I couldn’t pick them up off the sidewalk when they fell down; I couldn’t even let them play monkey on my legs.

The second that changed, I couldn’t wait to get them both into my arms… and it was worth the wait! I went straight to their school after the appointment, and nearly ran through the hallways to their classrooms. I scooped my oldest up first; as I did, I said “guess what?” His brown eyes widened, “you’re holding me!” Although their friends at school probably thought I’d lost my mind as I cried and held each of them, it was one of those moments I will never forget… and never take for granted again.

The most important thing I ask myself when I make medical decisions is “will this allow me to continue to put my arms around the people I love, and tell them that I love them?” When the answer is yes, I consider it a viable option. That was exactly why I had decided to have the surgery to begin with; it was the only thing that allowed me to continue making memories with my family.

For that same reason, we had decided to move forward with genetic testing for myself and our boys. If they did share my diagnosis, we needed to be proactive in their care.

Six weeks after surgery, our geneticist confirmed my gene mutation as spontaneous. She said only 7% of my cells were affected. Seven percent. Isn’t it amazing how much damage a mere seven percent can do!?

She had described my condition as “unlikely,” “like getting hit by lightening.” She said “no one knows why this happens,” and “it can happen to anyone.” She also confirmed that each of our children had a 50% chance of having NF2 too. If they inherited it from me, it would mean that 100% of their cells would be affected; their condition would be worse than mine.

Every single night since being diagnosed, I had prayed over each of our boys as they slept. As we learned more about the monstrosities of NF2, I became more fearful and prayed harder and harder.

“Please, God, don’t let my children have to endure these hardships. They’re just babies. I want nothing more than to protect them. All I’ve ever wanted is to take the sick away from them. I would gladly have a thousand surgeries and tumors if it means they don’t have to have one. Let me do this for them. Let it just be me. Show us your love. Show us your mercy. Show us your miracles; they deserve it.”

Finally, ten weeks after surgery, my cell phone finally rang with the news we had anxiously been waiting so long for. Our geneticist blurted out, “they both tested negative for NF2!!”

Relief flooded every cell of my body, and started pouring out of my eyes. I was so emotional that I couldn’t drive, and had to pull over.

The first thing I did was call my husband, Josh. Whenever I call during the middle of the day, he answers the phone with “Hey babe, are you okay?” I knew he would hear my tears, so I quickly shouted “they don’t have it! They don’t have NF2!!” I must have said it ten times before he understood me. I could hear the news sink in over the phone, and he began to tear up and smile as well.

Finally, we had some uplifting news to share with our support system! I happily began calling everyone we knew. Each time I said “they don’t have it,” I was filled with more hope.

HOPE

It was a huge turning point for me; my whole perspective had shifted. Right in the middle of hardship, we had been given 2 perfect little miracles. It filled me with the courage I needed to continue fighting my battles.

There were more tough days ahead, but now I had all the fuel I needed to overcome.

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