The Aftermath

We were told that we would receive the pathology for the tumor within 7-10 days of my surgery. But it took a lot longer than that. At my post-op appointment with one of Reichman's PA's at the end of September, he told us what they had found out so far.

My tumor is a Neurocytoma, which occupies about 1% of all brain tumors. Within Neurocytomas, there are two categories: A-Typical and Benign. Mine happens to be an A-Typical tumor, which is about 25% of that 1%. Because my tumor is so rare, it was sent before a tumor board, made up of oncologists, pathologists, etc., across the country. After a few more weeks of anxiously waiting, we were told that as of now, I don't have to see an oncologist, which is a huge relief. They have decided to watch it extremely close, with MRI's every 3 months until September of 2014, then every 6 months for a few years after that, then once a year for the next several years. We haven't been told if it's cancerous or not. But all of these things are really good signs and we are very hopeful that it isn't, and that it won't come back.

It has been quite the experience going through what I have.  But I know I am coming out of it better, stronger, and closer to my Savior, Jesus Christ, than I ever was before. 

As I was going through this experience, I would have these moments of waves of depression. It was so upsetting to me that my life had completely changed, and right when things were going great and life was getting exciting. There were so many things I was looking forward to doing, especially starting my senior year. I was trying so desperately not to be mad at my Father in Heaven, which was so difficult at times. I couldn't help but have questions like these running through my mind: "Why me?", and "Why right now?". Or, "What's going to happen?" "How will I cover up the fact that I am missing a great amount of my hair?" "What are people going to think?" "How long will it take before life returns to being somewhat normal?" "Out of all of the senior girls at American Fork High School this year, why am I the one who has to go through this?" I would just sit and cry as I felt completely alone and terribly afraid.

As I would wash my hands in our hospital room, and look in the mirror, I would cringe at the sight of my reflection. I asked my Dad to cover up the mirror with a blanket so I didn't have to face the ugly, bloody, stapled together, and mostly bald head of mine.

Over the course of the few days I was there, it got a little easier. I didn't mind seeing myself in the mirror as much, and I became more adjusted seeing myself in the condition I was. My mom sat on my hospital bed and braided the hair I had left each and every day. It felt good to have that small part of my old self with me still. I was amazed at how many nurses told me that I should just shave it all off. To start over, to start fresh. But I didn't listen to them. I couldn't imagine choosing to lose ALL of my hair, when I had the choice of keeping some of it. Looking back, I am so glad I kept what I did. And now I have quite the collection of hats -- 22 to be exact! :) Not to mention a pixie cut that's on its way! :D

Even though this trial has been anything but easy, I have taken great comfort in knowing of all the prayers sent up to heaven in my behalf by so many people. I know so many people have fasted for me too. I have felt of the power that came from both of those things and I have felt carried through this trial. It isn't over yet, but I know all of those prayers have been a huge part of why my recovery has been nothing short of miraculous.

Miracles. Believe in them. :)

I have also been blessed with some of the most incredible friends anyone could ever ask for. Along with my family, they have been a huge support and have been there with me the entire way.

 

A very close family friend gave me a card with this beautiful painting on it. 

It is titled, "Chief of the Medical Staff", by Nathan Greene.

In the card it says:

 

My Prayer for you

May you feel His presence and divine protection, keeping you free from harm.

May you sense Him guiding your healer's hands as He holds you safe in His arms.

"...for I am the Lord, who heals you." (Exodus 15:26) 

This painting touched me more than words can say. It means so much to me and I truly know the hands of my Savior were guiding the hands of my neurosurgeon as he performed my surgery.

"Gentle Healer" by Greg Olsen

I know that God lives. I know I have a Savior who lives and who suffered and died for me. He has felt every single emotion, and pain that I have experienced and He is the ONLY One who understands what I have felt. He is also the only One who knows exactly how to comfort me, lift me up, and bring peace to my soul. He is the Great Healer and through Him and His infinite Atonement, I can and will be completely healed physically, emotionally, and spiritually. I know Heavenly Father hears and answers prayers. I know this gospel is the only true gospel on the face of this earth and I consider it one of life's greatest joys and blessings to be a part of it.

With Love, Brianna

Oh, how life has changed...

Where it all started...

Let us start at the beginning.  Back in July at girls camp, I made the decision to ride on a zip line.  This was not your typical zip line, however.  This one was over a lake, and it was one you rode on and jumped out of into the water. 

July 16, 2013...

The butterflies in my stomach were going crazy.  "Okay Brianna, you got this.  It's not that high.  You've watched other girls do it, and they landed just fine."  These were my thoughts as I climbed the ladder that led to the platform with the zip line.  The man at the top held the swing-like seat as I sat myself down.
      He asked me, "Have you jumped out of a swing before?"
      I nodded.
      "Great. Just jump out of this as you would a swing."
      "Easy enough," I thought.
      "Are you ready?"
      "Yeah."  I could barely get the word out as the height of the zip line loomed beneath me and took my breath away.  He pushed the swing off the platform and I was off.  I got to a certain point and I heard him yell behind me, "Jump!"
        So I did.  As I fell the 20 feet and hit the water, I instantly gasped for air.  For one, the water was really cold, but for another, I knew I had landed wrong.  Instead of gliding smoothly into the water feet first, I lost my balance and landed somewhat on my stomach.  I was immediately in pain, although not horrible, I knew instantly I never wanted to do that again.  So, I didn't for the rest of the time we were there for camp.

The week after girls' camp...

One day, I was sitting around, enjoying the summer, when I started to feel this stabbing pain in my head.  It was far from the feeling of a normal headache.  It was really strange and I had never felt anything like it.  I told my mom about it, and she said, "Well, maybe you need an adjustment after that belly flop. It just might fix things."

There was a chiropractor we decided to go to.  We walked in, filled out some paperwork, and the chiropractor told me to lay down on the adjustment table face down.  He adjusted me, cracked my back and neck, and I sat up. He said, "Yeah, her neck was way out.  I would come back in a few days and get another adjustment to make sure we fixed it for sure."  We went on a trip that weekend, and my stabbing pains went away...almost.  I thought they were gone, but sure enough, they came back.  The following Monday, we went in for another adjustment.  We went through the same process, but this time, after he adjusted me, I sat up, and my head went completely foggy.  I was straining to think clearly, but it seemed impossible.  I got up, and walked out with my mom, and began to tell her what I was feeling.  We walked back to the car and I got in the passenger seat.  As we drove home, my mom started nervously asking me these types of questions:
    "What day is it?"
     "When is your birthday?"
Luckily, I was able to answer correctly, but my mom was still extremely worried.  As I collapsed on her bed and slept for a few hours, she was making several phone calls to try and figure out what was going on.
She came to the conclusion that we needed to go see a regular doctor.  During that appointment, he told us, "Within our office, we also have a Neuro-Clinic, and I would really like to send you over to someone over there."  He set us up with a chiropractor specialized in Neurology.  We met with this neurologist, and after having me do a few tests, he said, "Oh yeah. These are tell-tell signs of a concussion.  And I have some simple, daily exercises for you to do for the next week, and you should be feeling a million times better just in time for school to start."

My mom thought it would be a good idea to cancel all that I had going on and take a trip out to my grandparents house that week, to take a break from everything.  I brought the exercises with me to do every day, but as I was doing them, things got dramatically worse.  One afternoon, as we were out there, I couldn't process what we had been doing.  It seemed as if my short-term memory was really foggy.  I also started seeing double.  I was getting worried, because the neurologist was so optimistic about me improving, and yet I was going completely in the opposite direction.

August 19, 2013...

After we got home, we went in for our follow-up appointment.  My mom and I saw the neurologist and explained how things had gotten worse.  I could tell by the look on his face that he was surprised that I was worse, not better.  As we sat there and talked through things, my mom told him, "I just really feel like she needs to have an MRI done, especially to make sure there isn't any bleeding going on."  He replied, and said, "I agree; that's a good idea.  Let's get one ordered for you."  He proceeded to fill out an order form he could give us.



First day of my senior year :)

August 22, 2013...

After a few days of fighting the insurance, we set up an MRI for the third day of my senior year of high school.  I went to school, and sat next to a really good friend of mine in first period.  She had had an MRI done on her foot a while ago, and I had a lot of questions for her.  After first period, I went to seminary, and told my teacher that I would be getting checked out for an MRI.  He happens to be my neighbor and said, "Things aren't getting better?"
      I replied, and told him, "No, and I'm even seeing double vision now."
I proceeded into the classroom and took my seat.  I tried desperately to focus on the lesson, but was uneasy the entire time.  My mom had said she would check me out towards the end of the period, and I waited anxiously until that moment arrived.

Before the period ended, my mom came, checked me out, and we went to the hospital for my MRI.  I was nervous.  I had never had one before, and I didn't know what to expect.  We checked in, and we (my mom, my grandma (whom we met there at the hospital), and I) sat down to wait.  One thing I was worried about was being claustrophobic, so they gave me a valium pill to help me relax.  A few minutes later, they took me back to the MRI room.  I laid on a table and rest my head in a little tray/head rest thing.  The nurse gave me ear plugs and put a thing over my head that went over my face.  He raised the table and slid the table partially into the big donut-shaped machine. He also said he would be talking to me periodically.  The machine started and was really loud.  There were several clicking noises along with other weird sounds.  I can't remember exactly how long I was in there, but he brought me out and told me that he needed to give me some "contrast" so they could see the picture better.  It was a shot-like thing he injected into my right arm.  Then he put me back into the machine for several minutes so they could do another scan.  It seemed like it took forever.  After it was done, I walked back to the waiting area where my mom and grandma were sitting.  As I sat down, they asked how it went and I said, "Oh! It was a piece of cake! I don't even know why I was worried."  I told my mom that they had to give me contrast.  A lady from the desk walked over and said to my mom, "You have a phone call."  I sat there with my grandma for a few minutes while my mom took the call.  Then she came to get us and we walked all the way out to the car and none of us said anything.  We got to the car and my mom told me to get in so I got in and sat in the seat behind the driver's seat (that's where the neurologist told me to sit when I'm in a car).  My mom talked to my grandma for a minute before my grandma waved and walked away.  My mom got into the driver's seat and we pulled out of the hospital parking lot.

The news...

She started talking.  She told me the phone call was Dr. J (the first doctor we had seen) who said he was with Dr. O (the neurologist).  To my mom over the phone, he said, "I just talked to the radiologist, and we have some not so good news. They found a tumor." I immediately broke down and began to cry.  I was in absolute shock, and suddenly completely terrified.  I had no idea what was going to happen.  My mom couldn't really comfort me right then, but she said, "I'm so sorry.  I called Dad right after I got off the phone with the doctor, so he is on his way home right now."  I continued to cry as we drove home.  We pulled into the garage, I got out, walked into the house, sat down, my mom sat down next to me, and we just cried.  All of the sudden, it hit me and I asked, "Will they have to shave my head?" My mom said, "I don't know."  I wasn't comforted at all by her answer and the fearful thought of that possibility wouldn't leave.  When my dad got home, he sat next to me and held me as we cried together.  I was scared out of my mind and could not believe this was happening. Nothing could have ever prepared me for news like this.  I asked my Dad if he would give me a priesthood blessing, and he said he would.  He went out in to our cul-de-sac, and two brethren were home that my dad could ask to help out with the blessing.  My dad explained what was happening and the news we had just received.  One of them gave the first part of the blessing with the consecrated oil, and my dad gave the last part.  Even though I still felt afraid, this was one of those moments where I was incredibly grateful for the priesthood and the access I have to it.

The hospital...

Soon after we had arrived home, my mom got a call that told us to go to the ER in the hospital immediately.  After I received the blessing, we all got in the car and drove to the hospital, parked, and walked into ER.  I was still in shock, but they put me and my parents into a room where I had my blood drawn, and my neurosurgeon's PA, Jamie came in to talk to us.  We looked at the MRI images and she showed us how my left ventricle was a lot bigger than it was supposed to be.  Then she sat down and started talking to me and my parents.  She talked through a little bit what would be going on the next several hours and in the morning.  Jamie then said, "Tomorrow morning, you are going to get a really sweet haircut."  I started crying yet again.  That fear had become a reality.  She said, "Most of the time, we tell people to shave it all off.  But that will be your decision, so you can think about it and let us know what you want to do."  Of course if I could have chosen, my choice would have been to keep all of my hair, but obviously that wasn't an option.  As she was talking to us, the neurosurgeon, Dr. Reichman, came in to speak with us.  When he found out it was my birthday the next day, he offered to wait one more day to perform the surgery.  But I consented to have it done on my birthday, and he admitted he wanted to get in there and get it out as soon as possible.  After they left, I changed into my hospital gown, and was wheeled to ICU where I would be spending the night and the next few days.  That evening, my bishop came to visit me as well as my grandparents.  I was going to have to fast all through the night in preparation for my surgery, so I could eat anything that night.  I chose to have my parents go and get me a delicious sandwich at Kneaders as well as a few desserts since I wouldn't be able to enjoy anything like that the next day.

I visited with my bishop, my grandparents, and I ate my dinner.  A little bit later, a nurse delivered a pile of letters, which she said was from "Momma Marianne and the lunch bunch".  That made me smile because I knew exactly who that was - one of my best friend's mother and several of my closest friends from school.  I was extremely blessed to receive and read those precious notes at that time written by the very best friends I could have ever asked for.

A letter from one friend really stuck out to me. Specifically a scripture he included within the letter:

"For can a woman forget her sucking child, that she should not have compassion on the son of her womb? Yea, they may forget, yet will I not forget thee, O house of Israel.

"Behold, I have graven thee upon the palms of my hands; thy walls are continually before me." (1 Nephi 21: 15-16)

This scripture brought me so much comfort at such a critical time, which I was so grateful for.

The surgery/my 17th birthday...

I had spent a few hours during the night alone in the hospital, the spinal fluid in my brain had begun to pool up, and I was at risk of having a massive seizure.  I was unaware of this at that time, which I am incredibly grateful for in hindsight.  The nurses watched me very closely all night long.  I was fine, I slept okay, and my parents got there about 6:00 am.  Around 6:30 a nurse came in to shave my head.  She asked me what I wanted to do and I told her to simply take what she absolutely had to.  I sat in my hospital bed and cried as she shaved most of my hair off.  At this heartbreaking moment, I felt as if I was losing a part of myself.  After she shaved a portion of my head smooth, she stuck these circular white things on my head that would serve as a GPS for the neurosurgeon.

 

After that, I had to go get another scan done before the surgery, which was scheduled to begin at 7:30 am.  But, for reasons unbeknownst to us, (possibly another surgery Dr. Reichman had to perform) it was pushed forward until 10:30.  About 10:00, I was wheeled into what they called "Pre-Op".  A bunch of people knew it was my birthday, so they had gotten me three balloons and attached them to the end of my bed.

Not long after my parents and I were there, the anesthesiologist came in and talked to us for a few minutes.  His voice was vey calm and subdued and he was very kind.  He gave me the drug that would knock me out and I started to get sleepy.  A lady in my ward was there, and she came in to Pre-Op, and I got to give her a hug.  Soon after, I don't have a memory of what happened.  I was knocked out and the next thing I knew, I was in "Recovery" with a very dry mouth and a terrible sore throat.  After spending a little bit of time in there, with a few nurses, I was wheeled back to ICU, where I got to see my parents.  While I was there, I had some awesome nurses that took great care of me.

The next day...

I decided to try and eat some food since I was getting hungry.  They gave me a menu and I ordered some cream of wheat.  I also asked for some Jell-O and Italian ice.  My dad gave me a few bites of those things, but I couldn't stomach it, and ended up throwing it up.  An awful part about all of this was that I would get so nauseous at times.  But, according to Dr. Reichman, any time he has to work in the ventricles, his patients are always nauseous.  So it was a pretty normal thing. But that didn't mean it was any fun at all.  On this same day I got up and walked for the first time since surgery! That was a great accomplishment.  Even though I didn't walk very far, it completely wore me out and I had to take a nap afterwards.  Dr. Reichman came to check on me every day in the ICU as well as the rest of my stay in the hospital.

 

The orange coloring is from the iodine they put on my head before surgery.

Moving to the 4th floor...

On Sunday, the second day after my surgery, I was moved out of ICU to the fourth floor.  I was told by the ICU nurses that that hardly ever happens unless you are doing really well, so that was a really great sign.  We were moved to a really nice room that was big, with a bathroom, shower, and a couch with a pull out bed.

Dr. Reichman came in to look at my bandage, and without much warning, he ripped it right off.





My Dad had gone home to spend the night with my brothers, but he came back later that morning...with his head shaved.

I was touched beyond words and both my mom and I began to cry. He told me, "I woke up, and looked in the mirror.  I couldn't bring myself to comb my hair, so I shaved it off."  He couldn't help but become emotional as he told me.

I switched through several nurses and techs throughout my stay at the hospital, but one of my favorites was probably an RN named Laura.  She was so sweet and just fun to be around. :)

Laura cleaning my head with a mix of water and hydrogen peroxide

While on the fourth floor, so many people sent in gifts or flowers.  It was amazing to feel the love from so many people.

 



Even my choir teacher sent in a balloon and teddy bear that was from the choir I am a part of. :)

Dr. Reichman strongly encouraged me to get up every few hours and walk around to prevent blood clots.  At first, I had to bring the IV stand with me (nicknamed Marshmallow) but once I wasn't hooked up to it anymore, I could walk around with my Dad by my side, holding on to him.

Finally, it was time for my stay at the hospital to end.  I was fortunate enough to go home the Tuesday after my surgery, August 27th.

When I got home, this is what my garage looked like--posters from all of my friends welcoming me home :)

My brothers made this poster for me which was SO sweet :)



It was so very sweet too, because our puppy, Zoey, could completely sense that something was different with me.  Instead of going crazy and being super hyper like she usually does, she acted very mellow and laid at my feet most of the time.

Being able to see my best friends after coming home was one of the best feelings ever. :)  The visits from members of the ward and friends meant so much to me, because I could feel of their love and concern.

The following Friday, August 30th, I went to Reichman's office to get the staples out.

Before:

During: 

 

After:

The recovery process was slow, but I eventually gained my strength back and my first partial day back at school was September 10th.  It was amazing to see those friends and start to feel somewhat normal again.

My friends have been so incredible through this experience.  I know it has been really difficult for all of us, but their support has been such a key element in my recovery.

There is a quote that has really been a great strength to me through this trial.  I was reminded of it in the hospital, and it says:

"You never know how strong you are until being strong is the only choice you have."

Thanks for reading my story! :)

With Love, Brianna