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Brain Tumor Awareness Week: Emily's Story

Blog post written by: Emily Leaver

2019 was supposed to be the best year of my life. And in many ways, it was. In April, I married my best friend and we were going to start trying for a family. Then our lives were turned upside down.

For several years leading up to 2019, I had been experiencing symptoms of a pinched nerve in my left shoulder / arm. What started as minimal numbness then escalated down my arm. I started to experience headaches, but brushed it off as a career change and being in front of a computer full time. I’ll never forget telling my then fiancé that I felt something was in my head, I just didn’t “feel right”. Being only 25 at the time, I certainly would have never expected it to be anything serious. On July 23 2019, while driving on the interstate, my left arm locked and I lost my ability to speak. I brushed it off as it lasted only a second or two. The following day, this episode happened again while at work. Several of my co workers told me I should go to the ER and get checked out which I thought was a little extreme. I remember calling family members looking for someone to assure me I was okay, but I was met with the same answer — I needed to get it checked out.

On July 24, 2019 I drove myself to the emergency room and met my husband. As I walked in, I told the front desk that I thought I had a stroke because my symptoms did align with stroke like side effects. I could tell the nurse definitely was unsure of the validity of what I was saying as a 26 year old who appeared to be healthy and had just drove herself there. I went into triage where the doctor said he believed I was okay but was going to scan me just to be sure.

As I rolled out of the CT machine, I knew something was wrong. I could see the doctor on the other side of the glass scrambling on his phone. His wide eyes looked at me with fear. As we rolled past elderly patients in hallway beds and were told we were getting a room, I looked at my husband and said, "something isn’t right". Within five minutes, a doctor came into my room and said, “this is an oh shit moment, this isn’t a death sentence but a life style change. You have a mass on your brain. Do you want to see it?” A lot of what came after is a blur. He rolled the monitor in and showed me, Peter (yes I named my tumor). Peter was 5x4x5cm.

I met with a surgeon the following week and learned I would be undergoing an awake craniotomy due to the placement of the tumor. On August 6th I underwent surgery to remove Peter. My surgeon was able to remove 75% of the tumor. The surgery was life changing. It was straight out of an episode of Greys Anatomy. While probing my tumor, at one point I lost ability to speak, and also had full left side paralysis.

Two weeks later I turned 27. The next few weeks were followed up with multiple doctor appointments and ultimately learning Peter was cancerous, diagnosed as Grade 3 astrocytoma. Upon meeting with my oncologist I learned the effects chemotherapy would have on my ability to bear a child in the future. Before starting treatment I met with a fertility specialist and I underwent egg retrieval and had embryos made for my husband and I. I completed six and a half weeks of radiation and chemotherapy, followed by six months of chemotherapy maintenance which was completed in June 2020.

In September 2020, I underwent fertility to have my first IVF cycle. This cycle failed but we immediately tried again. In December I learned I was pregnant, but I wasn’t progressing as I should have been. I ultimately lost that embryo and told my husband we were taking a back seat on fertility. I was told I was pre menopausal, my egg supply was depleted and my ovaries looked “funky”. The next month I was pregnant — naturally. As I sit here writing this with my five week old son, Oliver, I find myself completely in awe.

So I’m sure at this point you’re wondering what was the good parts of 2019? Marrying my husband was the highlight, but finding an inner strength in myself is a close second. Now let me make one thing clear, things have not always been sunshine and roses. I have struggled with a lot of, "why is this happening to me" and depression. I spent over a year in therapy, and have cried enough tears to fill the ocean.

However, I’m still here...For now at least. It’s not beyond me that my journey will take another turn at some point, but for now, for today...I am here. I’m stable. I have scans every 3 months and take each day as a blessing. I allow myself to have my moments where I feel every emotion, but always start each day and finish each day with a thankful heart that I’m still here. If I had to share any advice to a newly diagnosed patient or someone fighting, it would be to allow yourself to feel every emotion, find a support team, whether it be family or strangers, and to never give up. As corny as it sounds, it’s insane how much your mentally can shift your journey. When the world says you can’t, God says you can.

You can follow along with Emily's journey on Instagram @whemzily!

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