Learning to Live Everyday Like It Is Our Last
Name: Eileen R.
Type of Cancer: Grade II Intramedullary Ependymoma, C1-C2
Diagnosed: Age 30, 2014
By: Eileen
— Categories:
Adult
Spine
In November of 2013, I was at home with my two-year-old daughter and my eighteen-month-old son. It was a cold morning so the three of us decided to cuddle on the couch and watch some TV. Mr. Monkey (a.k.a. – my youngest son) was climbing behind me on the couch being quite the little daredevil. As he was climbing, he lost his balance and grabbed my hair to brace his fall, which in turn, jolted my neck to the side and caused a HUGE shock up my spine and into my head. This caused a warm sensation and pins and needles rush to my face. I was in so much pain that I began to cry.
I rested on the couch, forcing myself to calm down. After some deep breaths, the pain slowly began to subside, but I felt a weird sensation on my scalp – like someone was plucking out individual hairs on my head. I called my husband and told him what happened and that he needed to come home to take me to the ER.
At the hospital, I explained my experience. You have to admit it does sounds kind of ridiculous when a mother comes into the ER complaining of neck pain because her toddler pulled her hair. The doctor was very concerned especially after hearing that I felt tingling in my face. He ordered a CT scan thinking that perhaps I had a ruptured blood vessel and gave me an IV with fluids and pain medication. The CT scan came back clear (often spinal tumors are unseen in a CT scan).
A week later, I went to a neurologist. Any major pain that I had from the initial injury was pretty much gone. He performed an EMG test on me to see if I had a herniated disc or pinched nerves. My EMG test was normal, but I still felt like something just wasn’t right.
Results From My MRI
After reading over my case, the neurologist decided that he wanted to send me for some MRI’s just to be safe. He reassured me, “I am sure everything will come back clear and you will be perfectly fine”. My MRI was booked for February 2014. So for the next three months I went on living my life as I normally did, with any pain from the incident completely gone.
Fast forward to Feb. 18, 2014 – the day of my MRI. I get placed into this giant tube that is extremely loud. I was a little nervous, but the whole MRI experience wasn’t all that bad.
Two days later, I got a call from the doctor stating that I needed to come in as soon as possible to discuss your MRI results. That is all he was allowed to say over the phone. Tears streamed down my face. A dozen worst-case scenarios played in my head and my life was flashing before my eyes. I asked myself “am I going to die?” I called my husband at work sobbing and trying my hardest to repeat to him what the doctor had just told me. My mom, husband and I headed over to the hospital. We waited for what felt like forever, but I think it was only about ten minutes before I was called in.
The doctor came into the office. He reassured me that my son did not cause any damage to my neck. “If anything, the accident was a blessing in disguise” he said. He told me they discovered a mass inside my spinal cord. He set up an appointment for me to go see a neurosurgeon the very next day. Everything that happened when my son pulled my hair made a little bit more sense, whatever this mass was in my spinal cord must have caused a bad reaction from the neck jolt, compressing my nerves and causing pain.
The very next day, my husband and I went to see the neurosurgeon. The neurosurgeon performed a few tests on me and asked if I had any other symptoms, which I didn’t other than the minor pain in my left shoulder blade. As we were sitting down, he pulled up an image of what a normal brain and spinal cord are supposed to look like and then he pulled up my scans. And there it was… I wouldn’t allow myself to show expression on my face, other than my eyes widening a bit, but shear panic radiated through my body. I thought to myself, this is not good.
The doctor thought the tumor could be either an astrocytoma or an ependymoma. He was amazed that I had very little symptoms considering how much space it was taking up in my spinal cord. As he pointed out the tumor, he kept on saying “you are a serious case” and that this has probably been in my spinal cord very slowly growing for years. He specialized in spinal cord surgeries related to sports injuries, so he referred us to one of the top neurosurgeons in Toronto.
When we met with the surgeon, he went straight to the hardcore facts. He explained what the tumor was, where it was located (C1-C2), the functions in that area, and the procedure. I was hoping he would say we could ‘wait and watch’ the tumor, but he didn’t, he told me my tumor would need to be surgically removed. If I left the tumor alone, it would grow in the spinal cord and there would be a 99% chance that I would eventually become paralyzed. He briefly went over all of the risks that come with the surgery. One of the risks was that I would be completely paralyzed from the neck down and be dependent on a ventilator. He quickly covered what to expect once the surgery was over and following weeks. He also said that the tumors were very slow growing.
My surgery was scheduled for July 28th 2014. It was probably the scariest day of my life. The morning of my surgery, I said goodbye to my children, not knowing what I would be like the next time that they saw me. Once I was at the hospital, tears trickled down my face once I was rolled away from my husband into the operating room. The last thing I remember thinking about before I was put under was my four beautiful children and how much I loved them. My surgery lasted just over six hours.
My Road to Recovery
I remember waking up to my surgical team standing around my bed waiting to see if I could move my legs and wiggle my toes. I am happy to say that I could! The day after surgery, I was up and walking unassisted. Even though there were just a few challenges I faced in the hospital, I blew the medical team away with my outcome. I spent four days in the hospital and then five weeks recovering at my parents’ house with my four children coming to visit me daily. I am happy to say that I am now three months post-op and am only left with a bit of numbness in my left leg and foot, some tingling in my left big toe and a little bit of stiffness in my left shoulder. I continue to go to physical therapy once and massage therapy and am seeing huge improvements because of it.
I am back to doing my everyday household chores and chasing after my four children, though I still need a nap some days in the afternoon. I am hitting milestones everyday and am looking forward to start running again very soon – something that I used to love to do before my surgery.
I am so incredibly grateful for my husband’s love and strength through this hard time. For my friends and family who supported me, prayed for me, and encouraged me through my journey. I could not have gone through this journey without my mother and my mother-in-law who have been so incredibly helpful with the day to day task that need to get done when caring for four young children. My heart swoons for my youngest son, Desmond, if that “blessing in disguise” did not happen that day on the couch, who knows when we would have found the tumor and perhaps by then it could have been too late. I am so grateful that I came across the CERN Foundation website, which gave me some great insight on what to expect when you endure an ependymoma.
I was touched by so many amazing stories that I wanted to share my own in hopes to inspire someone who happens to find themself in the same situation. Last, but most definitely not least, I am extremely thankful for my neurosurgeon, who indelibly saved my life! If there is one thing that I can take away from this experience is that life is a precious gift and that we really do need to live everyday as if it is our last.