Hi, my name is Emily, or you can call me Emmie. I was diagnosed with a grade 2 ependymoma on June 21, 2023.
Prior to my diagnosis, I was experiencing a multitude of symptoms. I was 18 when things started happening. The first thing we really noticed was by walking, I was severely uncoordinated, and I had fallen three times in one day, which I had played off as being clumsy. Now that was the first week of June, I would say the day before I went to the ER, I was at the beach with my mom, and I could not make it to the car. I had fallen off the dune, and then I went to bed and I also fell, and then my left leg would not stop shaking and bouncing.
I did not want to go to the ER that night. I was convinced that it was nothing, but my mom was very adamant, so we went to the ER the next morning, specifically for my leg, and pleaded for bloodwork and an MRI, which was scheduled for only one thing, but we ended up doing full body, that’s when they found the tumor.
The tumor started in my brain stem and went all the way down my spine. The biggest one they had ever seen at the hospital there, and I was transferred to Northwestern in Chicago, where I stayed for three nights. I did so much blood work and more MRIs, and I was started on steroids after I had left for the three days I would be going back the July 8, which was when I met with my brain surgeon to schedule surgery date because I had already met with my spinal surgeon that I was there for the three days.
We scheduled surgery for July 11, and everything went great. Surgery was 16 hours long. I was intubated for a full day, and I was in the ICU for three days or four days I can’t really remember. I was then transferred to my own room, where I stayed for about a week and a half to two weeks.
I could not walk after surgery. I could barely move my arm, and I had no feeling in both of my arms and hands. I am now two months post-op, and I’m walking without a walker. I can brush my hair. I can get dressed. I’m exceeding a lot of everyone’s expectations because of how quickly I’m recovering.
My tumor was the biggest one they had ever seen, and the outcome of surgery was estimated to be a lot worse than it was. I still have no feeling in my hands or my arms, but my strength is getting a lot better. I’m still doing outpatient therapy and occupational therapy which has helped me tremendously. I don’t think I would be anywhere near where I am now if not for inpatient and outpatient treatment.
This is just a little glimpse of how my story goes. It’s obviously ongoing. I am 19 now. My birthday was on Sept. 4, so I got to celebrate that in the midst of everything. I’ve been able to keep a very good attitude about this drastic change in my life, and I wouldn’t have been able to do that without the support of my friends, my family, and my neighborhood doctors and nurses who helped me. I still have many doctor’s appointments scheduled. I’m getting an MRI done to check if there is any residual tumor and to see what my treatment plan is for the future. For now, my story is ongoing, and there’s not an ending yet.
