Neuro-oncologist and Ependymoma Survivor Shares Her Story

— Categories: Press Release     Posted on May 29, 2019

Dr. Zsila Sadighi shared her experiences as an ependymoma survivor who later became a pediatric neuro-oncologist at the 2019 Ependymoma Awareness Day butterfly release during the National Brain Tumor Society’s Head to the Hill event.

Participants gathered to raise awareness of ependymoma at the 2019 Ependymoma Awareness Day butterfly release.

This has been an emotional day. How many of you were at the Race for Hope survivor’s walk today? If you were a part of the survivors’ stroll, then you experienced the same emotions I did - tears rolling down my face, thankful for the people who are alive and thankful for those who are standing in for those we have lost. We are all here, because we have been through this journey together. I may be a pediatric neuro-oncologist, but know that I have something in common with you. I was in your shoes. I had a brain tumor myself - an ependymoma.

My journey starts with always wanting to be a doctor, even as early as kindergarten. When the kindergarten teacher asked my mom to help me answer - what am I going to be, I said, ”a doctor!” I never had a plan B. I did not know what kind yet and that is what is interesting about this story.

As a junior in high school, I had been ignoring symptoms for over a year. I had the worst headaches of my life. I did not know what a normal headache was back then. I also ignored symptoms of losing my vision temporarily and feeling like I was going to collapse. Finally, one day, a symptom definitely caught my attention -one side of my body temporarily went paralyzed. That is when I went to the hospital, despite my own will. The emergency room physician said, “You have a migraine. The good news is we will give you pain medicine and you get to go home.  We are sorry, though, due to hospital policy we have to get a CT scan.” That CT scan changed my life. It came back revealing a massive brain tumor. It was two-thirds the size of a coke can, over 40% of one hemisphere of my brain, going from the back of my head all the way to the front. Here I am, this teenager who is involved in every activity possible, making good grades, so thankful to my mom who raised me, just trying to do good and serve others on this journey to becoming a physician one day. I had already bridged wanting to serve others in my local community as well as abroad and thought, “I can do medicine where I serve others and see the ministry in it.”

All of a sudden, here was overwhelming news that my life might change. My neurosurgeon said, “We have less than 48 hours to get the tumor out.” Behind the scenes, he said, “I am not sure she is going to make it. You need to say everything you want to her, because she may not live through the surgery.” He told me, “I am going to do the best I can to get you through the surgery, but you need to know you are going to wake up very different. You will most likely be paralyzed on one side of your body.”

I was visibly shaking as I clutched my sheets. Many of you know this moment when you and your loved one were shaking at the overwhelming news. I clung to my faith. I somehow knew that my time was not over, but I knew I was forever going to be changed. I did not know when I woke up from surgery that I would be a future neuro-oncologist, yet I was already doing a neurological exam like when your neurologist has you move your fingers back and forth. My neurosurgeon said he noticed as soon as I was waking up I was doing that to see if I could move everything. I am so thankful that I was able to ask my neurosurgeon, “Can I finish high school, can I go to college, can I go to medical school, can I still live my dream?” I then asked my mom, and she said, “This is the sign. You will now understand the patient’s perspective. Go for it.” My neurosurgeon confirmed, “Follow your dreams.” Therefore, I pursued the path.  After my craniotomy, I did not have radiation or chemotherapy, but I was anxious with every scan to see if I needed further treatment. There was a high chance that I would need radiation, but luckily the scans remained virtually the same. I can relate to each of you when I say that every scan is the most humbling time of our lives.

I feel so fortunate to have finished high school on time, graduated from college, and completed medical school.  While in medical school, a neurologist asked me what type of physician I was going to be and I knew it would involve the brain. He immediately said, “You are supposed to be a pediatric neuro-oncologist and we are going to build a program for you.” I had not even had one day in the field, worked with patients, or been in a rotation, but I had lived it, and I was so thankful. This involved a lengthy residency in pediatrics and pediatric neurology followed by a fellowship in neuro-oncology at MD Anderson Cancer Center, where Dr. Mark Gilbert trained me in my adult neuro-oncology portion, who happened to have started the CERN Foundation as the lead founding doctor. This has been such a full circle. I had no idea this would happen in my life. As I reflect on my life, becoming a pediatric neuro-oncologist has fulfilled a dream for me to pay the gift of life forward every day and be of service to others.

Today is Ependymoma Awareness Day as we gather here for the butterfly release. Every single one of us has a different symbol of what a butterfly means to us. We have already heard about the undeniable hope and renewal. To me, it also means that they fly, defy gravity, and have been through transformation. Every single one of us, whether we are the person with a brain tumor, a survivor, a loved one supporting the person with a brain tumor, or the healthcare worker who is fighting for brain tumor survivorship, are all like butterflies. We have been given supernatural wings to defy the gravity of the situation and we are soaring, even when we feel at times like we are lying face down in the mud going through this and do not see a light at the end of the tunnel. We have somehow already gone through that transformation and we are flying through and been given supernatural strength to fight on.

As we stand here in Washington, D.C., you are going to Capitol Hill tomorrow to meet with leaders of our nation. It is such an honor that we can try to impart to them that we want a cure for rare disease; we want a cure for brain tumors. We are going to fly and unite. Butterflies are inspirational. You see them, they fly around, and you almost want to follow them. My prayer while meeting with members of Congress to raise awareness and research for brain tumors is that others will want to join in. They will see you like a butterfly and be inspired to catch a movement and continue advancing.

I recently joined the faculty at MD Anderson Cancer Center after serving more than six years at St. Jude Children’s Research Hospital.  Both are CERN sites. In closing, I would like to share with you a quote that struck a chord with me, which was once famously made by the founder of St. Jude, Danny Thomas. He said, “All of us are born for a reason, but all of us don’t understand why. Success in life has nothing to do with what you gain in life or accomplish for yourself. It’s what you do for others.” I believe that each and every one of us, whether we are caregivers, survivors, lobbyists, or healthcare providers, are standing in for those we have lost. We are fighting to help everyone live so they can have their purpose. We are helping fulfill their purpose for them. Let us stand together and know that is success.

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