CERN Ependymoma Outcomes Results Published

Support our Awareness Campaign

With your support, we were able to raise almost $17,000 with our Ependymoma Awareness Day campaign! Help us reach our goal of $20,000 by donating by June 2. With your help, we will continue to expand our efforts to improve the care and outcome of people with ependymoma. Your involvement is critical to our success. Thank you again for your help.

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Burke Speaks at Ependymoma Awareness Day

Most of you don’t know me - I’m Burke Tinsley. About 5 years ago, I was just a normal 13-year-old kid. I ran cross country, was a straight-A student, and had a B in Greek. That really bothered me. That was my biggest problem.

I started getting headaches, but that wasn’t a big a deal. I went to the doctor a few times, but they thought it was just vertigo, acid reflux or pediatric migraines. They couldn’t figure it out. Finally, after about a year, they scanned my head. Brain tumor. Ependymoma. Wow. It felt like the end of the world. I named my tumor Frank.

After multiple surgeries and radiation, I couldn’t walk, talk, or eat. I couldn’t do anything. I felt like it was the end of the world. Some doctors thought I should be moved into a nursing home, but Drs. Hummel and Pruitt at Cincinnati Children’s Hospital thought I could get better. After 10 and a half months in the hospital, I could walk a little. I moved from a wheelchair, to a walker, to a cane, to now nothing.

Outcomes Projects Featured in IBTA Magazine

The CERN Foundation was honored to be featured in the current issue of Brain Tumor, the official publication of the International Brain Tumour Alliance. The article included a report on CERN’s Outcomes Project and the impact of ependymoma in adults and children. The Outcomes Project, now in its fourth year, has had 280 adults and 79 kids and their parents participate.

What we have learned about adult patients

An ependymoma can occur anywhere in the brain or spine and can impact patients both physically and emotionally. Surprisingly, 33% percent of patients were unsure of the grade of their tumor, highlighting the potential lack of education related to the disease and implications for follow-up. Interestingly enough, 17% of patients reported seeing a family physician in follow-up for their ependymoma, and not a neuro-oncologist or cancer specialist, making the need to improve our knowledge and understanding of this disease a focal point for future work.

Depending on the tumor location, there was a big difference in the time patients reported symptoms prior to being diagnosed. We found that nearly 60% of spine tumor patients versus less than 30% of brain patients were symptomatic for more than a year before diagnosis. This delay in the time to diagnosis for those with spine tumors is concerning. It is not clear from the study if patients delayed in seeking care or if there was a delay in the health care team ordering imaging studies based on the type of symptoms that patients had. Having a clear understanding on the differences between locations can prove to be a resource for healthcare teams treating adult ependymoma patients. With help from medical providers, patients can detect symptoms faster, leading to an earlier diagnosis.

A Unique Bond Between a Father and Daughter

By Allie

CERN Inspiration Story

I am the proud daughter of a brain cancer survivor. When I was two-years-old, and my father was thirty-one, he was admitted to the hospital after having a seizure. A few days later, he had surgery to remove the tumor and has been well and cancer-free since that day. My dad’s miraculous story is something I’ve had the pleasure of telling for over two decades. I’ve always admired his strength, but also recently experienced the reality of facing something so terrifying. It wasn’t until I was twenty-four and staring at my own scary MRI that I truly appreciated how blessed we were as a family to live so “normally.”

Debilitating Symptoms Begin

The beginning of 2016 brought a week-long bout of terrible nausea, which I assumed to be a stomach virus. But a few weeks later I started experiencing nausea on a more regular basis. I struggled to narrow down what was initiating it at first. As summer approached, I started noticing that the nausea would peak before an event with an unknown or stressful element. It was a form of social anxiety. These symptoms were their worst during a work trip to San Diego. One night we went out for dinner at a restaurant with a live band and dance floor on the patio. Typically, this is a setting I would enjoy, but this night I hurried back to the hotel with debilitating nausea after eating. I was overwhelmed by the number of people and the unpredictability of a crowd that size. I sought counseling for anxiety which helped some, but the problem was never fully resolved. My doctors and I tried switching some of my medications around with no positive changes.

On July 4, I had my first migraine. These headaches were mild, short, and occurred every two or three weeks. I had a visual aura before each headache which indicated it was a migraine. There was a small blind spot to the left of my vision that would begin to flash and grow larger. As it grew my left peripheral vision was greatly impaired. The aura would last about fifteen minutes before the headache would set in. This was a change I thought I would and could live with.

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