Ependymoma Community Gets Involved

Travis Vs. Ependymoma

In September 2013, Travis was diagnosed with an anaplastic ependymoma. Travis’ tumor is near the brain stem, which causes difficulty because it controls everything like breathing, walking, seeing and more. Travis has had six brain surgeries, four rounds of chemotherapy, five rounds of radiation and one round of immunotherapy. He just completed daily hour-long whole brain radiation and is halfway through seven stereotactic radiation sessions. His tumor and treatments have caused him to lose his left field of vision, which can cause balance issues. He has been through a lot but he’s thankful for his friends and family that have helped him get through it. Travis shares some encouraging words to those who are reading this: “You are not alone. There have been many times I really needed to hear this. So here I am, saying it to you.”

Travis works at American Family Insurance in Madison, Wisconsin as a developer. In the month of May for Brain Tumor Awareness Month, his co-workers dedicated their monthly newsletter to Travis and shared information about ependymoma. Included in the newsletter was a link to his online fundraising page where they were able to support their friend in the fight against brain cancer.

Ependymoma Awareness Day Outreach

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 8, 2017, as Ependymoma Awareness Day.

Collectively, these events helped to create a greater understanding of ependymoma. Here are a few of the Ependymoma Awareness Day activities that were held around the world this year!

Along for the Ride

By Hilary

CERN Inspiration Story

Looking back now, it’s hard to believe I didn’t notice any of my symptoms until they became too severe to ignore. I think that’s the difficulty with tumours. They grow slowly so the onset of symptoms is so gradual that it’s difficult to know that something is very wrong. I was tired, lethargic and sometimes sleeping 14+ hours a day.

Last year, when I was 27, after working full-time for some years as a graphic designer, I decided to go on a big adventure travelling around Northeast Asia and spending my hard earned dollars on experiences. I was travelling solo for nine months and most of the trip was by bicycle, so that’s a fairly good reason to feel tired?!

My Tumour Made Its Presence Known

It was when I was in Mongolia that I really started to feel unwell. Drinking lots of cups of coffee wasn’t helping my exhaustion anymore. And once the unrelenting vomiting began, I simply thought I did not boil the tap water properly (since Mongolia is an underdeveloped country). Curiously, there were no headaches, however during this time I sent a strange message to a friend, “Hey, do you know what it means when your head throbs in your ears and around your eyes? Like a whooshing sound - the same rhythm of your pulse?” It’s quite disturbing to read that now knowing it was a tumour causing that sensation. As a healthy 27-year-old, I would have never guessed in a thousand years that I had a tumour.

One night in Ulaanbaatar (the capital of Mongolia), after days of vomiting and unable to keep food and liquid down, I started to feel very worried. I knew I was dehydrated and my level of exhaustion was like nothing I’d ever experienced. But I felt sure it was a stomach bug from the drinking water. I went to a hospital in Ulaanbaatar and was put on a drip (IV fluids) for a couple of hours before stepping outside again in the freezing snow.

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