Tips From the Ependymoma Community for Children and Adults Starting Radiation Treatment

— Categories: Ependymoma Community Posted on October 21, 2022

We asked the ependymoma community to share useful tips for people starting radiation treatment and received good feedback from survivors, parents, and care partners.

Radiation treatment can be recommended for patients with ependymoma, but it can be scary and present challenges and concerns that are important to discuss with your medical team. Read through these creative ideas and words of encouragement for inspiration.

Motivational

You've got this!
It is hard, but you will get through it.
Give yourself grace!
Rely on your support system.

“I remember being soooo tired. Lost my hair in the spot they were treating. Felt generally crappy during treatment. Get lots of rest, hydrate, and get someone to drive you to treatment. You can do this!” — Christie

Clinical

Ask your doctor about medications for anti-nausea. Don’t try to tough it out.
Stay hydrated and eat what tastes good. Get rest.
Ask for your doctor’s opinion on medication that could help with possible memory loss during radiation.
Pay attention to the initial appointment when you meet the people who actually give you treatment. As great as your doctors are, the techs treating you are important too.
Getting used to the mask is hard. We all did it. You can, too!
Radiation and everything that goes with it is exhausting. Sleep when you need to, stay hydrated, and eat food that is healthy and you like. I relied on popsicles, cereal, mac and cheese, & PB&J — preschool food. Stay strong. You can do this!

"I lost my hair, and I experienced a great deal of fatigue,nausea, and skin dryness on treated areas. When these changes happen, acknowledge your side effects and react. No one expects you to go through treatment and act like it doesn’t affect you." — Nick from the NCI-CONNECT blog post What To Expect During and After Radiation Treatments

Practical

Every day, we did a count up from 1 to 33 with our fingers and added people to it with their fingers until we had 33 pictures of our count to the end of treatment.
We took photos at the same spot before and after…33 days. It was a good way to track how far she came and remind her what a badass looks like.
Get a good lotion. We used Pure Vitamin E which helped with scarring, but it also helped with peeling and itching.
Get a good hat like a ‘Love Your Melon’ hat. The soft and perfect thickness of the hat is made for this. Stubble hair did not stick or pull in this hat, and it protected my daughter during radiation.
Get a favorite blanket because the radiation room can be cold.
Use aromatherapy stickers. Put one on the outside of the mask or shirt to help stay calm during radiation. Lavender was my child’s favorite.
Create a fun playlist that can take you to your happy place.

“As a caregiver, be prepared for your loved one to experience fatigue and potential hair loss. Encourage all involved to listen to their bodies and rest when needed.” — Mason