What advice do you have for ependymoma parents?
We asked our community to share their advice for other ependymoma parents. Read their advice.
Find Support
Don't be afraid to ask for help. Utilize the resources available to you - support groups, a CaringBridge site to relay accurate information quickly to loved ones, offers from friends or family for meals or help with other children, meals, household, etc. People who care about you aren't going to know what to do or say, but if they offer to help, let them - it will be good for all of you.
Seek Out Knowledge
Research your hospitals and doctors and choose wisely, but never second guess the decisions you make.
Ask as many questions, as many times as you need to.
Let the docs be your Google.
Take One Day at a Time
It’s very easy to get overwhelmed with everything that’s coming at you. I had to constantly remind myself that this journey is a marathon, not a sprint, and to take it one day at a time.
In all the pain, anger and frustration, don’t forget to live.
You know your child better than anyone... be their voice, trust your instincts, take time to breathe, (cry, scream, shout, whatever you need to do to get through) and know that you are not alone!
