What advice do you have for other ependymoma parents?

— Categories: Ependymoma Community Posted on September 15, 2021

We asked our community to share their advice for other ependymoma parents with a newly diagnosed child. We received numerous responses. Thank you for your participation! Read their advice for pediatric ependymoma families.

Find Support

Find a support group online ASAP. This will be the quickest resource for you.

Join a support group, such as the Ependyparents group on Facebook - an excellent recourse and fountain of knowledge.

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.

Join the Ependyparents Facebook group. Life as you know it is not going to be the normal you were used to. You will lose friendships and family will also be different. They are that way because they don’t truly understand what you are feeling so they’ll never understand what you are saying or what you need from them. But this group allows for you to vent, to virtually scream at the top of your lungs, because we have been there, we understand, and we’ll never judge.

Take Notes

Buy yourself a notebook to write down any information and questions you may have. Write down the dates, doctors you talked to, what they said, and every little detail.

Bring a notebook, and better yet, a close family member or friend who can listen or take notes as well. It’s hard to take it all in and remember all that is said.

Seek Out Knowledge

Research your hospitals and doctors and choose wisely, but never second guess the decisions you make.

You don’t have to stay “in house” for treatment.

Make sure the facility is the best to treat ependymoma. If your child has surgery, make sure the PICU is equipped to handle any complications following surgery. Make sure they are equipped to monitor your child extremely closely.

Ask as many questions, as many times as you need to.

Research and educate yourself with every option out there. Listen to your consultant but don't be afraid to question them.

Let the docs be your Google.

Educate yourself through published studies and dictionary in hand to look up things. You are now your childs advocate for care. Ask questions, lots of them, and take it one appointment at a time!

Take One Day at a Time

Make every moment count.

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.

With each step there’s a bit more light. It’s a dark shadow behind us, and sometimes I turn around and look and think, ‘wow we went through that.’ But it is where it should be, behind us and we got through it. Be proud of your accomplishments and strength, no one can take that away from you.

Allow yourself to feel every emotion because it’s such a tragic situation to go through and watch your child go through. It’s an emotional path.

In all the pain, anger and frustration, don’t forget to live.

Never lose hope.

Take Care of Yourself

Don't forget yourself. Look after yourself as best you can. Take time out. Build in treats for your family any way you can.

Breathe. Pray. Leave the hospital when you need a break. Don't forget to take a break.

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! You're entering a world that you weren't prepared to be a part of. You will learn as you go, and there will be ups and downs.

It’s so all so consuming that I decided to write a journal. It helped me get through through those first few days. People try to understand but unless they have been through something similar they can’t. It’s not their fault. At the time I felt anger about people’s reactions. Some were disinterested, some talked over me, some ignored me or pretended they didn’t see me, some apologized for not being in touch and others said they’d asked after me through other people. Some even had their own version of events. So I checked out for a while, and that’s when the diary helped. It helped me put those emotions onto paper, rather than upsetting those people who unknowingly were upsetting me.