Mother Gives Advice on Newly Diagnosed

Mother Gives Advice on Newly Diagnosed

Name: Julia M.
Type of Cancer: Grade III Anaplastic Ependymoma
Diagnosed: 2006
By: Sue (Julia's Mom)
— Categories: Brain   Pediatric  

Our daughter Julia was diagnosed when she was 3 1/2. She is now a 6 year survivor and will turn 10 this June! When Julia was diagnosed it was like a nuclear bomb landing upon our young family. I honestly look back and wonder how we made it through.

If I could offer any advice to newly diagnosed families it would be:

  1. To confirm the pathology report and get 2nd and 3rd opinions from top brain tumor centers and Children’s Onoclogy Group Hospitals.
  2. Advocate for you child! As a trained Child Life Specialist I had the unique knowledge that I had a voice and a say in how my child was cared for as hospitals and their procedures are not always family- centered. Speak up! Let them know what works best for your child because you know them best.
  3. Find a support group. Online support groups were my guiding light in those early days. Many offered to talk with us over the phone. Talking with other parents who have walked in your shoes is some of the most valuable advice I can give. It can be scary. Many may shy away because there are some tough moments in these groups, kids are very sick and some will die. Don’t let this deter you from gaining wisdom from those who have been there.
  4. There is so much hope. Grab it and don’t let it go. As Julia was going in for port surgery I was rocking her in the rocking chair outside the operating room (OR). An OR nurse came out and shared with me that her daughter had been diagnosed with cancer and was now a teen active in sports and school. While she gave me the gift of hope, I cried silent tears of gratitude. Now six years later Julia remains cancer free and now I am paying forward her gift to all you. Believe.

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