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Parent to Parent

Advice for Raising a Child with Cancer

by Ellie Ewoldt

Photo by Cancer Type

Ellie Ewoldt and her son Chase share a smile.

Get on their level.
Try to explain the situation in their terms. Maybe their tumor has a name, or may­be it’s not a tumor at all, but a big ball. And maybe the IV stabilizer that wraps around their arms is a big, fluffy taco. Just because your child is in a hospital, that doesn’t mean they stop being a child – if anything, they need to find areas of whimsy or lightness even more than normal. Don’t be afraid to speak openly on their level.

Set realistic expectations.
There are only so many hills you can choose to die on, and keeping up with average age-related milestones shouldn’t be one of them. Each small accomplish­ment for a cancer child is a huge victory. My son Chase was potty-trained and learned to ride a bike all in the same year – when he was five. But once upon a time, we weren’t even sure if he’d live to see three. So find what works for you and your cancer child, and be comfortable there.

Be prepared.
Raising a child with cancer involves carrying around more than a purse stuffed with crayons or Legos. (Seriously, how do they keep getting in there?) I carry a bag with gloves, alcohol swabs, clamps, all the supplies needed to triage a central line, as well as a rescue medication in case of a seizure, and it goes everywhere that Chase does.

Just because your child is in a hospital, that doesn’t mean they stop being a child.

Learn to celebrate.
Find ways to celebrate the good moments and days. Of course, we would prefer Chase’s memories to be of running in the park, but I’ll run down the hospital hall as he blows through a crowd of doctors, yelling, “Gentlemen, start your engines!” I’ll make paper airplanes in the ER. And I will do anything else necessary to make him smile. Never confuse grief over the cancer with grief over a living child. Find ways to celebrate your child and to celebrate life.

Let go of “normal.”
Letting go of the social standard for what a day should look like makes it easier to cope with the curveballs that come our way. For any parent of a child with cancer, “normal” is any trip to the hos­pital where we are behind the wheel, instead of a paramedic. Normal is when we are in and out for tests instead of sleeping overnight in a hospital chair. In truth, “normal” is just a setting on a washing machine anyway, right?

Acceptance is crucial.
Never stop fighting the cancer, but learn to accept its presence. I hated that Chase lay in a hospital bed, weak and worn, but the life lessons I learned from him and the community we found with other pediatric cancer parents, these things were – and are – priceless. In accepting that for better or worse there’s cancer in your life, you’ll be able to move for­ward, to connect and grow in ways you can only imagine.

Savor the moments.
Write things down. You think everything will be engraved in your memory for­ever, and it’s true that many things will, but write it down anyway. There will be many times when you think it can’t get any harder or there is nothing to smile about, but it’s in the looking back that you’ll see even harder moments that you survived and joyful moments that you forgot. Savor those times, and write them down.

Get involved.
In your own time, in your own way, let cancer change your life. I had no idea how terrifying the statistics were or how few drugs there were until it was my son on the table. While our lives hurt like crazy, I believe that we’ve been given our stories to use. Find an outlet (for us, it was the St. Baldrick’s Foundation) and start shar­ing your story and making a difference. It may not change the outcome of our story, but, someday, my hope is that we’ll all be able to join together and say of this wretched disease, “It was, but it is no more.”

♦ ♦ ♦ ♦ ♦

Ellie Ewoldt is a wife, mother of four, daughter, sister, and friend. She is also the author of Chase Away Cancer, to be published next May. Her son Chase was only two years old when he was diagnosed with atypical teratoid rhabdoid tumor (ATRT), a type of brain and spine cancer. Given just a 20-percent chance of survival, Chase started a rigorous treatment plan that included brain surgery, radiation, and chemotherapy. Now at age five, Chase is stable and continues to go in for regular checkups. This year, Chase was chosen to serve as one of the St. Baldrick’s Foundation’s 2015 Ambassadors.

The St. Baldrick’s Foundation is a volunteer-powered charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. Since 2005, St. Baldrick’s has awarded more than $176 million to support lifesaving research, making the Foundation the largest private funder of childhood cancer research grants. Learn more at stbaldricks.org.

This article was published in Coping® with Cancer magazine, November/December 2015.