MELISSA'S BLOG: Fighting the big, bad wolf

Parker Monhollon (Photo submitted)

(WIBW) - "No one thought it was the big, bad wolf."

In the fall of 2014, I sat in a living room north of Topeka and chatted with a 15-year-old girl about the book she'd received. It walked her through planning her own funeral.

Morgan Kottman was fighting DIPG. It's an extremely rare brain tumor, she and her family were told, with a current survival rate of zero. Morgan enjoyed a brief respite before the tumor found new life, erupting in a matter of weeks from a re-emerging spot to the unmistakable force dominating new images of her brain.

The night our story aired on the news, Morgan was undergoing emergency surgery in hopes of relieving her symptoms and buying more time. A week and a half later, she was gone.

The words to her family with which she ended our interview echoed in my ears.

"They'll be okay," she said.

Barely more than a year later, I learned of another young girl. All of eight-years-old, her school nurse suggested her parents get a closer look at her headaches and wandering eye.

"No one thought it was the big, bad wolf."

Those are the words nurse Ann Rupp used to describe DIPG when I visited Silver Lake Elementary School to first share Parker Monhollon's story and the movement that would become Parker Loves Life.

If this disease is so rare, why was I meeting another family of another person far too young who was diagnosed? Why was her latest YouTube video not a crazy-talented dance routine or a tour of her room, but telling the world, "They said I have a brain tumor."

Yet, just like Morgan said she couldn't not do something, Parker and her family fought like crazy. For as many of the 541 days of that fight as she could, Parker would post a video ending with an enthusiastic, "Bye guys!" and blowing a kiss.

Morgan changed me. Parker changed me even more. The legacy of both isn't just how to fight - but that we need to fight.

"There are some who believe that we solved the childhood cancer problem. We haven't," Dr. Peter Adamson of the Children's Hospital of Philadelphia, who heads up the nationwide

Children's Oncology Group, said in an interview shown on CBS Sunday Morning back in March and again this past Sunday, the day after Parker's memorial.

We know this all too well. In between Morgan and Parker, we lost the beautiful Mia and young Blake to different forms of cancer. I've seen kids like Luke and Bryson and Rachel and Karis and Berkeley and Max ride the roller coaster that is life with cancer.

About four percent of The National Cancer Institute's budget goes to studying childhood cancer. Dr. Adamson says we must do better.

"We're curing children today that 10 years ago we knew we couldn't cure, and that only comes through research," he said on CBS Sunday Morning.

We still need research, because we are still losing lives. For all the progress, a diagnosis of DIPG is still accompanied by the harsh reality that no one has survived it. The Kottmans and the Monhollons and all of these families share their stories and open their lives because they want us to do better, not only for them, but for the families who will follow.

"No one thought it was the big, bad wolf."

How do we beat the big, bad wolf? We fight. Morgan and Parker led the way.