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Rehoboth girl battles pediatric cancer

Rylie Maedler triumphs over tumor and now fights for other children
November 15, 2014
Rylie Maedler has vivid memories of her encounter with cancer and a joy box that was given to her before her tumor turned out to be benign. BY MOLLY MACMILLAN

Last year, 8-year-old  Rylie Maedler learned she had an aggressive form of cancer.

The Rehoboth Elementary School student was minutes away from a spinal tap and the beginnings of chemotherapy when fate stepped in, and the procedure was called off.

Now, barely one year later, Rylie is healthy again, but she's still on a mission to fight pediatric cancer, just not in the way she had expected.

The tumor

Rylie's close encounter began when she developed cold-like symptoms that kept getting worse over time. Her parents, Janie and Sean Maedler, said visits to a pediatrician and allergist were inconclusive, but their daughter's eyes seemed different, Janie said, and the allergist confirmed one of Rylie's nostrils was blocked.

Just a month later, Rylie's teeth began to appear crooked, and her mother said she complained of pain in her mouth. As the family debated whether to go to a dentist or an orthodontist, Rylie's tooth popped out.

Her mother was frightened.

"I called my dad crying and said, "something is serious here," Janie recalled.

The next day, she roused the family early and as they made the two-hour journey to Wilmington, she called A.I. duPont Children's Hospital, pleading with them to see her daughter.

There, doctors evaluated Rylie and ran some initial tests. Once finished, Rylie and her family were sent home.

It wasn't long before doctors told them to come back.

The testing

That's when, after months of misdiagnosis and misdirection, CAT scans revealed Rylie had developed an aggressive tumor that was disrupting her breathing and vision and dissolving the roots of her teeth.

The doctors scheduled an MRI two days later;  from there, Janie said, they were sent directly to oncology.

"We were going one way with it, and as soon as he said oncology, the brakes screeched," she said. "In my family, cancer is like a death sentence."

While Janie and the family struggled to adjust their attitudes about cancer to help Rylie, the Pediatric Cancer Foundation offered encouraging gifts and support for Rylie as she prepared to battle for her life.

Convinced they were dealing with a fast-moving cancer, doctors advised that Rylie immediately begin treatment, scheduling surgery and a spinal tap to install a chemotherapy port just days after the MRI had shown how aggressive and invasive her tumor had become.

The night before her daughter's surgery, Janie prayed hard.

"I laid awake, and I just stared at her that night because I knew she was about to be thrown into a grown-up world," she said. "The night before, I just begged God for it to be wrong. I would have sold anything, given anything."

Despite their fears, Sean recalled his daughter approached the situation with determination and resolve.

"We told her we had to take control of it, and she got right up and got in the car," Sean said. "We were already convinced she had it, and we were ready for them."

The surgery

On the morning of surgery, Janie said, her family stayed in a private waiting room while she held Rylie down to be sedated.

After Janie returned to the waiting area, the family was surprised when Rylie's surgeon entered the room less than an hour later with a smile on his face.

"He looked at us and said, 'the adventure continues,' " Janie recalled.

The doctor said before starting the surgery, he ran a bone sliver biopsy, and as a result, pathology was no longer convinced Rylie had cancer.

The planned procedure was halted, and after a small celebration, the doctors prepared for more work to find out what this was.

Ten days and 46 tests later, doctors finally diagnosed the tumor as an aggressive giant cell granuloma, an invasive tumor that mimics cancer but is not malignant.

Though she would still need to undergo surgery to remove the tumor and reconstruct her face and palate, Rylie did not have cancer.

The family was overjoyed.

The activist

Now, the surgeries are complete, the tumor is gone, and Rylie has a clean bill of health. But she is still fighting pediatric cancer.

This time she is battling to raise funds, working to help children and families who are still fighting the disease she escaped.

"In the Bible it says Jehovah gives people what they can handle," she said. "He probably knew we couldn't handle cancer."

Recently, Rylie gave her first presentation to the Rehoboth Beach Rotary Club, telling her story to raise awareness about pediatric cancer. For nearly eight months, she said, she has been "fluttering" the households of sympathetic friends and family.

The fundraiser requires Rylie to scatter dozens of dragonfly lawn ornaments at a house and the fluttered homeowners make a donation to have them removed. Funds raised through Rylie's project go to Unravel, a pediatric cancer nonprofit founded by the mother of a girl who lost her battle with the disease.

More than $1,800 later, Rylie has already become a top fundraiser, helping other families handle the cancer diagnosis and providing young patients with gifts and support services.

After her experience, the industrious 8-year-old said she hopes to start a foundation that will provide sick children with phones and iPads, and she has already found an accountant willing to donate her services.

As for her parents, the Maedlers agreed that they got a second chance that many other families don't get.

"We were given a miracle, whereas other families were not," Janie said. "We feel like we have to fight for them."

For more information about Rylie Maedler's experience and upcoming Unravel Pediatric Cancer fundraisers, visit her Facebook page, Rylie's Smile.