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Greece girl battles rare childhood cancer

Greece, N.Y.—It’s still summer, but at the Nagel family’s home in Greece, it’s Christmas time.

Their Christmas tree still stands in the corner of their living room, adorned with Disney characters.

This holiday celebration is all for Chris and Wendy Nagel’s only child. Their four-year-old daughter, Ashley. Christmas is Ashley’s favorite holiday and the family is celebrating together one last time.

Ashley suffers from Pontine Glioma, a rare form of childhood cancer where a tumor forms on the brain stem. She was first diagnosed at 15-months-old.

Wendy explains the disease usually appears in children over the age of four, but for whatever reason, it hit Ashley early on.

Because of Ashley’s age, doctors were optimistic that she would beat the cancer. After a year of chemotherapy treatments, the tumor disappeared.

“She looked like a normal kid,” Wendy said. “You would never know that she had cancer. She was playing, running and just being silly and loving.”

For a short time, Ashley lived her life live any four-year-old would. She loved preschool, went to Disney World and played with her Disney Princess dolls.

But his past October, Chris and Wendy noticed Ashley was acting differently.

“Her walking became a little unsteady,” Wendy recalled. “She was a lot more moodier and didn’t want to go to school.”

Doctors confirmed what the Wendy had suspected. The cancer was back, but this time around the chemotherapy treatments did not work. Chris and Wendy made the difficult decision to stop Ashley’s treatments and let her comfortably live the rest of the time she had.

For nearly a year, the Nagels and their family have lived with the realization that one day Ashley will no longer be here.

“As many times as you think about it, you can’t put it into words,” Chris said, fighting back tears. “ This is your first child. You think that you’re going to get them through life and school, but my heart is broken. Very broken.”

At this point, Ashley is confined to a wheelchair. She has gained weigh due to her steroid medication.

Still, Chris and Wendy do the best they can to make her as comfortable as possible and to make sure Ashley gets to do everything she wants.

“I just try and make each day as fun as it can be,” Wendy explained. “There are lots of laughs, lots of hugs and kisses and a lot of ‘I love you’s. It’s just so hard to think of her not being here. It just breaks my heart. It really does.”

In her short life, Ashley has made many friends and touched many people. She even has a boyfriend.

“Ashley and her boyfriend went to preschool together,” Wendy said laughing. “They’ve got this bond between them. You would think they were an old married couple. He just adores her and she adores him.”

Even now, they see each other often.

Chris and Wendy say they would not have been able to go through this experience with Ashley, without the support of their family and friends. In the past three years, there have been several fundraisers for Ashley and her family put on by their friends.

The couple doesn’t know what life will be like once Ashley is gone or how they will handle their grief. What they do know is that their life has been made better by them knowing and loving Ashley.

“She has taught me strength and courage,” Wendy said through tears. “Just how to love. Just loving the person on the inside and just the courage this little girl has for being four and a half years old is just incredible.”

The Nagels say there isn’t much research done on Pontine Glioma because it so rare.

Pontine glioma accounts for only ten to 15 percent of all childhood brain tumors and survival past 12 to 14 months of diagnosis is uncommon.

The family hopes to share Ashley’s story to raise awareness about this disease to help spur research on Pontine Glioma. 

 
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Washington Times