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11-year-old with rare cancer blogs to show good and bad sides of disease

When Nevaeh Williams was just 8, she was diagnosed with an extremely rare cancer. Doctors were unsure if she’d ever be cancer-free, but the treatment worked and she enjoyed two years playing softball, enjoying math class with friends and just being a kid. This August, a scan revealed the cancer had returned and her mom, Alana Simmons-Williams, was distraught.

“I’ve always had a little bit of anxiety when it would be time for scans but the anxiety was starting to ease,” Simmons-Williams, 34, who lives outside of Savannah, Georgia, told TODAY. “At her two-year scan (the doctor) told me the cancer came back. I was devastated, like heartbroken. I want to say it was worse than hearing it the first time.”

For two years, Nevaeh enjoyed life like any other child her age. But at recent scans, she and her family learned her rare cancer had returned. (Courtesy Nevaeh's Victory Against Cancer)
For two years, Nevaeh enjoyed life like any other child her age. But at recent scans, she and her family learned her rare cancer had returned. (Courtesy Nevaeh’s Victory Against Cancer)

But Nevaeh, now 11, had a different reaction.

“For her going through it a second time, she’s like, ‘OK, the first time they told me I wasn’t going to be able to be cancer-free at all and I did it. I beat it,’” Simmons-Williams said. “She wanted to blog her journey … She was like, “I want to record it this time. I want to show everyone what it’s like.’”

A shocking diagnosis

One day when Nevaeh was 8, she was doing a cartwheel when Simmons-Williams noticed her daughter’s stomach was bloated. Simmons-Williams asked her daughter if she felt sick or was constipated, but Nevaeh felt fine. They visited their pediatrician who recommended they go to the emergency room.

At first doctors believed Nevaeh had Ewing sarcoma, a cancer that affects the bones. But Simmons-Williams didn’t think that’s what Nevaeh had and pushed for another opinion.

“She didn’t have any problems with her bones. She just had a tumor in her stomach and tumors throughout her chest wall,” she said. “That’s when it was revealed that it was desmoplastic small round cell tumors.”

Desmoplastic small round cell tumors are so rare that there are only 200 known cases of it since 1989, according to the National Cancer Institute Center for Cancer Research.

“There is no standard treatment plan for DSRCT,” Simmons-Williams explained. “They commonly use the treatment plan that they use for Ewing sarcoma.”

Nevaeh, 11, gives her social media followers an unfiltered look about what having cancer is like. She finds strength in the support she receives. And, they learn more about cancer. (Courtesy Nevaeh's Victory Against Cancer)
Nevaeh, 11, gives her social media followers an unfiltered look about what having cancer is like. She finds strength in the support she receives. And, they learn more about cancer. (Courtesy Nevaeh’s Victory Against Cancer)

They removed the mass in Nevaeh’s stomach, which was three pounds, and she also underwent hyperthermic intraperitoneal (HIPEC) treatment where doctors fill the abdomen with warm chemotherapy drugs to “wash” it. While she remained cancer-free for two years, doctors spotted a recurrence during her most recent scans and she began treatment in August.

“She doesn’t give up that easy,” Simmons-Williams said. “She has positive vibes.”

Vlogging through cancer

Before the cancer returned, Nevaeh’s hair had started growing