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

While facing a rare cancer for the second time at 11 could be scary for most, Nevaeh Williams is sharing her experience on social media to inspire others.
/ Source: TODAY

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

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

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 back and she rejoined her travel softball team, playing second base, shortstop and centerfield. Nevaeh loves playing board games with her family and playing basketball outside when she can. While her mom was frightened by the cancer’s reoccurrence, Nevaeh is facing it head on.

“I beat it the first time. Why couldn’t I do it a second time?” she told TODAY. “People really want to help me get through it … and that makes me want to get up and dance and beat cancer’s butt.”

Despite having to undergo chemotherapy and radiation for a second time, Nevaeh, 11, feels upbeat and ready to "kick cancer's butt."Courtesy Nevaeh's Victory Against Cancer

She said that people often asked her about her cancer or treatment and she hoped that showing them her experience would help. Mom has the last say on the final edit, though.

“I decided to record it to show people that there are some good sides and there are some bad sides,” Nevaeh said.

While seeing the supportive responses keeps her strong through her chemotherapy and radiation treatments, she also encourages others.

“A lot of people say I really motivate them to get up and get through whatever they’re going through,” she said. “It makes me feel really happy because I like to see people smile and I like to motivate people.”

She hopes that people who follow her journey on YouTube or on Facebook at Nevaeh’s Victory Against Cancer and Instagram will feel inspired.

“Anything is possible as long as you believe,” she said.

Simmons-Williams feels sad that her daughter is again undergoing treatments that slow her growth, make her feel ill and cause her to lose her hair.

“She was adjusting and getting back to normal life,” Simmons-Williams said. “I had seen her blossoming … All of that is put on hold when you start chemo.”

As Nevaeh shows followers unfiltered life being treated for cancer, she often hears from others going through the same thing. That keeps her motivated even on bad days. Courtesy Nevaeh's Victory Against Cancer

Yet, she feels overwhelmed that supporters’ kind words strengthen Nevaeh. She also hopes that her story increases awareness for more pediatric cancer research and treatment. According to the National Pediatric Cancer Foundation, only 4% of the billions spent on cancer research are spent on childhood cancers.

“Some of the chemo medicines that they are giving out are over 50 years old,” she said. “Kids are on the same treatment plans as adults. There's no separate medicine for children.”

For now, she feels impressed by all the good Nevaeh is doing by sharing her story.

“They can see that even on your worst days you have to push through,” she said. “She inspires people through the same thing.”