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A Mother's Impact

Losing her 7-year-old daughter to neuroblastoma primed Erin Santos-Primis to champion her cause

Twelve years have passed since Erin Santos-Primis' daughter Isabella died of neuroblastoma, a rare form of pediatric cancer, at 7 years old, lying in her mother's bed.

Erin's other two children are in high school now. She's happily remarried. A foundation that started with Isabella's friends and family raising $7,000 in a 5K run after her 2007 diagnosis has raised more than $14 million.

The Isabella Santos Foundation has funded research to help improve neuroblastoma survival rates from 40 percent to 80 percent for some patients now. They've helped build a treatment center at the Levine Children's Hospital, recruit a world-renown cancer specialist and provide a place where patients come from 24 countries. They've made it so Charlotte families don't have to fly to New York for treatment.

Santos-Primis has fought the good fight. And now? She is upping her game. When it seemed like she had every reason to move on, ISF is expanding. They're aiming to reach hospitals throughout the Carolinas and beyond.

"I don't know if we could ever shut it down," Santos-Primis said. "It would be like she would die all over again."

Isabella was 2 ½ and her brother Grant was 1, when she was diagnosed. Tummy and back aches seemed harmless until blood work and an MRI revealed an orange-sized tumor on her adrenal gland.

Isabella was treated for nine months and declared cancer-free. The Santos family released balloons, went to Disney, and Erin got pregnant with her third child.

"We had never gone through this before," she said. "I didn't think about it coming back."

When she relapsed, doctors suggested Isabella learn how to meditate to get through difficult treatments. For an hour, as she got chemotherapy, she would concentrate on music.

"She kind of went into a zone and figured out how to get through it," Santos-Primis said.

Between treatments, Isabella became a poster girl - literally - for causes like the Make-a-Wish Foundation, the Ronald McDonald House, and Community Blood Center.

"In the summers, when kids were at the pool, she was walking around the Spectrum Center collecting money," Santos-Primis said. "There was a huge convention in town and there she is, walking around with a coffee can, giving people stickers if they gave her money for the Ronald McDonald house."

Isabella told her mom she wanted to help her friends get better, and she tried for as long as she could. But her cancer kept relapsing - twice more in her brain, once in her bones and finally along her spine. By then, nobody had to say it was the end.

"She was just so calm and at peace with it," Santos-Primis said. "There was no fear. It was eerie but comforting as a parent."

They'd been given a book called "Water Bugs and Dragonflies."

"It's about this family of water bugs that lives in a pond," Santos-Primis said. "Every once in a while, a water bug will climb up a stem and you'll never see it again. It becomes a dragonfly. The dragonflies try to hit the water to come back to the family, but they can't. We had explained to her this crazy story about how we all live together, but eventually you'll go be somewhere beautiful, and we'll all be there someday."

As many times as she's re-told it, Santos-Primis still chokes up by the end.

"It's so silly, right?" she said, through tears. "But she was 7."

As hard as the words are to say, Santos-Primis knows the power they hold.

After COVID forced her to cancel their 5K, she hosted a women's coffee in a church basement. They raised $60,000 in one morning.

Meeting women in smaller groups has become a priority. This October 29-31, Santos-Primis is inviting 300 guests each day to Carmel Country Club for an Alice in Wonderland Mad Hatter-themed brunch club.

"Women get dressed up and come with their friends and they hear stories that touch their heart," Santos-Primis said. "Our backbone is women with kids. They get it. They're like 'I don't know what I would do if that were me.'"

Her husband, Blair Primis, who is marketing executive in healthcare, reminded her that even if it feels like "everyone" in Charlotte already knows about ISF after all this time, it's really just a small percentage of people.

"Just to be able to go from 1 percent to 2 percent is $4 million," said Santos-Primis, who said her organization is still focusing on local fundraising efforts. "There's a lot of work we could do to expand here first."

We had never gone through this before. I didn’t think about it coming back.

Our backbone is women with kids. They get it. They’re like, "I don’t know what I would do if that were me."

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