Chordoma Foundation

“Overachieving” survivor beats rare cancer diagnosis

Alicia Jeffreys with husband, Darrell, and their daughters Mikayla, Kaia, Amaya, and Ava

It was Alicia Jeffreys’ birthday, and she was all smiles — a typical disposition for the cheerful young professional, who turned 28 that day in 2008. She was looking forward to a celebratory dinner with her husband, Darrell, and extended family. On the way to the party, Alicia made a quick stop at her doctor’s office: two weeks prior, she’d undergone an outpatient procedure to remove what they thought was a cyst near her tailbone. Her surgeon wanted to confirm that the stitches had healed.

Alicia remembers the look of surprise on the doctor’s face when he skimmed the tissue pathology report that day. “He left the room to ask a colleague about the results. When he came back in, he told me I had cancer,” she says. Adding to Alicia’s shock was the realization that her diagnosis was chordoma, a type of tumor so rare that it affects just one in one million people per year. “He’d been practicing medicine for decades, but he hadn’t seen chordoma since he was in school,” Alicia says. “It was disheartening to see him stumble through explaining the diagnosis, and to hear him say, ‘I need to get back to you later when I know more.’”

Alicia still attended her birthday party, though it was no longer the boisterous celebration she’d anticipated. “Dinner was very quiet,” she recalls. “Everyone was crying.”

Another uncommon twist

Like many navigating the aftermath of a rare diagnosis, Alicia took it upon herself to gather information and decipher the best next steps. Eventually, a family friend referred her to an experienced chordoma team at Massachusetts General Hospital. There, radiation oncologist Dr. Thomas DeLaney and surgeon Dr. Francis Hornicek (now at the University of Miami) gave her a full workup — which unearthed another unpleasant surprise. While chordoma typically appears in one of three locations along the spine, Alicia had tumors in each spot: an extraordinarily rare trio called multifocal chordoma. “I guess I’ve always been an overachiever,” Alicia jokes.

Despite the magnitude of what she was up against, Alicia was confident in her care team. “They didn’t just want me to survive, they wanted to help me live the long, full life I’d planned,” she says. “They were compassionate. They listened and learned what my motivation was — to start a family — and designed my treatment plan in support of that.”

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Alicia and Darrell

Throughout the grueling three years of treatments that followed, including seven surgeries and 116 radiation treatments, Alicia’s dream of becoming a mother served as her anchor. “That was the driving force that pulled me through my most difficult moments,” she says.

 

Better birthdays in store

At last, Alicia’s doctors declared her cancer free in 2011. She rang a bell at the hospital to celebrate the end of one chapter, and prepared to start the next one — the sooner the better, as far as she was concerned. “I immediately asked Dr. DeLaney, ‘When is it safe for me to start a family?’,” Alicia says. “I’d waited such a long time.”

Happily, about four years after her life-altering 28th birthday, Alicia and Darrell celebrated another remarkable birth: that of their newborn twin girls. And five years later, in the next miraculous life event, a second set of twin daughters joined the family. The girls are now four and nine years old, and the family that Alicia long dreamed of is thriving.

“With four daughters, let’s just say it’s very emotional in my house at times,” Alicia laughs. “And I get stressed out like any normal parent. But I think I snap out of it a little more quickly because of the unique perspective I have,” she adds. “At the end of the day, this is 100% what I wanted.”

 

“One in a million, but not alone”

When Alicia reflects on the support that carried her through the years of cancer treatment, she credits her medical providers, family, friends, and coworkers — she’s worked with the Detroit Pistons for 20 years and describes her colleagues as a major rock in her life.

Finding the Chordoma Foundation also gave her comfort back then, she says. The organization was still in its early stages, but she connected strongly with the story of Josh Sommer, co-founder and Executive Director of the Foundation. Like Alicia, Josh survived chordoma as a young adult. “It was so inspirational to see that someone cared enough to try to help other people with the same diagnosis,” Alicia says. “Josh was totally committed to finding treatments and a cure. His story was proof that someone out there cared. And that even though I’m one in a million, I’m not alone.”

Now, Alicia is telling her own story in hopes of doing the same for others. “The way my life has turned out, you’d never know what I went through a decade ago,” she says. “And that’s my message of hope for people who are in the middle of it right now: there can come a day when your life will be so much better.”

If you have an Uncommon Story to tell, we invite you to share it to help others in the chordoma community feel more connected. And if you or someone you love has been diagnosed with chordoma, our Patient Navigators are here to help you get the best care possible.



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