Elaine “Lainey” Lui is best known for being in front of the cameras as a co-host on CTV’s The Social and the senior correspondent on etalk. What fans may not know about her is that off-camera, she focuses on being a caregiver for mother Judy Yeung, who’s receiving treatment for POEMS syndrome, a rare blood disorder.

POEMS is an acronym that stands for the signs and symptoms of the disease:

Polyneuropathy
— tingling and numbness in the legs.

Organomegaly
— enlarged liver, spleen, or lymph nodes.

Endocrinopathy  
— abnormal hormone levels.

Monoclonal plasma proliferation disorder
— abnormal bone marrow cells.

Skin changes
— more colour than normal, increased leg and facial hair.

It’s a type of multiple myeloma, a cancer of the plasma cells which are located in our bone marrow, and affects more than 2,500 Canadians each year. Though incurable, advances in treatment options have boosted the survival rates for myeloma, allowing patients to lead full lives.

POEMS syndrome was something that neither Lui nor her mom had heard of before doctors made their conclusion. It took a few years to get answers, but Lui has been with her mom every step of the way, from a kidney transplant in 2002 to a recent bout of pneumonia in early summer. She has tended to her physical and emotional needs. “I feed and bathe her,” says Lui, “but I’m also her advocate, her ambassador, and her translator. I’m the one pushing for answers and making sure I get the best work possible out of her doctors.”

It can be very demanding when parent and child reverse roles, with the daughter turning protector and guardian. Lui’s mother prepared her well. She taught Lui a lot about questioning the status quo and being frank and direct. It’s a skill that has served Lui well in her career and as a caregiver of someone living with cancer.

It can be stressful, but there are many moments of joy, too. “My mom is incredibly funny,” says Lui, who lives in Toronto with her husband Jacek and beagles Barney and Elvis. “My friends and family love being around her. She has almost no filter and says exactly what’s on her mind. That creates some hilarious moments.”

Lui’s life is a busy one, split between the demands of being a successful television personality, running her popular website LaineyGossip.com, and being a wife and a daughter who helps her mom navigate her way through a complex illness. But Lui has found valuable lessons and things to be grateful for in the midst of it all. “I’ve learned that it’s important to de-stress, whether it’s hanging out with my dogs or exercising,” she says. “And you’ve got to have fun and make the most out of life.”