Lia Goh

This story appeared in The Globe and Mail.

As a preschooler, Lia Goh of Oakville, Ont, was unaware that her life was anything but typical: living in hospital for months on end, enduring countless needle pokes, as well as repeated bouts of joint pain and nausea. Nor could she have understood the anguish and terror her parents were feeling at the time.

At just three years of age, Lia was diagnosed with acute lymphoblastic leukemia (ALL), an aggressive blood cancer that decimates the supply of healthy blood cells responsible for fighting infections, normal blood clotting and carrying oxygen throughout the body.

According to the Leukemia & Lymphoma Society of Canada (LLSC), in 2019, 225 children in Canada aged 0-19 were diagnosed with ALL (excluding Nova Scotia and Quebec). Symptoms can include fatigue, shortness of breath, dizziness, frequent infections, fever, bruising easily and weight loss. Treatment typically involves long-term chemotherapy.

While Lia’s chances of survival were excellent – 90 per cent – that recovery came at a steep price.

Although Lia’s memories of that period are mostly positive over the next two-plus years, repeated rounds of harsh chemotherapy would hobble her immune system, cause her hair to fall out and her muscles to weaken. Also, because catching a normal childhood infection could prove life-threatening for Lia, being in treatment was extremely isolating.

“Other than one other little girl [a fellow patient], I really only played with my brother,” says Lia. “We spent a whole year and a half in the hospital together.”

For some children, the long-term effects of ALL and its treatment can be serious, including heart damage, bone damage and cognitive effects, which can affect a child’s ability to learn and think in class. Growth and development may be stunted and puberty may be delayed.

Improving the lives of children with blood cancers

Years after undergoing cancer treatment, Lia grew to understand the impact that a diagnosis like hers could have on other kids and their families.

“I’m very grateful for my family, and we were very fortunate in the sense that we had the financial means that my parents could take time off work,” says Lia, now a vibrant 15-year-old who loves English and art and playing hockey.

“Now that I’m older, my dad told me he remembers a single mother with three kids whose youngest was going through chemo, and that he couldn’t imagine how difficult that would be,” Lia says.

The single mother told Lia’s father how supportive the LLSC was during that challenging time. “That’s one of the things that gave my family the idea to get involved,” she adds.

Determined to do what they could to improve the lives of the more than 155,000 Canadians currently affected by a blood cancer, Lia and her family began participating regularly in the LLSC’s annual flagship event, Light The Night.

During the Light The Night season – from spring to fall – families and friends, including Lia’s, organize activities to bring awareness to blood cancers while fundraising. Their efforts culminate in a nationwide virtual celebration with this year’s airing onLightTheNight.ca and illuminelanuit.ca on October 22 at 7 pm EST. It’s free to register and available to anyone, and donations are going further than ever before.

Until the COVID-19 pandemic, the Light The Night celebration was hosted in-person in multiple cities throughout the country. Since 2020, Light The Night shifted to a digital fundraising experience and celebration, giving more people the opportunity to take part in a way that feels safe and suitable to them. Since the change to digital fundraising, the LLSC has reduced overhead costs nearly by half, freeing up more funds for what matters most, raising $XXX last year.

Alicia Talarico, president of the LLSC, says that the funds raised through Light The Night allow the organization to support programs and services for people with a blood cancer, as well as funding research to accelerate advances in treatment.

“The good news around [leukemia in] children is that the survival rates are pretty high – 90 to 95 per cent – but if you don’t fall into that group, obviously, that’s devastating,” she says.

In addition to the grueling short-term side effects of blood cancer treatment, treatments can sometimes cause lasting cognitive and developmental issues. “There’s a lot of life after cancer for these children, [so] that can be very difficult,” Talarico says.

“Our goal as an organization that funds blood cancer research is to reach 100 per cent survival and give people the opportunity to live a better quality of life after treatment.”

‘It’s a big year’

On the support side, the LLSC offers a wealth of resources and services for children, parents and caregivers, such as its new, easily navigated website bloodcancers.ca and its First Connection peer support program.

First Connection matches someone who has been diagnosed (or a parent of a child who’s been diagnosed) with a volunteer who’s been through the same thing and is on the other side,” Talarico says.

This year, Lia is celebrating her 10th year of survivorship – a milestone that means her chances of recurrence have now dropped below one per cent – by co-chairing Light The Night.

“It’s a big year – we’re all very excited,” she says. “I’m drawing in my family, my friends, my school and my company,” she adds. (Lia is one of seven teenaged founders of Howdi.love, a video celebrity greeting service that donates a portion of its proceeds to charities.) And she’s urging people across Canada to join in as well.

“We’ve set my ‘In My Lifetime’ campaign [goal] to raise $100,000 [and] to get to 100 per cent survival,” she says.

While that may seem like a lofty goal, based on past strides in progress, there’s every reason to believe it’s within reach.

“My oncologist told us that if I had been diagnosed just 10 years earlier, my chances of surviving would have been 50/50,” says Lia. “In one decade, it went up to 90 per cent. It’s so inspiring to see the progress [that’s been] made.”

Meanwhile, progress is being made when it comes to improving treatment for kids with blood cancer. The LLSC introduced Pediatric Blood Cancer Research Innovation Grants to advance childhood blood cancer research in Canada, awarding nine grants this year.

From better understanding the safety of childhood blood stem cell transplants to developing novel and less harmful treatments for blood cancer, researchers are working to improve the quality of life for kids like Lia.

For more information or to register for Light The Night, go to lightthenight.ca.