Alberta man who fought to raise profile of stem cell donors too ill to undergo treatment

An Alberta man too sick to receive the stem cell transplanthe has been waitingforis pleading with people to continue to register as stem cell donors, and potentially save the lives of others.

BilleNguyen, a 25-year-old Edmontonian diagnosed with an aggressive blood cancerin January, was matched with a stem cell donor his own sister but recently discovered he is no longer a good candidate for the procedure.

"However, there are a lot of people out there still who aren'teven at this point," he said."They're just sitting there waiting, every day, for a call that might never come."

Aftersix rounds of chemotherapy and months of searching, hewas supposed to have been well enough toundergo the stem cell transplant from his older sisterSusan Nguyen at the end of July.

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Right before the transplant was scheduled to take place, the family found out his cancer was growing again and the transplant was pushed back a month.

He was put on drugs to quiet the cancerbut they didn't work. The transplant has now been cancelled indefinitely.

He's undergoing chemotherapy once againwith a treatment that is less harsh but more frequent.

"There are times when you sit there and you're like, 'Am I going to make it the next day? Am I going to be around in a few years?' " he said. "It's not a fun feeling and I don't want anyone to feel that way."

That's why he and hisfamily is focusing on progress, one way or another, by continuing to run the stem cell swab events they started when they learned of his illness.

'It's just heartbreaking'

Susan Nguyen was devastated to learn she wouldn't be able to donate stem cells to her younger brother.

"We were counting the minutes until the transplant and then the week before, we get shot down and back to square one again," she said. "Ifeel like we're even below square one now and it'sjust heartbreaking.

"The plan is that he gets chemotherapy until his cancer goes into remission ... or changing up the chemotherapy protocol until his body can't handle it anymore."

Susan Nguyen said her brother's positivity and focus on helping others is whatkeepsthe family going.

"We want to still continue to raise awarenessand use our story, even though it's a sad one. ... It's a chance, a way to get out there and raise awareness."

'We want to increase everyone's chances'

While BilleNguyen matched with hissister, the likelihood of siblings matching is only 25 per cent.

With such low odds, the family ran several stem cell swab events to try to recruit potential donors for him.

"I would like to take the momentum that Ihave, everyone who's shown up for swab events that we have had, I'd like to take that momentum and keep it moving," he said.

According totheCanadian Blood Services website,less than 30 per cent of registered stem cell donors come from ethnically diverse backgrounds.

The organization's One Match database, which tracks stem cell donors and transplants, shows there are other people still waiting for a match.

Susan Nguyen added up the number of people of Asian descent: 181.

A drop-in stem cellevent calledUnited Asia, put on byOne Love Event, will take place on Saturday in Edmonton at the Foundry Room, 10528 108th St. Those interested in seeing if they match with people on the transplant wait list or want to be added to the pool of potential donors can stop by between 9 a.m. and 6 p.m.

"We want to increase everyone's chances," he said.

roberta.bell@cbc.ca

@roberta__bell