An Edmonton man of Asian descent who fought for months to find a stem cell donor has been forced to put the potentially life-saving procedure on hold.
Bille Nguyen recently learned he needs at least two more rounds of chemotherapy, so his stem cell transplant has been put off indefinitely.
“Unfortunately his cancer started growing back,” said Susan Nguyen, one of Bille’s three sisters.
“It’s been delayed twice now and now it’s even been cancelled. So hopefully with this round of chemo… It’ll get things under control to a point where we can have a transplant again. But right now unfortunately it’s off the books for now.”
Nguyen has Stage 4 subcutaneous panniculitis t-cell lymphoma – a rare blood cancer. The 25-year-old was diagnosed in January and earlier this year, a doctor gave him a 10 per cent chance of survival unless he received a stem cell transplant this summer.
Finding a stem cell donor can be difficult for anyone, but Nguyen’s Vietnamese-Chinese background made finding a match even more difficult. Only 16 per cent of registered donors on OneMatch are of Asian descent.
Because his best bet for a match is someone of similar ethnicity, Nguyen’s three sisters were tested. But confirmation can take weeks, and his cancer is aggressive. Worried no one in the family would be a suitable donor, the Nguyens organized a number of donor drives, encouraging people of Asian descent to register for OneMatch.
Hundreds of people signed up, and in early July the family received some great news: Nguyen’s sister Susan was a perfect match.
Nguyen was originally scheduled to have his stem cell transplant in Calgary in late July. His sister said if everything with the chemo sessions goes well, the earliest he could receive his transplant would be six weeks from now.
She said the process has been tough but they’re not giving up.
“We count down the days to the transplant, to the days where we can be on recovery rather than treatment. And then we get close to that – every time it’s about a week from the date of the transplant – then we get pushed back again and it’s disheartening every time. But then we kind of pick ourselves up and keep going.
“There’s nothing else to do but keep going.”
The family has another donor drive scheduled on Saturday, in hopes of encouraging more people to sign up to help others in need of stem cell transplants.
“We realized that this problem, it does not just apply to us. This is a wide problem within all the ethnic minority groups,” Susan said.
The drive on Saturday will be held from 9 a.m. to 6 p.m. at The Foundry Room. More information can be found here.
Watch below: Ongoing video coverage of Bille Nguyen and his family’s fight to find a stem cell donor