Alberta family's exhaustive search for donor leads to stem cell transplant for their brother
An Alberta family who spent months trying to find a stem cell donor for their son and brother to help in his battle with cancer ended up finding that lifesaving match within their own family.
Twenty-five-year-old Bille Nguyen was diagnosed with a rare blood cancer in January and his only chance of survival was to get a stem cell transplant.
He has three sisters but with just a 25% chance one of them would be a match for him it was evident the family was likely going to have to rely on a match from a stranger.
However, the percentage of Asian people on the donor registry list is low, so Bille’s sisters held swab events across Canada to try to find a match for Bille and encourage more people of Asian descent to get their names on the donor list.
In the end, Bille’s sister Susan Nguyen was a match.
She spent Wednesday at the Tom Baker Cancer Centre having her stem cells extracted in preparation for Bille’s surgery Thursday.
“It definitely feels good. The chances of matching with a sibling is so low; it’s a 25% chance only and so we definitely feel blessed especially because there are three of us to match to him and only I matched,” says Susan. ”You can see if someone didn’t have a sibling obviously they for sure need a stranger and then 75% of people, even with a sibling, still need to go and find a stranger to match them.”
Bille has been undergoing an intense chemotherapy session to kill his own stem cells.
“A stem cell transplant is a medical procedure that we do to help people with cancer who we don’t think we can cure in any other way,” says Dr. Andrew Daly, the program director for the Alberta Blood and Marrow Transplant Program. “Patients are given high doses of chemotherapy and the doses are given in a range that we wouldn’t ever expect their own bone marrow to recover part of the reason to give people stem cells from a donor is to actually let them produce blood cells on their own; the other reason this transplant can help is by giving the recipient a new immune system and we believe that new immune system can help fight off the cancer.”
Susan also wants people to know that being a bone marrow donor is not painful saying the extraction process feels like she just worked out or has the beginnings of a cold.
“Everyone is so scared when they hear bone marrow or stem cells they think it involves some kind of drilling a lot of screaming but no it’s not as dramatic I wish it was more crazy so I could tell my brother ‘hey look what I did for you’ but really it wasn’t anything at all,” she says.
Susan is also urging people to get tested to help 16-year-old Roshlind Mance who needs a stem cell transplant to battle two rare blood diseases.
“We’re of Filipino descent and because stem cells are matched through DNA and not blood she does need an unrelated Filipino donor and in the stem cell data base there’s only a 1% Filipino donor pool that’s the difficulty that we’re facing,” says Mance’s sister Adrienne San Juan.
Roshlind has Aplastic Anemia which is essentially bone marrow failure and her body’s not producing enough blood cells and Paroxysmal nocturnal hemoglobinuria which is so rare it only affects one in a million people. Her body is producing stem cells but they’re producing abnormal cells which her body is destroying.
“Just to maintain her health we go to the hospital twice a week for transfusions and platelet transfusions,” says Adrienne. “She can’t have those for the rest of her life and she is already getting a negative allergic reaction to her platelets so a stem cell transplant is essentially what we aiming for.”
Adrienne and her family set up Match4Roshlind to find a donor.
Once Bille Nguyen has his transplant surgery, he will remain in hospital for a few more weeks to recover from the stem cell transplant as well as the side effects from the intense chemotherapy he has received.
“In Alberta we do between 110 and 120 transplants from donors per year and across Canada there are about a thousand,” says Daly. “It’s an uncommon procedure but it’s fairly common in patients with blood cancers.”
Susan Nguyen remains dedicated to helping other ethnic minority families in Canada facing this same waiting game and is encouraging everyone to go to One Match to take the swab test and get their names on the donor registry list.