Australian pins hopes on estranged Toronto family
TO SAVE HER LIFE, WOMAN SEEKS LONG-LOST COUSINS
“It’s a bit taboo in my culture to speak so openly about these loss-of-face situations.”
EMILY SUN WHO HAS NON-HODGKIN’S LYMPHOMA, ON THE RIFT IN HER FAMILY
In a book written by 5-year-old Luke, an evil monster attacks a dinosaur, making her very sick.
His story, drawn in crayons and called “Family Dinosaur,” has a happy ending. After a visit from a little dinosaur, the bigger dinosaur gets better.
But the story of Luke’s own mother, who’s in hospital fighting her third bout of non-Hodgkin’s lymphoma, may not have such a happy ending.
Emily Sun, a 36-year-old woman living just outside Perth, Australia, desperately needs to find a matching stem-cell donor.
“If I don’t get the donor cells, I’m going to die,” she wrote on her blog on Feb. 23. “I didn’t want to live forever until I had my son.”
Because matches are based on genetics, her best hope of finding a stem-cell donor could lie 18,000 kilometres away, here in Toronto, where she believes two of her estranged cousins live.
Sun, originally from Hong Kong, isn’t a match with any of her other family members. Some, like Luke, don’t fit into the age range to donate. Finding a match with a stranger has proved futile as well.
She knows her estranged cousins as Kenny Chan Lei Long, who would now be about 44, and You Zai, who would be 36. Their mother’s surname was Ly and their father’s name was Lee Si Hong. They may know Sun as “Oogwei,” a nickname her grandmother gave her that translates to turtle. She hasn’t seen the pair since 1984. They disappeared in the early 1990s after a family rift.
“It’s a bit taboo in my culture to speak so openly about these loss-of-face situations but I have no choice,” Sun wrote in an email.
She’s staying at the hospital fulltime now, until her latest round of chemotherapy ends in April.
Her immune system is weak so Luke can’t visit much, and Sun’s husband must see her from a distance while wearing a mask.
Chemotherapy kills a person’s “bad” cells and destroys their immune system. Donor stem cells take over the production of healthy cells.
“The transplant is really a way to restore their health to its hopefully full capacity,” said Olga Pazukha, spokeswoman for the OneMatch Stem Cell and Marrow Network, which helps match donors with people around the world who need the transplants.
Since patients are more likely to match a donor of similar ethnicity, Sun is in an especially hard bind. She is Asian and there aren’t enough Asian stem-cell donors to match demand, Pazukha said.
Since her diagnosis, Sun has become passionate about the issue. Even if she doesn’t find a match, she hopes people will register to donate so others like her can have a chance.
It’s possible Sun’s estranged cousins won’t be suitable donors. And she knows she may never find them, or shame may stop them from wanting to reconnect.
But Sun promised her little boy she would “leave no stone unturned.” “This is a time to put the past behind you and if for no other reason, just out of sheer compassion, just register. It’s quite painless,” said Rose Tavelli, Sun’s sister-in-law. In the meantime, Luke draws pictures to show how he’s feeling. Ta- velli said he harbours a lot of anger toward cancer. When he can visit his mom, he pretends he’s living in his story, where sick dinosaurs get better. “I am still here and I had a really good day because my family dino- saur came to visit,” Sun wrote on her blog on March 2.
“My son told me that I am the toughest dinosaur of them all, the carcharodontosaurus. He is a mapuraptor from a make-believe land where dinosaurs live forever.”