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Michelle Hügli
Gloria Greyeyes forced her four-year-old daughter, Jasmine, to take a pill every day, and another one and a half pills twice a week. Three days a week Jasmine took liquid antibiotics.
In addition, every month Jasmine got a shot in the heart and took three pills twice a day for five days. Every three months, Jasmine went for a spinal tap and took six and a half pills every week to maintain that treatment. And every six months she had some of her bone marrow removed for examination.
"It’s scary and confusing," says Greyeyes but she kept Jasmine on this routine from the age of two. It broke her heart to do this, but she had to; Jasmine has leukemia and needed chemotherapy to stay alive.
Jasmine was diagnosed with acute lymphocytic leukemia in September 1999. When her treatment was due to end in November 2001, ironically, her mother was even more afraid. Greyeyes said, "I’m scared again, in a different way because all through the treatment I’ve had the chemotherapy kind of as a guard against this cancer. Now, the door’s open for the leukemia to return. She’s not going to have the chemo to keep it at bay." However, Jasmine is now off cancer medication and chemotherapy treatment, and she and her family are thrilled.
Greyeyes is not only fighting hard for Jasmine but for other Aboriginal children with the disease. The Aboriginal community is in need of blood donations and bone marrow donors. Greyeyes is targeting Aboriginal people because ethnicity is important in finding eligible bone marrow donors. Proteins called antigens match marrow, and some combinations of antigens are specific to populations sharing close genetic relationships, such as Aboriginal people. She has designed posters and flyers with Jasmine’s picture to create awareness of this need.
Although Jasmine doesn’t need a bone marrow transplant right now, Greyeyes knows there’s a possibility she could need one soon. And that’s what motivates her.
"The chances of finding a bone marrow for someone who’s Aboriginal are too slim. And it’s just a scary thought because I know for a fact that my girl is not the only one in this world that’s going to have cancer. I hope that if another child needs a bone marrow, an Aboriginal child, that I’ve done enough work that there’s a match on the marrow for her or him," said Greyeyes.
Of the 215,000 registered donors on the Canadian Blood Services’ Unrelated Bone Marrow Donor Registry, only 1771 are Aboriginal. That’s less than one percent. Right now, there’s a 1 in 750,000 chance to find a match in an unrelated bone marrow registry.
In 1998 Lance Relland, a Métis teenager, established the Aboriginal Bone Marrow Registries Association (ABMRA) after he was successful in finding a matching bone marrow donor. He realized that other Aboriginal children might not be as lucky. The ABMRA is dedicated to helping Aboriginal people find eligible donors in a culturally sensitive manner.
The ABMRA allows for directed donations where people can choose to whom they will donate. Canadian Blood Services provides only universal donations. They won’t allow people to request they give only to Aboriginal people. Mary Lindsay, Director of the Donor Division at ABMRA, says it’s a culturally sensitive issue because some Aboriginal people believe that when a person shares their blood, they become related to that person.
"Some people are really touchy about that, they don’t want their blood to go to strangers and they feel that other native people are not strangers to them and that’s something that’s a cultural issue that you have to be sensitive to."
Lindsay says that she would rather have people donate to a small group than not at all. The ABMRA goes out to First Nations reserves and rural communities to recruit potential donors. They do an in-cheek swab to collect DNA rather than draw blood, so the method is less intimidating to people who are interested in becoming a potential donor.
Greyeyes works closely with the AMBRA to promote awareness of the importance of Aboriginal bone marrow donors. She says they have been very supportive and believes they are doing extremely important work. She sees her daughter’s pain and looks for something good in the life of a cancer patient.
"I honestly believe that everything happens for a reason, even bad things and this is definitely bad, and I got to believe and got to find out that there’s something positive there and I believe that the Aboriginal Bone Marrow Registry is that positive thing."
With support from the ABMRA, Canadian Blood Services, the Muskeg Lake Tribal Council and the Federation of Saskatchewan Indian Nations (FSIN), Greyeyes is spreading as much information on leukemia, blood donations and bone marrow transplants as possible. She plans to deliver posters, flyers and leaflets to all First Nations reserves and communities in Canada, including through Friendship Centres in major cities.
Greyeyes has approached the FSIN for permission to use their mailroom to send out the information, because she can’t afford the cost of the postage on her own. She always carries leaflets of information with her to hand out to people she meets and to leave in band offices and other places she visits. She feels a sense of urgency in getting the information out.
"It’s a panic situation," Greyeyes says. "People need bone marrow transplants right now."
Greyeyes has no doubt that once people learn about her daughter’s story and the need for more registered Aboriginal bone marrow donors, they will come forward to help.
"I know Indian people are givers and they’re keepers. What I mean by that is they look after each other’s kids. If you see some little Indian kid in distress, you go to their aid right away and check it out, try to help them out. This is the same thing, only it’s bone marrow."
Michelle Hügli is a Journalism student at the University of Regina. She is a Cree-Saulteaux from the Yellow-Quill First Nation in Saskatchewan.