Mowachaht man's plea: Join the Bone Marrow Registry

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It has been just over four months since Patrick James learned that he has leukemia (cancer of the blood), a disease that took the life of his brother 13 years ago. James' only hope for survival is to receive a bone marrow transplant before he becomes too ill.

The procedure is relatively simple for the donor but there is a problem, a huge one; Patrick needs a compatible donor. Proteins called antigens that coat our white blood cells determine compatibility between the donor and the recipient. The odds of finding a compatible donor can be as high as one in 750,000.

Patrick may have difficulty finding his compatible donor. The reason: most of the potential donors on the registry are Caucasian. His best chance of finding a match is in the Aboriginal communities of both Canada and the United States. Unfortunately, no suitable matches were found in Patrick's immediate family.

The Unrelated Bone Marrow Registry in Canada is a computerized data bank that lists more than 200,000 potential donors in Canada. According to Peggy Warren of the Canadian Blood Services, it is estimated that fewer than 1 per cent of the registrants are of Aboriginal ancestry. That amounts to about 2,000 people.

In an effort to improve the chance for Patrick, friends and family throughout the Nuu-chah-nulth area on Vancouver Island have joining the registry. Since his diagnosis last November, Patrick has learned that more people, as they become aware of his illness, want to help. He decided that it was time to go public and raise awareness of the registry and the shortage of Aboriginal registrants.

Patrick comes from a huge family and has close relatives throughout the Nuu-chah-nulth territories. His father is Arnold James of Mowachaht. His mother, Veronica Dick, comes from the Titian family of Ahousaht. His stepfather, Tom Dick, also has a large family.

Patrick, 35, has a two-year-old daughter and is proudly helping to raise his young stepson. He works in the fisheries department for the Mowachaht First Nation.

Patrick described how he broke the frightening news to his family. He said he went to tell his sister first in order to gather the courage to tell his mother. He said that the whole family was in shock. This is the second time the family had to face this disease. Patrick's brother, Thomas, passed away at the age of 18. He suffered the same illness and was never able to find a compatible donor.

Peggy Warren says that, 13 years ago, there was no bone marrow registry. Odds for survival for patients suffering with blood-related diseases are much better now the registry exists and is growing steadily.

Patrick takes it one day at a time and sometimes has bad days. The doctor told him that he might have as many as two years to live or as little as a few weeks. Leukemia is unpredictable but Patrick is in the early stages and is still strong.

He said he is so glad to have his mom by his side. She's been there before and knows what he is going through.

Patrick asks that all healthy people consider joining the registry.

"If it doesn't help me, it could help someone else."

In fact, a Nuu-chah-nulth person joined the registry in hopes of helping Patrick; she received a call that she may be a match for someone else. Patrick is hoping for the best for both his friend and the potential recipient.

How do you join the Bone Marrow Registry?

You must attend an information session before signing up. The information sessions tell you everything that is involved in bone marrow transplants, pain levels and recovery time. You must be between the ages of 17 and 59. Unfortunately, people with heart problems, cancer, blood diseases and insulin-dependent diabetes cannot join the registry.

You may call Canadian Blood Services at 1-877-366-6717 for the dates and locations of information sessions in your area. You will be required to give a blood sample at a later date if you are accepted onto the gistry.

What to do if there are no information sessions in your area.

Be proactive. Contact your Community Health Representative or Public Health Clinic and tell them you are interested in joining the registry. Talk to other people, collect names and phone numbers of interested people that are committed to attending an information session. Volunteers will come to your community if there is enough interest. All they need is donated meeting space and the use of a television and VCR. The session lasts about one hour.

How is the bone marrow harvested?

While lying on your stomach under anaesthesia (you will be asleep), a specially designed needle is inserted into your pelvic bones at both sides of the lower back. Three to five per cent of your marrow is removed and is replaced by your body within a few weeks. You will probably feel stiff and sore in the hips/buttocks area for a few days. The pain has been described as about the same as when you fall on your rump on an ice rink. You will probably spend less than half a day in the hospital.

If, for any reason, you change your mind about donating your bone marrow, you may withdraw from the registry at any time.

Some information for this article was taken from the Unrelated Bone Marrow Donor Registry Pamphlet. Visit their website at www.bloodservices.ca or call 1-877-366-6716.

PATRICK UPDATE On April 12, Patrick received news from his doctor that a bone marrow match was found in Alberta. Patrick and his family are elated and relieved. Finding a compatible marrow donor greatly increases James' chances of surviving leukemia.

Patrick is now undergoing 10 months of drug treatment. He will be receiving daily shots of the drug, Interferon; a drug that he has learned to administer himself. If his condition improves he may never need the bone marrow transplant. If it worsens, he will require the transplant in order to survive.

While Patrick is thrilled that his match was found he remains concernedo those people in need of bone marrow that still haven't found their matches. He asks that people follow through with their commitments to join the registry in order to help others.