An interview with Joel Koette
Joel Koette, a Métis from Kelowna, BC was diagnosed with Acute Myeloid Leukemia in April of 2018. I was lucky enough to ask Koette, now a registered nurse and leukemia survivor, a couple questions about his journey.
What crossed your mind at the moment of the diagnosis?
Joel: “I cried and headed straight to my family's home where my mom, dad, brother and his wife were waiting for me. I cried. Howling in agony while we all stood in a circle hugging each other. I just kept thinking I wasn't ready to die.”
Before being diagnosed, were you aware of ethnic inequalities in the healthcare system in Canada?
Joel: “I was aware of the inequalities in the Canadian healthcare system as I come from a First Nations background. I have also worked in numerous roles supporting the community from being elected the National Aboriginal Chairperson with the Canadian Federation of Students to working with the Vancouver Aboriginal Center Societies Fetal Alcohol Syndrome program. I had very little experience or understanding of stem cells.”
Koette is Métis and had a hard time finding a match. Even though the Métis people represent 1.5% of Canada's population, only 0.4% of registered stem cell donors in Canada are Métis. Furthermore, 70% of all registered stem cell donors are white, even though roughly 88% of the world’s population is not. A stem cell transplant replaces a patient's bone marrow with healthy cells from a compatible donor. Compatibility between the donor and the patient is crucial in order to reduce the body’s rejection of another person's stem cells. This process is far more complex than blood donation. For a stem cell transplant to work, the donor and the patient must have similar genetic markers (HLA typing) to maximize the likelihood of success. Swab the World’s mission is to help marginalized patients, like Koette, by diversifying our stem cell registries and helping patients of color find life-saving stem cell donors. Diversity is critical, especially when it comes to saving lives.
What was your treatment like? How long did it take until you found a match?
Joel: "The treatment was a scary process. The first round of chemotherapy, called Induction (to put me into remission), was unsuccessful. I was told that I needed Salvage Chemotherapy, which was a last attempt to put the leukemia into remission. Of course, this was a difficult time to remain positive. I just kept thinking I wasn't ready to die. The Salvage round was successful. Had it not been, I would have been supported medically to be made comfortable, and it would only be a matter of time before I passed away. After being put into remission, I had an additional 4 rounds of maintenance chemotherapy as they looked for a stem cell donor. I was tired during the process and experienced a great deal of bone pain. It would usually begin in my knees and continue into my upper and lower legs and hips. These are the biggest bones in the body, and the process of chemotherapy is to eradicate my bone marrow and the immune system, which is located deep inside the bone. Not many peoples understand that our blood is created in the marrow. Luckily I didn't experience much nausea. I know that must have been a struggle for others, though, as I could hear patients on the Bone Marrow Transplant ward getting very ill. It took about 6 months to locate a match, and I received my stem cell transplant on September 4th, 2018."
What would you tell to a person who is thinking about signing up to become a stem cell donor?
Joel: "I would tell them that you could possibly save someone's life! A person who has friends and family who love them dearly. What a wonderful feeling it must be to know you helped someone in such a positive way!"
Did your donor remain anonymous? What would you say to your donor?
Joel: "My donor and I have been in contact and speak regularly. He is my hero. Without his donation, I would not be here today."The following year after Koette's transplant, he contacted his stem cell donor. I had the opportunity to read Koette's initial letter to his donor, a very emotional read!
Here is an excerpt from Koette’s letter to his donor.
Become a stem cell donor
A huge thank you to Joel for sharing his story with the Swab the World community. His positivity, perseverance and strength is an inspiration to us all. Joel's life was save by someone like YOU. If you want to become a stem cell donor, sign up here!