Saving Lives With Pride
Did you know? Gay, Bi, and Queer men are eligible to register as stem cell donors in Canada and donate to a patient in need, regardless of who they have sex with. This Pride, we're working with Gay, Bi, and Queer men across Canada to get the word out that their communities can save the lives of patients in need.
Meet Susan, whose life was saved by an unrelated stem cell donor. She went on to meet her donor, William, and his boyfriend, two years after the transplant. Read her story here:
"After 10 straight days of rigors and night sweats, I went to a walk-in emergency clinic. The doctor asked questions about my personal life, then said, 'There is nothing wrong with you. It's anxiety.' I danced away, feeling as light as a bag of cotton candy. I had ways to deal with stress, I told myself. The engine of my life continued to run smoothly, except that for five months and nine days I had profuse, mattress-soaking night sweats.
During that stretch I also had enlarged lymph nodes under my chin, as though a string of pearls had been embedded beneath my skin. I saw three specialists, and had an emergency CAT scan and a bone-marrow biopsy, all of which turned up nothing conclusive. I saw an oncologist who ordered a neck biopsy of the golf-ball sized lymph node under my jaw. [...] Oddly, the pathology report showed no cancer, no leukemia, no lymphoma. It did show complete and total cell death - necrosis - but no diagnosis."
"In August, at our beach house in Kennebunk, I got sick the way Ernest Hemingway says people go broke: gradually, then suddenly. My chills and fever occurred around the clock instead of only at night, and then in case I needed a final wake-up call, the right side of my face went numb. I couldn't feel my gums or my nose. I could no longer wish myself well, or pretend it was stress. My husband and I drove 470 kilometres from Maine to Montreal. [...] At the border we were the only car, and in triage at the Jewish General Hospital I was the only patient. I had the distinct impression I was travelling first class.
I spent the next five days undergoing every conceivable medical test, including bone-marrow biopsies, lumbar puncture, lung scans, MRIs of the body and brain, CAT scans, PET scans, and blood tests. [...] I had visions. My father, who passed away in 2006, appeared several times. Scrawled across his face was the message: Do not come. It's not your time. Stay and fight.
Through process of elimination, I was diagnosed with HLH, a rare autoimmune disease with a death rate of 70 per cent. Hemophagocytic lymphohistiocytosis. It's a good Scrabble word. It affects one in a million adults. Without treatment, the patient dies of multi-organ failure within 60 days of onset. Nobody knew where I was on that trajectory."
"Thankfully, I responded to the HLH protocol, and left the hospital on a sunny day in late October, ready to resume my book events. It was a euphoric time in my life. I enjoyed 77 days of wellness - but then the wheels fell off the tracks. HLH came back with a vengeance, and my organs were threatened. I would need a bone-marrow transplant if I had any hope of survival. Did I have any siblings? Yes, I answered, five. Good, the doctors said, siblings are the best possible match."
"One of my brothers had matched but for genetic reasons was eliminated from contention as a donor. That devastating cancellation required [my doctors] to [search] the International Donor Registry to try to find another stem cell match. That was a terrible time. The clock was ticking. The 60-day window [to get my transplant] was shrinking.
For all bone-marrow transplants, matching occurs through HLA (human leukocyte antigen) typing. HLA are proteins, or markers, found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The best possible outcome for transplant is when the patient and the donor have 12 identical isomers, a certain type of chemical compound. William Ashby-Hall, a 23-year-old gay British man, was a 12/12 perfect match. There is no payment to the donor; it is done altruistically, out of sheer compassion. I mention his sexual orientation only because the rules for gay donors are highly restrictive in Canada and the United States. The same day William's HLA typing was entered into the computer system, he was called and asked to save the life of an anonymous Canadian woman. He jumped."
"On the day of the stem cell retrieval, William sat in a recliner in a hospital in London, and over a period of eight hours his blood was drawn from one arm into a machine via a plastic tube. The stem cells from his blood were extracted via centrifuge and the blood, minus the stem cells, was returned to his other arm. It's a procedure called apheresis, and [it] replaces the old way of obtaining stem cells, which was done by inserting numerous large needles into the hip bones and withdrawing bone marrow. Apheresis is pain-free."
"People have asked me if the ordeal has changed me. I'm still me, of course, but near-death can be an amazing teacher. Every detail about what one desires comes sharply into focus. What has changed is my attempt to preserve the sanctity of all that I hold dear. I guard my human possessions. People have also cited my resilience. No. A thousand hands lifted me back to where I am now.
I began to write thank-you letters to my donor, despite the fact that no contact can happen for two years; the death rate is too high. The first letter simply said, "It's been 100 days, the first hurdle. I'm alive." The second letter said,"It's been one year, thank you for the miraculous gift of your stem cells." The third letter said, "I would love to look you in the eye and thank you for giving me a second chance at living my life."
William contacted me 27 months after my transplant. I met him in London on January 17, 2019, surrounded by my family. It was one of the truly transcendent moments of my life"
"The day I was to meet my donor William Ashby Hall, and his husband Michael Ashby Hall, I couldn't stop crying.
I thought of the patients I became friends with who had also undergone the stem cell transplant and unfortunately died.
I was carrying the Olympic torch, and the moment had a gravitas that was indescribable. My family had gathered from three cities: Montreal, New York, and Boston. On the morning of January 17th at the Grosvenor Hotel on Park Lane in London, my eyes were pink and puffy. I walked into the bar and asked the hostess if I could book a table for eight people at five p.m. My son and daughter were by my side. She asked if it was a family reunion. I said yes, but that it was probably unlike any family reunion she had ever heard of. I told her I was meeting the British man who had saved my life with his stem cells. We left the bar, and she immediately went to the general manager and they Googled my name. The first story that popped up was a radio interview with Carol Off of CBC's As It Happens. The headline ran: One in Twenty-five million. How an unlikely bone marrow match saved a Montrealer's life. When we took our seats around the long table, and champagne was uncorked, William and I were mashed together as though we had been hatched from a single eggshell. We were smitten. And then the lights flickered and the chef appeared with a blazing cake with a chocolate inscription that said,'You are one in twenty-five million.' Hospitality at its most extraordinary.
How do you ever properly thank a young donor for such an altruistic gesture? You can't. But over time, I have come to see that giving a life to someone else has an equal magnitude to being on the receiving end. To give is to receive. Buckingham Palace was just across the green, but royalty was disguised in the heart of one ordinary man from St. Alban's who signed the registry and saved a life."
Meet Joel, who shares his journey from diagnosis with blood cancer through to stem cell transplantation and recovery.
"I was a full-time registered nursing student and working full-time as a practical nurse. I swam and worked out regularly. But then I started missing classes and had to have my shifts covered at work. I was just tired... so tired. After my mom didn't hear from me for a few days, she came by my place and saw I hadn't gotten out of bed for three days. She told me 'there's something wrong'. I went to my doctor and he ordered some blood work. That evening, I got a message from my doctor telling me to call him right away. When I called he said 'You need to come in tomorrow, we found something in your blood'. I said 'is it HIV?' As a gay man, that was my first thought. He said 'No, it has to do with your bone marrow."
"Right away, the doctors started talking about needing a stem cell transplant, given that chemotherapy would probably not be enough. We discussed having my brother tested. A sibling match was considered the best option. Unfortunately, my brother wasn't a match, which was very disappointing for him because he wanted to be my hero and be able to help me. That's when I knew I needed an unrelated donor to save my life."
"When the doctor talked to my parents and I about the treatment and transplant process, he told us that finding an unrelated donor match would be difficult given my mixed heritage. I am Métis (Cree) on my mother's side and a mix European (French/English) on my father's side. The matching process for anyone is difficult and in my case caused a lot of stress and anxiety. I know now that for patients with certain ethnic backgrounds, it's more difficult to find a matching donor, mostly because there are not enough registered donors from those groups."
"In the first three months they found a possible match and I was excited! The sooner we found a matching donor, the sooner I could get back to my life and everything I had put on hold. I don't know what happened, but either the donor pulled out or it was not a perfect match. It was devastating to know that I had to wait longer before they could give me the gift of life. I was scared. Thankfully after 6 months of searching they found my current match!"
"Before my illness, I was the type of nurse who was there to complete a set of tasks, whether that be cleaning a wound or inserting a catheter. But after I became a patient, I realized how important it was to have compassion and empathy, it makes all the difference. I never realized how important a smile or kind words were until then. Yeah it really did change my nursing practice to revolve around compassion and empathy towards others, but also being kinder to myself. And just trying to be a better person, a better nurse."
"I'm not sure why there aren't more people of all ethnic backgrounds registering as stem cell donors. I think it's important for people to understand that in most cases, it's not difficult to give stem cells, it's pretty similar to donating blood. I think a greater encouragement and reach to ethnic communities is needed both for blood donation and stem cell donation. Because, you know, they could possibly save a life. The life of someone who is loved and cared about, someone who has a brother or sister, who is a family member and friend. Some people's lives depend on this."
"My name is Nikolai Junk, I am 40 years old and I live in Germany. In 2015 I registered as a stem cell donor when I was donating my blood. Since I donate blood regularly, I thought it would make sense to be a stem cell donor. So maybe someday I could personally save someone's life. Working as a firefighter, it is normal for us to save lives, but when I was told in 2018 that someone needed my stem cells I was very excited. I said yes without hesitation!"
"Before the donation, I had to take a stem cell-promoting drug for a few days so my body could create more stem cells. Then the big day came. My personal stem cell donation for my genetic twin! I layed on a couch for 5 hours while the valuable cells were removed from me. When I was done, I was told that my cells were given to a 38 year old Canadian and I didn't know much more at the time. I am so happy that I was able to personally give someone a second chance and I am very proud of it."
"I still think about my donor today. As recipients, we don't get to know much about the donor until it's been 2 years. I recently received a letter from my donor and turns out he is from Germany. Who knew that someone from the otherside of the world would be a match. A great match as well! We are planning on meeting at some point when he comes to Canada. At which point I plan on thanking him for his gift. I consider him my hero because he saved my life - hero stuff."
"COVID events and the precautions that we need to take to prevent further illness are important. But a lot of people don't realize that travel restrictions have prevented patients from receiving their stem cells from international donors and it could be quite difficult for them. This should encourage us to donate locally, if our Canadian registry is bigger, then people won't have to go through an international database and risk not receiving their stem cells due to the travel restrictions and situations like this might be avoided."
Listen to statements from Transplant Hematologists across Canada in support of gay, bi, and queer men as donors.
Listen to testimonials from the video/tiktok performers in this campaign, explaining why they think the campaign is needed and what it means to them.
What is stem cell donation?
Watch this whiteboard video to learn more about blood stem cell donation, how it helps patients in need, how the matching process works, and what donation looks like.
How are stem cells donated?
There are 2 ways in which stem cells can be donated:
- Blood - 90% of the time stem cells are obtained from a simple procedure that is similar to giving blood. A growth factor is used to increase stem cell count in blood, which is then collected in a procedure taking around 4-6 hours.
- Bone marrow - stem cell donation from bone marrow is necessary less than 10% of the time. The procedure is performed under anesthesia and donors who have undergone bone marrow donation report the feeling post-donation to be similar to falling on ice.
If matched with a patient, a physician will decide which method is best suited under the circumstances at hand. See the images below for details on how each procedure is performed.
Register to be a stem cell donor today at http://blood.ca.