July 26, 1962
One reason: DNA.
The best donors tend to come from the same ethnic gene pool as the patient. It’s actually the only situation in the world where race legitimately matters.
In the summer of 2014, I noticed frequent bouts of fatigue for no reason. When I couldn’t even muster a short walk to the bus stop, I knew something was amiss and immediately had some blood work done. A few days later was urged to head to Sunnybrook Hospital’s emergency.
After numerous follow-up tests and a bone marrow biopsy, I received the BAD NEWS. The results showed a 10-15% blasts count! Blast cells are unhealthy, immature cells. My level was consistent with myelodysplastic syndromes – a pre-cursor to leukemia. In MDS, the blood-forming stem cells slow down, or even stop, making new viable blood cells. I would need ongoing blood and platelet transfusions.
My best chance for a cure was to have a stem cell transplant through a sibling match donor. Hundreds of Canadians require stem cell transplants every year, and more than 70% of them will rely on someone they don’t know to help save their lives. Unfortunately, my sisters did not provide the match. The next best chance of a match for me would be with an unrelated donor most likely from within my own ethnicity. Sadly, the ethnic ratio within Canada’s stem cell registry is disproportionate. Canada’s stem cell database of 350,000 is comprised of 75% Caucasian. Chinese Canadians make up only 7% of the registry. That means a shocking 18% make up all other ethnic backgrounds put together! I was put on the stem cell registration waiting list and the search was on.
As a match was sought, I was put on a transient chemotherapy regimen to prevent my condition from progressing to AML. I was receiving one or two blood or platelet transfusions… per month! Through faith, family and friends, I was able to stay positive and patient.
I prayed for a match but I’ve never asked “why me”. Instead, by God’s grace, we made this battle about increasing stem cell awareness. I became involved with OneMatch to raise awareness in getting more registrants from diverse backgrounds swabbed. We conducted stem cell and blood drives at work, sporting events and community gatherings; gave talks at universities and interviews with the media. I also took to Facebook and then produced a PSA, which you can see on my tomstrongwong page.
In March of 2015, I received the most amazing news. My team of doctors informed me an unrelated donor was found. Hallelujah! I underwent my second chemo to get my blast counts down to under 10% and qualify me for the transplant. Another bone biopsy was done in June 2015 to determine the new blast count. I was praying for under 5%…it came back at 2%! I was deemed ready for the transplant!
The donor was then notified and was given a drug over 5 days bolster his/her stem cell production. To collect the stem cells, blood was drawn from one arm and passed through a device to remove the blood-forming stem cells. The rest of the blood was returned through a vein in the other arm. Relatively easy, pain-free and there was no real net loss in stem cells for the patient.
In the meantime, I underwent my third round of chemo and full body radiation. This was called consolidation therapy and it was to eradicate any cancer cells left in my body leading up to transplant day: August 26, 2015.
What a surreal day that was! I was surrounded by the love of my family and God. I visualized a plush red carpet flowing throughout my body, welcoming the incoming stem cells to their new home. The transplant took about an hour and was like the numerous transfusions I had already received. I was discharged a month later and immediately wrote a thank you letter to my still anonymous donor.
So, about this donor…in a strangely beautiful twist, my donor wasn’t Asian. She was German. We made immediate plans to meet when the period of anonymity passed. It was May 18, 2018 at train station in Berlin. I met the person who saved my life! I was anxious and grateful. I was humbled and euphoric. I was beholden and, I was blessed.
This person — unassuming, beautiful, courageous, kind and caring — was everything I envisioned a donor to be. I remember thinking that with all the nastiness going on in the world there are still people like Doreen – and, people like you who reaffirms the humanity of our race. We hit it off right away. Unspeakable joy is what we felt! She allowed me to continue loving my family and friends. Now, I get to carry her with me the rest of my life.
One of the issues I learned from my involvement with Canadian Blood Services is that a donor could be on the registry for decades before getting the call to save a life. This was the case with Doreen and Germany’s stem cell registry (DKMS). She donated when she was 20 and, 12 years had passed before she got the call of being my match. Thank God for her patience and commitment. Doreen could very well have said “Oh, I’m still on the registry? I’m too busy to donate anymore.” She didn’t. Some people in the registry change their minds – they don’t follow through when they get the call to save a life. It’s very important for registrants to understand that changing your mind isn’t really an option. The repercussions would be dreadful for patients. Doreen didn’t do this. Her pledge was unwavering. Her heart remained wide opened. And now, we’re “cellmates” forever.
As a survivor, I remain focused on raising awareness for stem cell registration. I have an ongoing campaign to raise funds for blood cancer research: #TakeAHaikuCancer. I want you – in three lines of 5, 7, and 5 syllables respectively – to tell cancer to “take a hike”! Channel your hopes and fears as a survivor, patient, friend or donor into a non-rhyming poem to support those still battling. Once you have created your haiku, take a selfie with your written haiku and post it to social media (Facebook, Twitter, Instagram, etc.) using the hashtag #TakeAHaikuCancer. Challenge others to do the same and help me make it go viral.
Thank you for your interest in my story. And bless you all for giving of yourself for others. It cannot be overemphasized how much you can help and I applaud you for all the hope, and life you are bringing to others.
Blood cancer survivor