Life had been moving along swimmingly. Great family, amazing friends, an inner faith I could count on, and a healthy body that was still holding up on the softball diamond.
In the summer of 2014, I started noticing changes. At a cottage weekend, I noticed myself pausing after every log I split. When I couldn't even walk to the bus stop without heavy breaths, I knew something was amiss. I dropped into a walk-in clinic where blood work was done and a day later I received a call urging me to check into emergency. At Sunnybrook Health Science Centre further testing revealed my blood counts to be substantially lower than normal: haemoglobin of 46, white blood cell count of 1.7 with neutrophils of 0.3 and a platelet count of 31. I also had a fever of 39 degrees. A bone marrow biopsy was ordered immediately. The results? 15% blasts count …BAD NEWS! Blast cells are unhealthy, immature cells which don't develop into normal healthy cells. The level I had was consistent with myelodysplastic syndromes – high risk MDS. In MDS (previously known as pre-leukemia), the blood-forming stem cells slow down or stop making the three types of blood cells.
Patients with MDS will commonly develop anaemia (low numbers of red blood cells which provide oxygen for energy) and may need blood transfusions. Some also have low numbers of white blood cells (which fight infections) and platelets (which help blood clot when you bruise or get a cut). Unfortunately in my case, all three scenarios were present. The best chance for a cure was to have a stem cell transplant. Siblings provide the greatest probability of an HLA (human leukocyte antigen) matching donor but unfortunately, my sisters did not provide the match. The next best chance for a match would be with an unrelated Asian donor, as patients are more likely to find a donor from their own ethnic background. In the ensuing months waiting for a match, I remained as upbeat as I could.
This was made easier by my amazing team at Princess Margaret Hospital who was able to keep my blast count from climbing any higher through a plethora of drugs and chemo. After being diagnosed and during this difficult waiting period, I didn't ask "why me?" - not once! No pity parties. I did research on MDS on sites like llscanada.org which provided valuable insight that helped me visualize what was happening inside my body. With this knowledge and the power of positive thinking, I would hopefully be able to hold off any progressions of the disease. I told my blast cells to grow up! (Later I would tell me newly transplanted cells to enjoy their new home and stay awhile.) Learning about MDS was one part of the equation.
The other part was learning of the cure: a stem cell transplant. Stem cells are used to treat a wide variety of diseases and disorders including leukemia, lymphoma and myeloma. I gathered as much information on stem cell donation and the transplant process as I could. This lead me to OneMatch, Canada's stem cell & marrow network. Sadly, I found out that the ethnic ratio within Canada’s stem cell registry is staggeringly disproportionate. Canada's stem cell database is 75% Caucasian. Chinese Canadians make up only 6.4% of the registry. This means a mere 18.6% make up all other ethnicities (Blacks, South Asian, East Asians, Hispanics, Aboriginals, etc.) combined! Worldwide, Caucasians make up 80% of the registry. This severe and stunning under-representation of ethnic donors in the worldwide registry means Chinese patients only have a 20% chance of finding their unrelated matching donors, compared to 80% of Caucasian patients.
While waiting for a donor, I wanted to help bridge this gap within our diverse communities. With the help of OneMatch, I toured universities, corporate offices, community and sporting events to coordinate stem cell swab drives. Hundreds of Canadians every year require a donor for a stem cell transplant— I encourage everyone to go to onematch.ca to find out how to get swabbed and registered! In March 2015, seven months after my diagnosis, I received the most amazing news. A donor had been found! Hallelujah!
Next step was to get my blast counts under 10% to qualify for the transplant. In preparation, I received further chemo, numerous blood transfusions to keep my energy up, and platelet transfusions to ensure against bleeding. Another bone biopsy was done in June to determine the new blast count. I was praying for under 5%...it came back at 2%! I was deemed ready for the transplant! I underwent my third round of chemo and full body radiation to eradicate all the old cells 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 throughout my body, welcoming the incoming stem cells to their new home and celebrating the beautiful journey together. The transplant took about an hour and was similar to the numerous transfusions I had already experienced. I'm now past the 500 day post transplant mark and doing well. I've had a few speed bumps with infections but I've had no transfusions since the transplant. God willing my body continues to accept my brand spanking new immune system.
One of the most difficult things for me during recovery was staying busy. I decided to direct my energy toward stem cell registration and blood cancer awareness— I truly believe that by helping others, I'm helping myself. The Leukemia & Lymphoma Society of Canada presents many such opportunities to give back. I went on the Light The Night walk this year with a fellow leukemia patient. It was so much fun but beyond that - it was inspiring. Count me in for years to come. I also signed up with LLSC to be a first Connections Peer Support volunteer. I'm looking forward to sharing my experience in this journey to bring hope to others affected by a blood cancer.
And last but not least, I just started an ongoing campaign to raise funds and awareness for LLSC: #TakeAHaikuCancer. Please join in. Tell cancer to "take a hike"! Channel your experiences, hopes, fears etc. on blood cancer into a haiku. Haiku is a non-rhyming poem consisting of 17 syllables divided into three lines of 5, 7, and 5 syllables respectively. For some this sounds like a daunting task. But don't be intimidated. If you don’t fancy yourself a wordsmith, it doesn’t matter — putting yourself out there makes your statement even more powerful. Once you have created your haiku, take a picture of your written haiku and post it to social media (Facebook, Twitter, Instagram, etc.) using the hashtag #TakeAHaikuCancer.
Details can be found on Facebook and Twitter. Name three friends when you post and challenge them to follow in your footsteps. With your help we will get this viral. For more information on how YOU can participate and/or donate, please go to the LLSC #TakeAHaikuCancer event page here.
This fight definitely has made me a better person. Yes, I have had lapses of negativity and despair — but only momentarily. Through faith, family, friends and organizations like LLSC, I was able to stay the course. Whether it was a yoga friend channelling planking energy my way; a softball teammate offering encouragement or (and especially) my wife Connie taking on the roles of friend, administrator, psychologist, fitness trainer etc., the tremendous support network I have been blessed with has kept me strong and patient.