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Tom Wong (painting) - Toronto

Tom Wong

Toronto ON
Canada

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I’m an LLSC First Connection Peer Support volunteer where I share my journey and perhaps bring some hope to others affected by a blood cancer. If nothing else, I’m there to listen.

Great family, amazing friends, an inner faith I could count on, and a healthy body that was still holding up on the softball diamond; life was going great. In the summer of 2014, I started noticing changes. At a cottage weekend, I noticed myself pausing after every log I split. I couldn't even walk to the bus stop without heavy breaths; I knew something was amiss. I dropped into a walk-in clinic for blood work, and the next day I received a call urging me to check into emergency. My blood counts were substantially lower than normal, and I had a fever of 39°C. The healthcare team ordered a bone marrow biopsy right away.

The results were bad. I had high counts of blast cells (unhealthy, immature cells); the level I had was consistent with myelodysplastic syndromes – high risk MDS. In MDS, blood-forming stem cells slow down or stop making the three types of blood cells- red and white blood cells and platelets. My counts of all three were low, so my body could not fight infection, transport oxygen properly, or heal from bruises or cuts.

The best chance for a cure was a stem cell transplant. Unfortunately, my sisters were not donor matches for me. My next best chance would be with an unrelated Asian donor; a match is more likely with someone from your ethnic background. Waiting for a match, I remained as upbeat as I could. After being diagnosed and during this difficult waiting period, I didn't ask "why me?" No pity parties. I researched MDS and found resources on sites like llscanada.org that helped me visualize what was happening inside my body. I was always having pep talks with myself and my body. I told my blast cells to “grow up, do something productive!” (Later, I would tell my freshly transplanted cells to “enjoy your new home, stay awhile.”)

Learning about MDS was one part of the equation. I also learned a lot about stem cell transplants. I was disheartened to learn that the ethnic ratio within Canada’s stem cell registry is staggeringly disproportionate. At the time, Canada's stem cell database was 75% white. Chinese Canadians make up only 6.4% of the registry. This means a mere 18.6% is made up of all other ethnicities combined! Worldwide, white people make up 80% of the registry. Chinese patients only have a 20% chance of finding their unrelated matching donors, compared to an 80% chance for white patients. I had to help bridge this gap within our diverse communities as I waited for a donor. 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, they found a donor! After more chemo, platelet infusions, blood transfusions, and testing, 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 an Oscar Night party with plush red carpets throughout my body, welcoming the incoming stem cells to their new home. The transplant took about an hour and was similar to the numerous transfusions I had already experienced. God willing, my body continues to accept my brand spanking new immune system.

Flash forward to May 18, 2018, in Berlin when the most amazing feelings overcame me. This was the day I met Doreen – my stem cell donor. We had been exchanging anonymous letters for a while but I finally got to meet her in person. How do you describe being given the opportunity to thank the person who saved your life? I was humbled and euphoric. I was beholden and, I was blessed.

We hit it off right away. I couldn’t speak German and her English was charmingly broken. It wasn’t just laughs we shared. Over dinner she read (and we translated) all the thank you cards I brought along from family and friends. That created an uptick on the emotional meter. She was not only the answer to my question mark, she was the hope to future possibilities. Most important, she allowed me to continue loving my family and friends.

I remember thinking that with all the turmoil and nastiness going on in the world there are still people like Doreen – someone who reaffirms the humanity of our race. Now, I get to carry her with me the rest of my life.

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 go to the Light The Night walk every year with a fellow leukemia patient I met on my journey. It was inspiring and invigorating to walk the blocks where our hospitals were and feel triumphant. Count me in for years to come. I’m an LLSC First Connection Peer Support volunteer where I share my journey and perhaps bring some hope to others affected by a blood cancer. If nothing else, I’m there to listen.

I started a campaign to raise funds and awareness for LLSC: #TakeAHaikuCancer. Please join in. What you do is 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. 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 Facebookand Twitter. Name three friends when you post and challenge them to follow in your footsteps. For more information on how YOU can participate and/or donate, please go to the LLSC #TakeAHaikuCancer event page.

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I’m an LLSC First Connection Peer Support volunteer where I share my journey and perhaps bring some hope to others affected by a blood cancer. If nothing else, I’m there to listen.