Interview with Tom Wong
Tom Wong missed two years of work after he was diagnosed with Myelodysplastic syndrome (MDS), a rare form of blood cancer. Since recovering, his goal has been to increase the number of people listed on the Canadian Blood Services Stem Cell Registry.
Watch: https://youtu.be/m27qyBoIHgE
Unedited transcript.
Jim Allan: The year was 2014 and my guest today, Tom Wong, felt tired doing some routine tasks like walking and chopping wood. I'm not sure if that's a routine task or not. He went to the doctor and, welcome Tom, tell me what happened next.
Tom Wong: Went to the doctor. Even before that, the walk to the bus stop had me hands on my knees before I could get there, catching a breath. I knew this is not right. So I went into one of those walk-in clinics and for some reason they decided to give me a blood work. Usually I wouldn't expect that but they did that and sent me home. I guess two days later at around 2 a.m. or something some of the blood works came back to that office or to whoever the doctor was and said get yourself into a hospital and get checked out.
Jim Allan: So the blood work revealed what?
Tom Wong: It revealed the stem cells make blood products and so they evaluated or they looked into all these the hemoglobin, the white cells, and then Nietzsche fills.
Jim Allan: So a basic test.
Tom Wong: Yeah and they were all not at the level they should have been at. So it indicated that something was amiss.
Jim Allan: Right.
Tom Wong: And so in blood cancers what they look at is something called blast counts. Okay. And a blast count is the stem cells that have not matured to hemoglobin, platelets, neutrophils, red, whites, whatever, functioning blood products. So there's still in your bone marrow taking up space doing not what they're supposed to be doing. It's like if you have a kid and he's finished school and he's living in your basement not getting a job or not continuing his education. It's kind of like not doing anything. So I had a lot of these kids in my basement aka my blood marrow.
Jim Allan: Right.
Tom Wong: A diagnosis came fairly quickly though and what were you diagnosed with? It was called myelodysplastic syndromes. It's the short acronym for it is MDS.
Jim Allan: Okay.
Tom Wong: And before they gave it a name it was actually known as pre-leukemia.
Jim Allan: So blood cancer.
Tom Wong: Yeah blood cancer. And if it didn't get addressed it would progress to I think it would have been ALL, any number of the leukemias.
Jim Allan: So did panic, did panic set in? What was your, I guess what was your reaction?
Tom Wong: Well I'm a pretty upbeat guy but that threw me for a loss for sure. But I tried not to wallow in that why me kind of attitude. I wanted to research and see what was going on and well my wife is pretty awesome so she said yeah you're gonna beat this. My son same thing. You're gonna beat this. So there's nothing I could do but beat it. Without understanding it.
Jim Allan: I'm gonna interject a personal anecdote here.
Tom Wong: Yeah.
Jim Allan: It's like and I don't tell too many people this and why not come out today? I'm coming out. Nice. But I had I had my friends will know this but I had bladder cancer in 2004-2005. So I've gone through a similar experience than you have.
Tom Wong: Fellow survivor.
Jim Allan: Fellow survivor. I had we can get into some of the the goreier details later but you I know you had a whole regiment of stuff. I had chemo and I also had surgery. So there's different ways of pursuing this. However my first question to my doctor when he was giving me the bad news was like will I ever be able to play the the violin? And he said that depends if you ever could play the violin which was smart of him because of course I couldn't play the violin. So I found black humor was the way I kind of got through the whole thing. Not to say I wasn't upset from time to time because I actually was at least once.
Tom Wong: Yeah.
Jim Allan: But a lot of it I put invested a lot of energy in just keeping other people upbeat. Yeah. It took a lot of energy just to keep everyone else from freaking out.
Tom Wong: I'm like you Jim. I looked at it with humor. Black humor as you put it.
Jim Allan: Yeah.
Tom Wong: But like if I found myself wallowing I would literally go upstairs to my bedroom and shake it trying like like a dog shaking off that that moisture.
Jim Allan: Because you have no choice.
Tom Wong: Yeah.
Jim Allan: Right.
Tom Wong: You have to yeah you know it's the class half full or half empty. You do have a choice sometimes how to how to handle it.
Jim Allan: So so I've done some reading about your your story because you've done some publicity. The best chance for a cure was stem cell transplant. So what is a stem cell transplant?
Tom Wong: So stem cell transplant is where they remove my bad stem cells and replace it with healthy stem cells. The likelihood of finding a match was going to be the greatest for my siblings. But they both got tested. Both my sisters got tested and they weren't a match. So they had a chance of one in four of being a match and it didn't come through. They were disappointed. I was disappointed. So the next step was to go on the stem cell registry to see if anybody would match there.
Jim Allan: What does getting a match mean?
Tom Wong: So they they what they do is they look at an HLA. It's a it's a human leukocyte antigen and it and they're like markers. So I thought it would come from my family as well but that's not the case. I don't really know how to explain human leukocytes but it's not DNA and it's not blood type. So they went through the Canadian stem cell database through and there was no match and then they had to reach it worldwide. So throughout that process I continue with my my chemo.
Jim Allan: So you ultimately had what three rounds of chemo?
Tom Wong: Yeah.
Jim Allan: And then you had radiation.
Tom Wong: Yeah.
Jim Allan: So you're going through it. You're going through the middle.
Tom Wong: Right.
Jim Allan: So how did you feel during that? Did that knock you on your butt?
Tom Wong: I was pretty white for sure. But like in my head I was saying like you got to stay strong on this. And I was there. There were some very good victories. Things like when a buddy of mine arranged for a hockey session at the old Maple Leaf Gardens. I was able to play in that while I was going through chemo and that was like a funny story with that was I was getting regular blood transfusions throughout my waiting period because my those blood products were low. You have to replenish it somehow. So I got blood transfusions of plasma and platelets and red cells whatever I needed. The day before that hockey game I got a blood transfusion and they kind of blamed me for blood doping during the game. So that's pretty funny.
Jim Allan: You did get a match but it took I don't know eight months or something which seems like a good thing. But if it's done on computer why wouldn't that match happen like immediately?
Tom Wong: It's like I don't because they're just searching in Canada only. Yeah.
Jim Allan: So they do a wider search.
Tom Wong: That's right.
Jim Allan: Or was your ultimate donor the person that you ultimately matched with were they on that registry the whole time or had they just signed up?
Tom Wong: No.
Jim Allan: So that's so I see parts of your story and I and because I did in another interview with a fellow who was looking for a friend of mine who was and I encourage everyone watching to watch the interview. It's like you got a heart transplant but part of it was you know they were just searching in Canada and maybe the but and then I think there was some frustration because why didn't you just look wider? Why was in a wider net?
Tom Wong: Yeah it's a good question. So what you know if it's and also it's all done on computer so and if she was always there and so there's no you don't have any explanation for that really. I can think of it. It takes eight or nine say seven or eight
Jim Allan: So it's she's on the registry but they didn't find it until they cast a wider net.
Tom Wong: That's right and it wasn't even in Canada and I thought okay it's not gonna mean Canada but look at the don't they have a stem cell program in China surely someone in China could match because besides other than the familial matching with with my family it was gonna come from an ethnic that was the same.
Jim Allan: Historically it's ethnic.
Tom Wong: Yeah and it didn't come from China either. Our stem cell database in Canada is 70% Caucasian so to find a match if you're a white person that your chances are great. Within the Chinese community it's only 7% in the database and all all Asians including South Asians etc. make up only 15% but even looking at that us minorities are could have been in rougher shape the black community is at 1% the indigenous communities at 1% and if you're mixed race it's even harder to find a match so yeah even though I'm Chinese it's uh the Chinese population is the second dominant group in our stem cell database.
Jim Allan: So you've become a bit of an activist for this whole issue and this you want people to get on the registry.
Tom Wong: Yeah for sure.
Jim Allan: And this you know this is sort of an interesting part of the story as well you know and as a white guy over here it's like it's a dangerous territory but and that that part of the story really jumps out why would certain ethnic communities not be be less inclined to be on the registry is there
Tom Wong: Yep but I have a pat answer for that. There is an answer because I've within my own community like I know a fellow who's who's sister is a doctor and their family knowing the science still will not do it and that kind of shocked me. Part of the reason is because the the chi and and they don't want blood products coming out of their body thinking that it'll you lower the chi that kind of thinking so part of my my efforts has been to dispel some of those myths. But but to get on the registry they they it's a swab of your mouth right yeah it's so it's not some part of it this is just education so there's no needles involved no people are not taking blood exactly exactly
Jim Allan: That's a big part of what you're trying to the message that you're trying to get across it's not a big deal
Tom Wong: No right just to be part of the registry is is a huge first step but the second part of being part of the registry is if you are ever called to be and you're a match for someone right to make sure you follow up and be that donor there there are cases where if you have if you registered you might have registered because your friend was going through something and you wanted to do something for your friend but you got to know that being registered is not just for one person it's for anybody that can use you and hopefully you still say yes to a stranger because they'd be in that position as a patient and be told the news that they found a match and then to come back and and find out oh that donor decided to back out for whatever reason that's pretty disheartening
Jim Allan: Well let's get back to the story So you needed a match and you got a match?
Tom Wong: Yep.
Jim Allan: So you matched with a woman in Germany?
Tom Wong: Yeah.
Jim Allan: So not your ethnic background?
Tom Wong: No, total shock.
Jim Allan: And then so she matches and so what's required of her at that time?
Tom Wong: Yeah well the part A there were a few surprises in my match not not in ethnicity and not male and typically a male is a stronger match because apparently they they produce longer sustaining stem cells so they want that and in my case it was a white woman not even in Canada so what went into her regimen was they gave her drugs to boost her stem cell production so she's making more than she needs which is great because when they take it out of her she's gonna be on that net loss of zero right there only so when they when she's built up enough for me she gets she goes through a process like a transfusion where they take blood out of her arm centrifuge all these stem cells out of it and
Jim Allan: Does she just stay in Germany for this
Tom Wong: Yeah
Jim Allan: You didn't need to go to Germany she didn't need to come to Canada
Tom Wong: Yeah okay it's amazing and so they centrifuge it and then is left over that is non stem cell goes in her other arm so she's exactly at zero loss right and how long would it take for her to do that she was on her drug regimen for probably about a month or two so they're storing her yeah she's building it up first in her system she's making more and then they take it out of her and
Jim Allan: How much do they take out then like a body like enough to fill your
Tom Wong: Yeah well no not enough to fill me enough to get in to get my body used to it and not dominate my body because first they have to see if what they gave me actually takes hold right they can't like if they took out a hundred percent of my stem cell they're not gonna replace it with a hundred percent so my my blood counts were at zero for a while and they they monitored me hourly to see if what she gave me was building and building and recreating during the procedure yeah and it was so so they transported something like a blood product from Germany it arrives in and into me the same way as I received my blood transfusions although much much slower my blood transfusions if for like a red plot red blood cells or platelets or whatever in the past would have lasted maybe an hour so this is a special blood transfusion yeah this they want to give you in slow amounts
Jim Allan: So they're monitoring you to make sure what happened what what's the worst case scenario they could reject your body could reject
Tom Wong: yeah check that or yeah so you know but it's a match so they know that yeah it's working mm-hmm the toughest bit that I went through through in the whole process was I had a a case of severe sepsis and they gave me something to overcome it yeah so that's the thing there's during these things there's always there's a there's can be a huge risk of infections or roadblocks yeah obstacles yeah so yeah the big the big milestones were two weeks after the transplant sixty days after the transplant then a six month period and a year period and each time they expect your levels to be better and better and better and and that's what happened that's what happened thank you just thank God no
Jim Allan: You eventually met her
Tom Wong: Yeah but years years later
Jim Allan: You started corresponding with her so it's anonymous at first is it or how's that work then
Tom Wong: So, yeah I when they found a match I immediately wanted to write this person a letter and I know who it was where she was where he was who it was et cetera but I wrote it thinking I could sneak some of like my email whatever through it but not everything was redacted it was like an FBI file and letters that she came that came back to me as well I couldn't identify he she or whatever German these letters do you speak German no no no she had some really good broken English for sure
Jim Allan: But you met her three years later so yeah so what was that like where'd you go you going to 2018 yeah you're feeling great by this point
Tom Wong: yep cured more or less yeah in 2018 I had a business trip in Luxembourg in February I think it was yet no February for sure and I extended my business trip and took a train to Berlin and we met and it was amazing yeah it was because I brought things like thank-you cards for my family and my friends to give to her and we spent dinner reading it over pulled out the telephone the cell phone to get the the translator going and we got we had great conversations with our translator apps so actually
Jim Allan: just a backtrack about you mentioned work where you were working at RBC at that point so how did how did you miss work and
Tom Wong: I took two years off from the time that I was diagnosed so the three rounds of chemo and the radiation took you out for two years yeah well they they and RBC was really generous about it they don't want you coming back with stress of work they want you to completely heal so that I really appreciated that
Jim Allanvery once in a while there's you make a religious reference were you religious before this or you did religion I did your bill did your faith get you through some of this
Tom Wong: yeah no I I grew up in Quebec City which was mainly so I went to a Protestant school although didn't didn't really have much motivation for a religion the one thing I recall from religion studies as a kid was doing crossword puzzles and one question was five letters starting with J you know that kind of stuff and but yeah I definitely I read the Bible on my own as a as a high schooler I didn't go to any formal church or anything like that but I've always had a spiritual grounding and I think it surfaced a lot more during this period and yeah I am near God's very important to me right now and probably hopefully the rest of my days and just so thankful with my journey and being a better person from it and there there was a reason why I caught this and there's a reason why I'm beating it yeah I'm here to spread not just being a good loving person but hopes hopefully being an example for others to be that person themselves there's enough shit in the world that we don't need more of it
Jim Allan: Tom we we can't swear on this program I'm kidding I'm kidding you can swear all you want I'm a little shocked yeah shocked and frankly offended
Tom Wong: are you gonna toss your water at me?
Jim Allan: pulling your I'm pulling your leg since all of this happened you you you seem grateful obviously and then and you um you've been involved in spreading awareness some of which we've talked about already but why why the impulse to to give back
Tom Wong: well even before they found a match I was on the trail looking for a match anyways I I'm pretty proactive that way and in my research of of what my disease was all about and finding out the the disparity in the in the stem cell database I felt that I was the right person to get that message out because I'm going through it and it meant life and death to me
Jim Allan: so you were doing you're getting involved even before yeah what you call an operation or procedure what do you procedure procedure
Tom Wong: okay um yeah it was a with a group called other half and they represent the Chinese community in the stem cell so I I did a couple interviews for them with the media and then I got involved with Canadian blood services who looking for someone to go out to universities and I said call me so I've been to Guelph and U of T and western those kinds of places to to speak with their stem cell drive because individually those those universities they do great work as well they have their own stem cell drives and I was just the person there speaking about what I'm I was going through and the urgency of it and yeah my my mission going through this was to increase the stem cell database not just for the Chinese community because I spoken with the Jamaican community as well and um it needs that awareness for sure
Jim Allan: so I mean you said you've made speeches but you've also uh had swabbing events and things like that so tell me tell me about that
Tom Wong: yeah um so on the anniversary of my stem cell transplant which is August 26 um I've held a fundraiser so around the third week of August every year although with the covid we haven't had it for the last couple years we've had a celebration called Tom turns whatever age I am for toys so what what happens is we uh we booked this pretty cool club downtown and people are are invited to come celebrate and bring a toy fit for me as a well if I this coming year I'll be seven so you're bringing a toy and at the event we have a swab booth Canadian blood services there we have information booths with from the leukemia society from um Canadian blood services as well the toys go to sick kids and to princess Margaret
Jim Allan: so what's take a haiku cancer
Tom Wong: take a haiku cancer is is my poke at telling cancer to take a hike you write a haiku about your experience with with uh cancer I'm pretty sure we're not too far to I'm pretty sure we're not too many degrees of separation from knowing someone with cancer right so I wanted you to write about that whether you're a supporter whether you're you're battling it currently whether you've kicked its ass already um um tell me about your emotions in a in a haiku in a five seven five um syllable pentameter
Jim Allan: I think and this was on the Facebook
Tom Wong: and yeah it's Facebook Twitter everything yeah a bunch of our friends have have all contributed to and it's uh it's amazing I'm expecting one from you after this Jim
Jim Allan: I guess so I have to now and so so you write it you're putting me on the spot
Tom Wong: you take a picture of you holding your haiku right and then you challenge I challenge Fred Bill Margaret to write a haiku as well right and then they're supposed to do it and challenge three other people cool cool or what would what would you like to see happen at this point well I I love the fact that the the caucasian people continue to to be part of the database we just need everybody else to be to follow their lead and and in this climate where there's more and more diversity in relationships there's a lot more mixed marriages we're gonna need a lot of more people who are multi-ethnic to to be part of the database right yeah it's not it's not just purely a Chinese person or purely a white guy or whatever there's a lot of mixed races going on so we need that community to like be part of it is there or who do they contact the website is on the Canadian Blood Service website which is blood.ca and it's it would be slash stem cells and in this period of COVID the number of the rate has dropped significantly of people doing this registering their stem cells but
Jim Allan: I think the number I saw was about 70 drop in the number of people so you've lost some momentum
Tom Wong: yeah yeah so please go to blood.ca and find out how you can do a stem cell all you're going to be doing is answering a couple questions they're going to send you a kit and when you get the kit in the mail you'll get so you don't even need to go anywhere no you'll get force to you now you get four long q-tips and you swab this corner this corner this corner this corner of your mouth and you put it back into that package send it off that's it it's easy so
Jim Allan: Hey, Tom, thanks for thanks for making the trip out here today it's awesome you got stuck in the traffic so so thanks a lot
Tom Wong: You're welcome and um thank you for having me it's been thank you for letting me um spread that awareness
Jim Allan: My pleasure