Shannon Millar-Hopkins and Steve Hopkins
As told to Tania Wybenga, Sr. Manager Community & Fund Development
What is your connection to the LLSC and blood cancers?
Shannon: I worked at Salesforce for seven years and it is a very philanthropic company. I attended an International Sales Meeting and got to hear about Light The Night through an executive that had a recent diagnosis with Lymphoma. We took it back to the regional office in Toronto and started our own Light The Night Campaign. At the time we didn’t have any one directly impacted but there were several colleagues who were indirectly impacted – parents, brothers, sisters, friends who had been diagnosed with blood cancer – they became the focus of the campaign.
I still found Light The Night to be really moving at that time even without a direct connection. Walking by SickKids was especially impactful.
Steve and I have been married about one year and together for about two years. Before meeting him, as a 35 year-old female, I had been going about fertility preservation research. It didn’t work out, and I had some not great experiences at some of the clinics.
Steve came along and we looked at exploring fertility options further. I had done all the blood work June 2018 and again in December 2018. In March 2019, we decided to try IVF because we had not yet conceived naturally. Steve had to do more blood work and my doctor also did my blood work again June 2019, even though it wasn’t required. From there abnormalities were spotted and I was admitted to PMH and started treatment for APL. Once we got the genetic testing back later in June, my diagnosis came back as AML on June 24th. At that time I decided to wait for treatment in order to explore fertility preservation, and I was discharged. That Thursday we looked into getting a marriage license at City Hall and then about week later we married on our rooftop terrace by Steve’s dad, who is a minister. We were surrounded by about 40 family and friends.
Up until my diagnosis I wasn’t displaying any symptoms – not tired, no bruising. It was a shock. The way everything happened (fertility treatments, blood tests) was somewhat serendipitous in that it fell in line with when my body started going hay wire.
We struggled with the wrench in our plans of starting a family. You don’t have the time to have conversations about options because treatment starts so quick. We had to push for a lot of that on our own. I was able to pause treatment for a month so we could explore options for preservation. We were ultimately unsuccessful but we can rest easy knowing we tried.
More resources needed around fertility options and people need to be given the support to make these decisions. Ultimately, you’re dealing with two major issues at the same time. You’re also processing two losses.
Steve: I understand from clinician’s point of view that survival is the main goal. It almost seemed black and white for them in terms of how it was addressed. The human element seemed to be lacking.
What has been the biggest impact on your lives with your blood cancer diagnosis?
Shannon: I had a fast-paced, high demand job that I loved (manager of start-up in Toronto) – I had to drop everything at the drop of a hat. I’m used to feeling productive and busy, to being able to control things. In sales inputs = outputs and this isn’t the case with cancer. You have no control. There’s lots of “wait and see” and not always a lot of definitive answers. No one follows the same path to recovery. Being able to relinquish control has been challenging, but it is also really great because it was something I needed to work on.
Being immune compromised and all the things you need to do day to day to protect yourself has been another big change. Not being able to do all those things I love like going to restaurants, concerts, travel, has been tough.
The relationships that you build with people – you get to know them, see their faces, they become friends and along the way you might lose some friends. We lost someone we were really close with. You layer that onto your own situation and it is very scary – what does that mean for me?
Steve: As the person who watches the person go through it, it’s devastating. The impact she has on people…the first night I met her I told the Uber driver I just had a date with the woman I’m going to marry. You have all these dreams you’re going to do together and now this person I couldn’t envision my life without might not be there.
I have a very hard time not being able to do anything. You try to look at anything, something you can do to help. For Shannon it probably feels like a blur but for me there is no blur. I remember every painful second. Sometimes watching to make sure she’s still breathing. The amount of doctors I ran down in the hall to get some reassurance…you want to do something for the person but there’s nothing you can do and that’s a devastating feeling.
The strength and courage and grace she displayed is incredible. The majority of the time in hospital she was smiling. There was never anything other than I’m going to beat this, I’m going to be fine. To know that this exists, you want the world to see those traits she displayed – I’m going to fight and also be grateful for every moment. We’ve been together, isolating for about 11 months now and I wouldn’t trade any moment of it.
What does Light The Night mean to you?
Shannon: It is a lot about hope. I can’t think about the event without getting teary eyed. The colours of the lanterns…the survivor lanterns are very inspiring. We’re lucky that many blood cancers are very treatable and it is inspiring to see so many white lanterns. I have a deep appreciation for the research and the milestones and improvements of treatments and quality of life.
It brings emotion to a disease that not many other events do. You bring a human, personal level to it.
Steve: The first time she mentioned the walk it made me think of our first Christmas. I had a mug made for her with a lighthouse on it – she’s a light in a dark world. It (LTN) was almost an extension of that. We get caught in negativity and lack of hope, this is the complete opposite of that. There is so much hope and positivity in one concentrated area. It isn’t just people impacted by cancer that need this, it is something EVERYONE needs, that inspiration.
The day of diagnosis is challenging but people have turned it into a positive to impact others. They are superheroes.
Who inspires you?
Shannon: You meet so many people who are diagnosed. Steve and the wife of another patient we got close to – the two of them were machines. Complete rocks. There every day in the hospital. Sitting there non-stop.
I became friends with some other people my age and watching them handle their situations inspiring.
Dr. Loach at PMH was a beacon of hope – he exudes confidence, he made us feel reassured every day. They (the medical team) care – the nurses are amazing.
Steve: Shannon inspires me – my Instagram profile says, “I’m married to a real life super hero.”
It is also how people around you step up. They don’t want anything in return – they call, they do drop-offs – they just want to help. I’ve had strangers in the last 3 weeks who have donated thing to us to make our lives easier and for no other reason than to help. It makes you feel like you’re not alone. It is hard to be in isolation – it is emotionally draining but you go back to all these people who create this net of support. When we start to fall they’re there to catch us.
Why should Canadians support the blood cancer community through Light The Night?
Shannon: I didn’t know until I was diagnosed how prevalent blood cancers really are. The numbers seem low but when you’re diagnosed so many people come out of the woodwork and say my parent, brother, sister had blood cancer. We’re making such great strides so far with research which is promising and someday there could be a cure.
Steve: Similar to what Shannon said, a good friend of mine in the late 80s his brother was diagnosed with leukemia and unfortunately he didn’t make it. Today his chances of survival would have been so much greater. We saw the increased blood cancer survival rates from Canadian Cancer Society report on CP24 while we were at PMH. That’s because of the research you guys fund. It is a very expensive process for treatment. We’re so lucky to live in a country where treatment is available. The more research we do the more cost-effective treatment becomes.
One of the happiest moments I will have from this process happened at LTN. I was standing about 10 feet away from Shannon and we had a huge group that came to support and amongst all those lanterns there was Shannon holding a white lantern. It was one of the happiest moments of my life because she’s a survivor. The other white lanterns gave me hope. Even to see those who lost someone, the hope and gratitude they wanted to display to others was amazing.