Couple's diagnoses of same blood cancer 'a ridiculously rare freak coincidence,' says doctor
For Luke and Lindsey Belding, it's just another obstacle in their way of being together
A Winnipeg couple overcame a long-distance relationship to finally unite in the same city, only to find themselves forced apart by an extremely unlikely coincidence — two cases of the same rare cancer.
"I've never seen anything like this. It's like a couple both getting hit by a car but on separate ends of the city on the same day. It's incredibly bad luck," said Dr. Kristjan Paulson, assistant professor in the Max Rady College of Medicine at University of Manitoba and chair of the leukemia disease site group at CancerCare Manitoba.
"I was going to say winning the lottery but this is not a lottery you want to win."
Luke and Lindsey Belding were both diagnosed with B-cell acute lymphoblastic leukemia, or ALL, a rare type of blood cancer that Paulson said just 20 Manitobans are diagnosed with every year. And in the majority of cases, the patients are children.
"To have two people that are connected, let alone married, with the same blood cancer is unheard of."
For the Beldings, it's just another obstacle in their way to being together.
Met, engaged, diagnosed
Both used to live on the East Coast, he in New Brunswick and she in Massachusetts. They met online and managed to spend some time together before Luke moved to Winnipeg in the fall of 2016 to complete his doctorate in fish biology.
Lindsey visited when she could, but couldn't move to join Luke until the summer of 2018, because she was finishing her studies to become a pharmacist. Meanwhile, they became engaged during Lindsey's visit for Christmas 2017.
Two weeks later, in January 2018, Luke was diagnosed with B-cell ALL. That summer he was given a stem-cell transplant and while Luke was still in recovery, the couple was married in a modest ceremony inside the sanctuary at the Health Sciences Centre.
Instead of going on a honeymoon, Lindsey became Luke's primary caregiver once he was allowed to go home. They planned for a larger, more formal event a year later but Luke relapsed in 2019 and was in and out of the hospital for treatments and blood transfusions.
As the search for another stem-cell match dragged on into 2020, it was further delayed by the arrival of COVID-19 and the shutdown of surgeries. A match was finally found in April but due to COVID-related visiting restrictions, the couple was forced to be apart again.
Then she got sick
They connected through phone calls and video chats and just as Luke was nearing the date he could be released, Lindsey fell sick.
"I started just feeling run down and unwell and thought I was coming down with a cold or strep or something — taking care of everything at home, just kind of felt worn out," she said. "I went to the doctor to be sure, just because of COVID going on and knowing Luke was coming home. I wanted to make sure that there was nothing seriously wrong."
She was tested for coronavirus and the result came back negative. But she ended up in urgent care as her fever spiked and lasted several days. Blood work then revealed her white blood cell count was low, meaning her immune system was battling something, and losing.
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She was admitted to hospital and isolated for her own sake. On May 17, she was diagnosed with the exact same cancer as Luke.
"It was just shock. Once they told me there was something up with my white blood cells I had a hunch in the back of my mind [that it was cancer] but when they … told me that it was B-cell ALL it was just, oh wow.
"It's just been mind-boggling. I could see a couple our age getting maybe two different types of cancers or two different diseases or something like that. But the fact that we both got the exact same thing, pretty much the only thing you can really think is how? And wow."
Once she received the diagnosis, Lindsey was moved up to the same ward that Luke was on. They had about 24 hours together before he went home alone, on his 29th birthday.
"It had been so long since we'd actually seen each other and taked face to face," Lindsey, 28, said from her room at HSC, where she is undergoing chemotherapy. "I wish I could have been longer but at the same time I knew that he didn't need to be here anymore."
Luke is now at home, gathering his strength in order to become the caregiver for his wife.
"I'm doing what I can to get myself in a position where, when she comes home, I can do most of the quote-unquote heavy lifting. I really can't do much heavy lifting but I'll try and do the things that I can in order to make her recovery as easy as my recovery was while she was helping me," he said.
Lindsey keeps a blog about the couple's tribulations, called Life, Love, and Leukemia, saying that sharing their story helps her to process what is going on. She's taking things day by day, and "trying to focus on the positives and keep my energy up and rest when I need to listen to my body."
She's in the early stage of intense treatment to put the body into remission. It didn't work for Luke, which is why he needed the transplants. If Lindsey can get to where there's no sign of the leukemia, she can move on to maintenance therapy for the next two years.
Luke, meanwhile, will get a test done in a few weeks to see if the donor cells are working. While it is an aggressive cancer, it is treatable, with a cure rate for young adults of about 70 per cent, Paulson said.
The couple's innate curiosity about science and their own well-being has led them to research the reasons for their bad luck. But they've come up empty.
If there was any type of environmental connection there should be clusters from the area where they live, but that's not the case.
"It's just the two of us who have been hit by this," Luke said, adding he was sick even before Lindsey even moved to Winnipeg. "I would like to know why it happened but if I don't ever know, as long as I can get past this thing I'm okay with that."
There's also not a genetic explanation, said Paulson.
"There are some rare pediatric disorders that are associated with higher rates of this type of leukemia but in adults it is just pure bad luck — incredibly, ridiculously bad luck for this to happen to two people who are connected," he said.
"It is just a ridiculously rare freak coincidence."
With files from Marcy Markusa