The chances of two parents having cancer at the same time are low — but not impossible.
When Jack Phillips found lumps in his throat at the beginning of the pandemic, he knew something was wrong. After seeing a nurse practitioner in Carman, he was referred to CancerCare Manitoba the same day, and talked with a doctor at Boundary Trails Health Centre that afternoon.
It wasn’t until the beginning of May — almost two months later — that Jack got a biopsy for the concerning lumps. He was then diagnosed with lymphoma.
“When I saw the lumps in my neck I kind of knew what it was going to be so it wasn’t a total surprise,” he said. “Still, you don’t want to hear it. You’re hoping it’ll be something else. We very quickly go to a dark place when we think of cancer. You get upset because you’re getting to thinking of retirement, and to think it’ll be taken away from you after working your whole life for it is tough.”
That summer, Jack found out he had marginal zone lymphoma, a rare, slow-growing B-cell lymphoma. It was described to Jack and his wife, Cindy, as a good type of cancer to get if you had to get cancer. Essentially, the couple was told he’d just have to get chemotherapy to put the cancer to sleep for six to eight years, and when it woke up again, they’d repeat the process.
“It was a relief,” said Jack. “It was described as less of a hassle than having diabetes.”
From August 2021 to January 2022, Jack received chemotherapy, and the lumps in his neck started going down instantly. Through the next three months though, Jack’s blood counts were staying low. By the time August 2022 came, his doctors decided to do a bone marrow test, and by the end of September — more than a year after his initial diagnosis — Jack was told his cancer was misdiagnosed. He didn’t have marginal zone lymphoma; he had chronic lymphoma leukemia (CLL), something only three per cent of the population is living with.
CLL is a cancer of the blood and bone marrow. This type of cancer typically progresses more slowly than other types of leukemia, and there are management options for people living with it. According to the Leukemia Foundation, two to 10 per cent of CLL patients will experience Richter’s Syndrome, and Jack was one of those people. The Richter’s Transformation turned his cancer into large B-cell lymphoma, an extremely aggressive cancer.
Though CLL is a slow-growing cancer, Jack’s misdiagnosis allowed it to advance and go through Richter’s Transformation, which gave him a prognosis of 10 months to live.
“That is absolutely shocking to hear,” said Jack. “Because we were told it wasn’t as serious as ‘you’re going to die.’”
Within five days of his new diagnosis, Jack was receiving strong chemotherapy. The goal was to have the cancer slowed enough for him to get a stem cell transplant by February 2022, which was the only thing that could save Jack’s life.
As Jack and Cindy told their three sons what was going on, the family prepared for Jack to have a five-week hospital stay for his stem cell transplants, calculating his return home just in time for spring break.
“Our lives were geared around him getting this stem cell transplant,” said Cindy.
And right in the thick of Jack’s diagnosis, Cindy felt a lump in her breast while running. In October 2022 she went to the doctor to get it checked out, and two months later, she was diagnosed with breast cancer.
“I didn’t want to tell the kids,” she said. “They have one parent with cancer and now both?”
Cindy’s cancer was caught early enough that it was considered “pre cancer”. The January after her diagnosis, doctors removed a golf ball size of tissue from Cindy, followed up with 16 rounds of radiation, and she was deemed cancer-free.
It wasn’t so cut and dry for Jack.
A month before he was due to receive the stem cell transplant treatment, the Phillips found out the chemotherapy was no longer working, and his cancer was back in full force. Though a donor was found and ready, Jack’s stem cell transplant was cancelled.
“That was devastating, absolutely devastating,” said Cindy. “Because now what does that mean? Now, he’s going to die.”
Jack’s oncologist put him on a different chemotherapy that February, but it failed as well. By the end of April 2022, Jack was told he had four to eight weeks to live. His oncologist told him and Cindy she’d referred him to a hospital in Toronto to receive the CAR T cell therapy, a type of cancer immunotherapy treatment that genetically alters a patient’s T cells to destroy cancer cells more effectively. According to the Cleveland Clinic, CAR T cell therapy can sometimes cure some forms of blood cancer and other times, it can help people with certain blood cancers live longer.
The CAR T procedure was Jack’s last resort.
After three weeks of waiting for a call, though, the Phillips had only heard radio silence. Cindy had stopped going to work, had contacted the Canadian Lymphoma Leukemia Society, had talked to everyone and anyone she could, until finally, she phoned the hospital in Toronto herself. That hospital had never heard of Jack Phillips and had no paperwork or referrals for him.
“To know she lied…she lied? I can’t tell you that feeling,” said Cindy.
Jack and Cindy then found out Jack wouldn’t be able to receive the CAR T procedure in Canada as patients whose cancer has undergone the Richter’s Transformation are ineligible to receive the treatment here.
The couple talked with a doctor at the Mayo Clinic who suggested a three-pill cocktail for Jack to start taking immediately. After a battle with his oncologist to do what the Mayo Clinic doctor suggested, the Phillips had to find $100,000 for Jack to take the pills.
“I said ‘I’ll pay it,’” said Cindy. “If that’s what it’s going to take, I’ll find the money.”
Jack was admitted to the hospital for 10 days to receive the medley, locked in a closed ward with the big possibility of going into kidney, liver, or heart failure, and the task of creating a living will. After the 10 days, he felt great, experienced no side effects, and was sent home.
Now, with the Phillips at a stop gap, they had to find a way to get Jack the CAR T cell therapy. The procedure would cost them close to $2 million to have it done in the USA, and the couple knew that just wasn’t an option.
“I’ll work another 50 years and not be able to catch up to that,” said Jack.
So, their niece, who’s also a doctor, contacted doctors across the country who head CAR T programs. After getting jack on a waitlist in Ottawa, their oncologist changed the wording on his pathology report to no longer say he had Richter’s Syndrome — now he could be treated in Canada.
Within days Jack and Cindy were on a plane to Ottawa, where they’d spend the next few months of their lives. He received the life-saving treatment, laying completely still for six hours as they removed his T cells, which went to New Jersey and back to be re-engineered. The procedure worked — Jack felt great and was deemed cancer-free that Thanksgiving.
“That Mayo Clinic doctor saved Jack’s life,” said Cindy. “He bought him time to get to Ottawa.”
They spent that summer in Ottawa while Jack recovered and went for routine bloodwork. Cindy said they were elated and those months were bliss. But come New Year’s 2023, Jack found more lumps.
The CAR T cell therapy got rid of Jack’s CLL. What he found in January 2023 was the more aggressive large B-cell lymphoma that had returned. They got a new oncologist, and started on the path to a stem cell transplant once again.
Jack didn’t start getting radiation until that March. By then, the nickel-sized lump had turned into a tennis ball, and the radiation was so intense, it scorched Jack’s throat to the point of him not being able to swallow for eight days.
The light at the end of the tunnel did start to brighten, though, and at the end of March 2023, Jack got his stem cell transplant from a donor in Germany. There were no statistics for him going in since so few people had gotten as far as him, but to the Phillips’, any number more than zero was a fighting chance.
Jack and Cindy are both cancer-free now, but they have no information to know what the rest of Jack’s life looks like. Cindy’s gone back to work, she and Jack finally got to visit their son at university before he graduated this spring, and they’re finally able to make plans in life again. Jack and Cindy are hoping to meet Jack’s stem cell donor in the future, with big plans to thank her for saving Jack’s life.
Donors like Jack’s save lives every day. Registering to be a stem cell donor is an easy, online process that takes almost no time. People between the ages of 17 and 35 are encouraged to sign up and save lives.
