Hope pinned on trial drug
Phil’s leukemia is back. In actual fact, it never really went away. Phil Secord, the 31-year-old husband and father from St. Catharines has been fighting a rare form of leukemia for a year and a half.
But for a while it was being managed with regular trips to Juravinski Hospital for transfusions. Held back, precariously, like a shark on a fishing line.
Phil could live at home, as normally as someone can knowing inside them is a disease that could take their life. He celebrated his baby girl’s first birthday in November. Then, Christmas. Ellie is walking now. Talking. She can say please. Thank you. Mommy and Daddy.
She is a big reason Phil is still alive.
“Family,” he says. “It’s just the wife and daughter. Daughter, wife. Sometimes more the daughter, ’cause you know,” he says, laughing. “That’s what keeps me going.”
A month ago, the fishing line snapped.
The leukemia returned sometime before Valentine’s Day. A biopsy of bone marrow from his hip showed many, many leukemia cells. Far, too many, says Phil’s wife, Amberley.
And although it was risky, he was ready to try a traditional, chemotherapy drug he’d been given before.
“Most likely it would kill him,” said Amberley. “He’s been hit with the strong chemo so many times, that the odds of him surviving again, they were slim to none.” But they were ready. “We said we were going to do it,” said Amberley. “He’s not just going to go home and die.
“We were fully prepared and understood, that most likely he wasn’t going to leave the hospital.”
And then, just before the treatment was to begin, there was another glimmer of hope.
Phil was sent to Princess Margaret hospital to be part of a drug trial.
Now all their hopes in the world rest with a pill so new it doesn’t yet have a name. It’s identified as 200200 and Phil is taking it along with another conventional chemotherapy pill. The hope is to again send his leukemia into remission. As yet, it has not. And there are risks. Scary, life-and death risks, like brain swelling, says Amberley.
He’s not sleeping well, is tired and his mouth is full of sores.
“My mouth feels like I’ve been burned, or cut. Take an SOS pad to it, that’s what it feels like,” says Phil.
The dose of 200200 will be increased next week. And if this drug doesn’t work, they’ve been told there’s another option, a drug called Interleukin 12, says Amberley.
“I’m basically a guinea pig,” says Phil. “That’s what I am. And I embrace it.
“My disease isn’t going to vanish. But if I can find a way to postpone it from blowing up, or getting out of control, if I can find something to maintain it, then I can live a life.
“And why not? I’m still young. I just don’t want to sit around and do nothing.”
Indeed, there isn’t a day that doesn’t involve a trip to a hospital somewhere. The couple either stays in Toronto, sleeping at a hotel so Phil can be at the Princess Margaret soon after sunrise, or if he’s allowed home he has to travel to another hospital for transfusions and blood work.
The trial drug is at no cost to Phil . But the costs of travel, hotel stays at a reduced patient rate of $189 a night and an estimated $3,000 in fees for additional drugs not covered by health plans is exacerbating the stress of being sick.
Amberley’s parents are taking care of their daughter, Ellie.
“Coping, at this point, I feel like I’m at my breaking point,” says Amberley. “I don’t feel like I’m really coping anymore. It’s very tough.”
Amberley, who spent most of her maternity leave advocating for Phil, is now on sick leave from her job in highway enforcement with the Ministry of Transportation in Niagara. Phil worked in the blast furnace at Dofasco.
Last spring, he had a bone marrow transplant but the disease returned with a vengeance. And then, having
exhausted all possible conventional treatments, his hope for survival rested on a clinical trial in the U.S. A very expensive, trial. Think $1 million, just to start.
Friends and family have held several Fight 4 Phil fundraisers and a Gofundme account was started. It sits at about $87,000.
And yet, for now, Phil’s energy comes from hope and love. And life from a nameless pill. “I am a guinea pig. But I’m the willing guinea pig who says, ‘You know what? I’ll do it.’
“Who cares if I have a sore mouth. Who cares if I have to go to the bathroom every five seconds. “For one, I’m still waking up. “For two, I can see my family, which is great.
“And then three, if they can get control of it in me … then somebody’s got to try it, right?”