A chance at life. Cost: $1 million
Phil Secord is so close he can feel life brush up against him.
And yet, he just can’t seem to get a firm hold. Life, indeed hope, are illusive. One minute within his reach, the next so very, very far away.
He felt it and saw it on paper earlier this week. Right in front of him, the words in bold text, in a letter sent from Memorial Sloan-Kettering Cancer Center in New York, confirming a date for his consultation with Dr. Jae Park, a hematologic oncologist and lead physician in the clinical trials that Phil is so hopeful to join.
His 27-year-old wife, Amberley, sat side-by-side with Phil on a sofa in the living room of their St. Catharines bungalow, and read the words with a cautious excitement, as if she was holding a lottery ticket that so far had all winning numbers in sequence.
Your appointment for a Consultation with Dr. Park has been scheduled for: August, 26, 2016 Appointment time: 11 a.m. MSK Haupt Pavilion 425 East 67th St., 4th Floor, Suite 3
It felt real. Phil would have the chance at life that no one in Canada could give him.
And then just as suddenly, life seemed once again to drift out of reach as Amberley digested the next paragraph.
They needed a $1-million deposit, by Friday, then four days away. Amberley stopped reading. She counted the number of zeros. Six. “Can you look at this?” she said to Phil. Phil stared at the number. “That’s a million dollars,” he confirmed. “I’m dead. “That’s it. I’m dead. “There’s no way that’s ever going to happen.”
Through Gofundme, and other fundraisers, they have raised about $61,000.
Amberley said nothing. She got up and paced around the house.
“I had a flow of emotions,” she says. “Anger. Scared. Sad.
“And then my brain started running into overdrive thinking, OK, what can I do.”
What she did, was do what she does best. Get on the phone, and try to untangle yet another complication on the journey to have Phil receive treatment for his rare type of leukemia in the United States.
She is polite: No, actually they don’t have $1 million. (She doesn’t mention the $15-million-or-so estimate found on a second page; an itemized list of possible procedures and respective costs.)
She tries humour: “I don’t think I could sell my organs this quickly in order to come up with that money,” she tells the patient care co-ordinator in New York.
And she remains unstoppable. She delays the appointment date, then writes a letter asking for a price reduction on compassionate grounds.
Phil is 31 and doesn’t want to die. For a year, he has been fighting a rare leukemia that has foiled conventional treatments in Canada, including a bone marrow transplant this spring.
Thing is, Phil doesn’t want to give up on life just yet. He returned home a couple weeks ago, after a two-month stay at the Juravinski hospital.
Amberley, on maternity leave since the couple’s nine-monthold daughter, Ellie, was born in November two months after Phil’s diagnosis, has been his most relentless champion.
Simply put, Phil has two options for life.
One is the clinical trial. A second involves a drug that could be given in Canada but also not covered by OHIP because it’s approved to treat conditions other than leukemia.
In Canada, clinical trials are free to Canadians. Patients search websites like ClinicalTrials.gov and physicians can recommend trials to patients at any point in their treatment, says Jenn Wiernikowski, nurse practitioner in the hematology and stem cell transplant unit, at the Juravinski hospital.
But if there’s nothing available in Canada, patients look across the border despite often exorbitant costs.
“As treatments get more and more elegant, more targeted, more expensive, harder to do, finding the places that are doing the clinical trial you want is getting harder,” says Wiernikowski.
“That’s when sometimes patients and families try to take the lead and find other opportunities.”
While a team of medical experts in Canada would offer their thoughts on the risks and benefits of pursuing out-of-country
Want to help?
To donate to Phil’s medical costs, visit www.gofundme.com/ b6y4hcuk treatment, ultimately the decision rests with the patient.
“Everyone makes their own decisions about what to do, based on their own values and beliefs,” she says.
On this morning, Phil has a visit from registered practical nurse Andrea Ouachi, from St. Elizabeth in St. Catharines. Every week, the area around a small tube inserted through the skin of his arm is cleaned to prevent infection.
As she works, Phil updates Andrea on the news of the appointment in New York, and his frustrations at the impossibility of actually getting there.
“I just keep going. Keep trying,” he says to Andrea.
He pauses, fingering his wedding ring, then shrugs, “Until my
I don’t know what’s worse. Is it there being nothing out there, or there being something out there but you can’t obtain it.” Andrea Ouachi
body shuts down or something. “That’s it. That’s all you can do.” “I don’t know what’s worse,” begins Andrea. “Is it there being nothing out there, or there being something out there but you can’t obtain it.” “Yeah,” says Phil. “It’s right there. It’s dangled in your face,” he says.
“You have hope with what they have out there. But you don’t have enough money to get there.” cclock@postmedia.com