His best option for life
Phil Secord hopes to fight leukemia with treatment in the U.S.
Phil is home. Home with his nine-month-old daughter, Ellie, whose generous offering of smiles brings him the best joy. And yet, not far under the intensity of his happiness is an underlying, terrifying fear of dying before they really get to know each other.
“She makes me cry,” says Phil Secord, 31.
“It’s exciting to be home, and I love it …” he begins, as his words ebb into the silence of reflection. He begins again, his voice barely audible this time through a sudden release of tears.
“If anything happens to me, I just want her to know who I am.”
Then Phil manages a smile. The guy who was always the life of the party jokes that she might never know him as the once 300-pound bulk of a dad who worked in the blast furnace at Dofasco, with the long shoulderlength hair he was growing to raise money for cancer, and thick beard he had before the chemotherapy.
Ellie bounces on her mother Amberley’s knee and babbles at high volume.
“She’s yelling at you,” says Amberley, to Phil.
He smiles. “Yeah, she’s telling me to stop crying.”
Phil is home with his wife, Amberley Secord, 27. She is his strongest advocate, and his link to life. She studies, memorizes and swallows with a frantic hunger every medical detail about the rare leukemia he is fighting. She learns terminologies, absorbs information about drugs, cells and other terms with long, complicated names. She runs online marathons, devouring information to prepare herself for conversations with Phil’s doctors. And she’s forever on the phone, exploring treatment options when others seem to have given up. Two weeks ago, Phil came home. He came home after having spent the previous two months at the Juravinski hospital in Hamilton.
Last summer, they bought a bungalow next door to Amberley’s parents, Kimberley and Bob Gaspich, in anticipation of baby Ellie’s arrival. It all seemed perfect. A baby. A new home. Next door to experienced baby sitters. They placed stepping stones across their lawns, leading from one front door to the other.
If anything happens to me, I just want her to know who I am.”
Phil Secord
And then, last September and two months before Ellie was born, Phil was side-swiped with the diagnosis of leukemia.
He had a bone marrow transplant this spring, but the disease returned with a vengeance that exhausted conventional treatment options.
They are not giving up. They married in June, in a small ceremony in the Juravinski courtyard. And Amberley, who is on maternity leave from her highway enforcement job with the Ministry of Transportation, has launched a crowd sourcing campaign to raise $630,000 needed to send Phil to a clinical trial in the U.S. The fund sits at about $61,000, not including money raised at two events this past weekend.
The treatment he would receive at the Memorial Sloan Kettering Cancer Center in New York, N.Y., is not offered in Canada. The couple was connected with the hospital through the Leukemia and Lymphoma Society of Canada, an organization with experts who match people to clinical trails around the world.
Yet, it comes at a steep price. Neither of their private insurance plans offer coverage.
And then on this day, a phone call interrupts their thoughts. A call of hope. A representative from Sloan Kettering is offering Phil a consultation with a hematologic oncologist. Arrangements will be made soon.
Cost for the initial visit, tests and care plan: $40,000.
Amberley ends the call with a smile, her thoughts spinning in a stream of words. Will they fly or drive? Probably fly; Phil couldn’t handle the long drive. Where will they stay? Will they take Ellie; no, not this time.
It’s the best option for life, says Amberley.
A second possibility rests with a drug used in Canada, but to treat conditions other than leukemia. It would not be covered by OHIP, says Amberley.
All this is weight on her shoulders. And yet she deflects her own anxiety back to Phil.
“Phil’s scared,” she says. “He’s nervous. It’s hard on him.
“It’s so hard to think that no one at the (Juravinski) hospital has a cure for him.”
He was tired of being there. Living among sick people. Walking circles around the floor, watching The Price is Right to pass time. Obsessed by blood count numbers that were beyond his ability to control. Missing his little girl. And finally, the death of his friend, Steve Casara, a man who was Phil’s roommate for a period of time at Juravinski. He died of cancer at age 59, and asked that memorial donations go to Phil.
“After his friend died, he was sad all the time,” says Amberley.
And so, in desperate need of a break, and his condition somewhat stable, he came home.
His health-care team told the couple: “Go home and enjoy your time with your family,” says Amberley.
So, he did. Without a functioning immune system, Amberley’s mother spent hours disinfecting their home for his arrival.
He is home. And yet, his grasp on home is precarious.
Phil returns to Juravinski three times a week. His blood is tested, and then he spends the day being given the inevitable life-sustaining doses of blood, platelets, magnesium or potassium.
During any visit, he fears being told he’s too sick to leave.
But for now, he is thankful to be home.
“It makes me feel like I’m healing,” says Phil. “Home is my family. That’s where I want to go.”