Doctors have told the family no options remain and have given the 34-year-old six months to live. 'I'm scared a little bit. Scared how it's going to happen and what it's going to look like at the end.'
Raffaele Spera Jr. with his wife, Cristina Bilbao, and children Damiano and Ariana at a park near their home in Montreal on Saturday, Sept. 5, 2020. Spera, a former offensive lineman with McGill University, is fighting leukemia and has been told he has six months to live. PHOTO BY JOHN MAHONEY /Montreal Gazette
Raffaele Junior Spera never got sick. No colds in the winter, never caught the flu or developed a fever. Never had even so much as a headache. He figured his immune system was strong and, as a former offensive lineman at McGill a decade ago, the father of two young children was entering the prime of his life.
Besides, there was no history of cancer in the family.
But everything changed for the engaging and personable Spera last Oct. 14 when, after complaining of lower back pain, he was diagnosed withacute lymphoblastic leukemia — a cancer of the lymphoid line of blood cells.
Following months of treatments, including chemotherapy and other clinical trials, Spera’s kidneys have failed and he’s on dialysis three times per week. Doctors at Maisonneuve-Rosemont Hospital have told the family no options remain and have given the 34-year-old six months to live.
“I’m scared a little bit. Scared how it’s going to happen and what it’s going to look like at the end,” a remarkably calm, although at times an understandably emotional, Spera told the Montreal Gazette by telephone. “It’s just unfortunate I have to put (my family) through this. This is what bothers me. I feel like it’s my fault.
“It’s been tough. There’s been a lot of soul searching, trying to figure out what to do, trying to get my stuff (his affairs) together, make sure everything’s prepared. If, God forbid, something happens, at least everything will be prepared.”
The last 11 months have been rough on the family, the coronavirus complicating matters exponentially. Things have slightly improved since Spera returned home and he can spend time with his children — 5-year-old Damiano and Ariana, born just before his diagnosis and too young to understand.
The rock behind the family is Cristina Bilbao, Spera’s wife, but so much more. They’ve been married seven years, started dating when both were 17. He was the popular kid in school; she, the shy and timid type. Spera brought her out of her shell, the couple becoming inseparable. And now, it’s him leaning on her for support.
“He’s an amazing person, an amazing and dedicated father. He cares for everybody and puts himself last,” said Bilbao, who has taken sick leave from her job as an administrative secretary. “We’re just trying to be as strong as we can for him, keep positive and not show much emotion in front of him.
“Nobody should have to go through this. Nobody. It’s just not fair.”
Other than losing his hair and considerable weight from his 6-foot-1, 370-pound frame — blame it on bad hospital food — Raffaele Spera Jr. said he feels good and has had no side effects or pain, although he tires easily, is weak and struggles completing even menial tasks. PHOTO BY JOHN MAHONEY /Montreal Gazette
Spera was in remission last November while the search was on for a bone marrow transplant donor. But he had a relapse in March. Two months later, three potential international donors were found. The closest match underwent the procedure and the cells were frozen. But because he’s no longer in remission and there were too many leukemia cells in Spera’s blood, the transplant no longer remains an option.
There was a small window, in May, when it could have been performed, but Spera’s battery of doctors advised a different treatment — blinatumomab, a biopharmaceutical drug, approved in December 2014 by the U.S. Food and Drug Administration.
But the results proved negative. At that point, doctors told the family they should have, in retrospect, attempted the transplant.
“They did the best they could and worked as hard as they could to cure my husband,” Bilbao said. “I don’t blame anyone at all, although it’s sad there was a chance to try and do the transplant. Unfortunately, because of the whole situation and complications, it didn’t happen.”
Other than losing his hair and considerable weight from his 6-foot-1, 370-pound frame — blame it on bad hospital food — Spera said he feels good and has had no side effects or pain, although he tires easily, is weak and struggles completing even menial tasks.
But the fight’s not over, Spera vowed.
It was in late August that Anthony Siggia, one of Spera’s closest friends, decided to establish a GoFundMe crowdfunding campaign, with the help of Bilbao’s brother, Jonathan, when everyone realized their Canadian options had been exhausted. Created six days ago, and with a goal of $100,000, more than $117,500 had been raised by Monday evening.
Contact has been established with doctors in Great Britain, Italy and the U.S., but one specialist in Texas advised it would cost US$76,000 just to review the file.
“You can’t help but be emotional when you look at the outreach,” Siggia said. “I never realized the power of social media. My faith in humanity has been restored. To see the amount of people pulling together. We pray something positive will come out of this.”
The two have known each other 25 years, dating back to their secondary school days, and played junior football together with the St. Léonard Cougars. They were in each other’s wedding parties and, although not related by blood, Siggia said Spera’s as close to him as a brother.
“I have a hard time accepting this,” he said. “It’s terrible to think he won’t be around.”
While Spera said he hasn’t stopped fighting, even he admits uncertainty whether the tremendous odds he’s facing can be overcome. But he has a message for everyone: “Don’t forget to spend time with your family,” he said, choking back tears. “Enjoy yourself, because you never know.”