José Enrique knows how to look a challenge in the eye: The former Premier League soccer player faced down countless opponents on the pitch, and battled a persistent knee injury which ultimately led to his retirement as a player in 2017. Unfortunately, another adversary awaited him just off the field: chordoma.
“I’d begun my new career as an agent, and was traveling from Spain to London for an important meeting,” José recalls. “That night, the lights at the restaurant seemed too bright, and the television in the bar looked blurry — I knew something was wrong,” he says. Later, in his hotel room, he suffered a massive headache that pain medication couldn’t touch; the next morning, he was seeing double. “My wife, Amy, was already on her way to meet me, because we had plans to take our nephew to Disneyland Paris,” he says. “Instead, she took me to the hospital.”
At the first hospital, José’s doctors thought he might have a blocked artery in his brain. He was sent to a second hospital, where he underwent painful tests before finally being referred to a neurosurgeon. “That doctor said, ‘We know what this is. I don’t want to scare you, but you have a tumor in your head: a one-in-a-million disease called chordoma,’” José recalls. “Amy and I were stunned. I could barely hear the rest of the explanation. I was in shock.”
He and Amy took a walk to process the news. “Once I had some time to clear my mind, I knew that surgery to remove my tumor was the right solution, and felt ready to face it,” he says. “I told Amy, ‘let’s go for it.’”
Fortunately, José’s experiences with his knee injury gave him a firsthand understanding of the importance of seeking a second opinion — a crucial step for those facing a chordoma diagnosis. This led him to Dr. Juan Antonio Simal, an experienced chordoma neurosurgeon at La Fe University and Polytechnic Hospital in Valencia, Spain. Despite the tricky placement of José’s tumor against a major artery in his brain stem, Dr. Simal safely removed the entire tumor.
For José, the most difficult part of the chordoma journey took place in the immediate aftermath of that surgery. “I had recently been on top of the world, surrounded by tens of thousands of people cheering. Now, I was laying awake alone at night in a hospital bed, unable to move or do anything without help for days on end,” he says.
José credits Amy for making that time more bearable for him. “We shared a sense of humor even through the hardest parts of that hospital stay,” he says.
“I think these situations are more difficult for caregivers than for patients sometimes. The lack of control is scary and hard. Amy saw me doing poorly, in pain, in bed. She took care of everything.”
He also has lasting gratitude for Dr. Simal, now a close friend. As part of his surgical practice, Dr. Simal is working to develop advances aimed at reducing the risk of cerebrospinal fluid leaks, a common complication for skull base chordoma patients.
“He and his team were amazing. I’ve never met anyone like him,” José says.
After his hospital stay, José underwent a two-month regimen of proton beam therapy in Paris. “Being attached to the machine via a mask made me panic a little,” he says, “but the treatment team was so nice and helped me feel comfortable. After the first one, it wasn’t as bad as I feared.”
Amy and the couple’s dog, Simba, stayed in France with José, providing a welcome distraction from his radiation treatments. They even got to take their nephew on the trip to Disneyland Paris that had been canceled at the onset of José’s symptoms.
“Throughout that period, and the time since, Amy has been everything to me. For some people, this sort of thing can break you. But it actually made our relationship stronger,” José says. “If we can get through this, we can get through anything.”
Today, José is healthy, and he and Amy are on the verge of yet another big challenge — but one they’re very much looking forward to: In August, they’ll welcome their first baby.
“You have bad moments in life, and good moments in life. The good moments will come again,” José says. “It may be your turn to be unlucky, but you can get to the other side.”
With the help of our supporters, we’re planning to offer more of our resources in additional languages and countries to help chordoma patients everywhere access the best care and outcomes possible. If you’d like to be notified as we expand our international offerings — beginning with Europe — sign up for our newsletter.