Two years ago, 16-year-old Estefano Carrión started having difficulty breathing, and his skin turned pale.
Estefano and his family are from Pucallpa, a city in the Peruvian Amazon. Local doctors were unsure what he had. They recommended to his father, Jhony Carrión, that Estefano receive a proper diagnosis in Lima, the capital of Peru.
Once there, they learned that Estefano had leukemia. And, Lima was the only place in Peru where he could get treatment. But even there, hospitals were short on doctors and were running out of medicines and beds, Carrión said.
“The doctor confirmed my suspicion, and told me there’s nothing else we can do.”
This past June, after Estefano finally got a bone-marrow transplant, the cancer reemerged, Carrión said: “The doctor confirmed my suspicion, and told me there’s nothing else we can do.”
But Carrión refused to accept that as the final answer; he looked for other options and found out that Spain is a common destination for cancer patients from Peru, because they can get affordable and high-quality treatment there.
Around 1,800 kids in Peru are diagnosed with leukemia every year, according to the World Health Organization, and many face the same challenges as Estefano and his family. Many die because they can’t get access to treatment in time. So, more and more parents are seeking help abroad, oftentimes, in Spain.
After Carrión spoke with an oncologist in Barcelona, who offered some hope, he needed to find the money for plane tickets. So, he sold all that he had — a piece of land.
“But when we got to the airport, immigration officials said we couldn’t board the plane, because there was a health order from the hospital banning my son from leaving the country,” he said.
Now, this will be the third Christmas that Carrión and Estefano spend at the hospital in Lima. But Carrión said that it also will be the last one, because he’s determined to help his son survive cancer. And that, he said, means bringing him to Spain. No matter what.
Many parents like Carrión do reach Spain with their sick kids. In fact, in the northeast region of Catalonia, health authorities say 1 out of every 4 hospitalized children with cancer is Peruvian.
The families usually arrive with little money — and little more than the name of a hospital. No contacts, no papers. But they’re desperate.
A dire situation in Peru
Karina Pujai is the founder of a Peruvian organization that supports parents of children with cancer. Her daughter was also diagnosed with leukemia when she was 6 years old.
“… we joined forces to demand solutions from the government.”
“Of all the 120 kids that were hospitalized at the same time, my daughter is the only one who survived,” Pujai said. “So, we joined forces to demand solutions from the government.”
They organized public demonstrations, launched fundraising campaigns and started lobbying officials.
In Peru, cancer patients are protected by law. They have the right to receive free treatment in public hospitals, and the government is supposed to pay to send them abroad if necessary care is not available at home. But the law is simply not enforced.
On top of that, parents are forced to pay out of pocket for the medicines needed for chemotherapy.
Mauricio León is an oncologist with the League Against Cancer in Perú.
He said that in general, child cancer has a very good prognosis, and close to 90% of patients tend to do well.
But in Perú, according to official data from 2017, the mortality rate for infant leukemia is 22% — among the highest in Latin America.
Pujoi said her organization has been independently verifying the number of kids with leukemia that die in hospitals in Lima, and she said the mortality rate is now close to 60%.
But León acknowledged that the health care system has problems, including a shortage of doctors, because few universities in Peru offer a medical degree in oncology. Plus, the country’s political instability plays a role.
Over the last five years, Peru has had six presidents and 11 ministries of health.
“Public officials don’t have a long-term plan and don’t take responsibility for the problem,” he said.
Health officials didn’t respond to The World’s multiple requests for comment.
‘Maybe they can save him in Spain’
In a small, dark apartment in a Barcelona suburb, a Peruvian mom coaxed her 11-year-son out of bed. No names, she said, because they don’t have residency papers, and they’re afraid of getting deported.
Her son, who has been suffering from leukemia for three years, is bald and pale, and his skin is peeling from another round of chemotherapy.
“It was really terrible. At first, I couldn’t eat because my mouth was filled with sores. I was tired and sleeping all day,” he said. “This disease can attack you anywhere. Mine started with stomach pains. After that, they found out it was cancer.”
That was in Lima. Doctors there said he needed a bone-marrow transplant, but the waiting list was over two years. Too long in his case, his mom said: “The doctor told me, there’s nothing more we can do. You need to just make sure your boy is comfortable. But how could I accept that, as a mother? I started crying.”
And then, the doctor hugged her and whispered something in her ear: “‘Spain, maybe they can save him in Spain,’” she said. “She didn’t say it as a doctor, but as a mother. She could see how crushed I was. Because it’s not easy to hear that your son isn’t going to make it.”
So, the mom and her husband, a poor miner, sold everything, their tiny house. But it still wasn’t enough for the plane tickets. Somehow, she got online influencers to take up her cause. She went on national TV.
And it worked. People donated. In August, the family landed in Barcelona on tourist visas. All they had was a photo of a children’s hospital from Instagram. They took a taxi straight to the emergency room. The boy was sicker than ever, vomiting from his latest round of chemotherapy.
At first, the mom said, the hospital denied them care. You need to go back to Peru, they said. But a doctor saw the boy on the floor and intervened.
“She was my guardian angel. Because of her, my boy is in treatment.”
“She was my guardian angel. Because of her, my boy is in treatment.”
The boy was in the hospital for weeks. A lot of nights, his parents slept outside on the sidewalk. They had no money. Finally, last month, the boy got the bone-marrow transplant that might save him.
But that procedure hasn’t entirely cured him of cancer, his mom said, talking outside: “It should have disappeared with all those chemicals they gave him. They were so strong, they burned his body. My boy’s skin has practically turned into a hard shell.”
Still she said, she doesn’t regret coming. At home, the only plan left was hospice care. Here, her son still has a fighting chance.
Her son is hopeful: “I want to see my parents happy. I don’t want them to suffer because of me,” he said.
Health care authorities and pediatric oncologists declined to speak to The World for this story. It’s a delicate subject. Usually, if you show up sick to an emergency room, you do get care in Spain. Even if you don’t have insurance.
That policy is off-the-books — based on empathy but against the law. But the publicly funded system does have its limits. And cancer treatment is costly.
Another Peruvian mom in Barcelona, who also asked that her name not be used, is up against those limits. She came to Spain without papers to save her 1-year-old baby who has ocular cancer.
She went to a hospital just after landing but was denied care, she said: “A social worker accused me of trying to sell my baby. Who’s paying you? She asked. I told her, ma’m, ‘How could I sell my own daughter, who’s so sick?’”
They threatened her with deportation, she said. She said that she’s still hoping someone will help her baby, and she doesn’t want to jeopardize that.
For now, she and her baby are living in a Red Cross shelter — waiting — like so many other Peruvian families, for critical care against cancer.
Abby Ardiles contributed to this report.