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Will an 11-year-old boy from Cuba make it in time to a Miami hospital to save his life?

Miami Herald 11/23/2022 Rose Monique Varela Henriquez, Miami Herald

José Camilo Cateura Díaz is running out time.

The 11-year-old boy from Cuba was diagnosed with leukemia, the most common childhood cancer, in November 2020. Since then, his childhood has been filled with suffering, tears, pain — and uncertainty.

While the survival rate for patients like him is near 90%, his chances could be drastically less. The lack of medical technology in Cuba and the endless processing of visas to come to Miami for a cure have made life uncertain.

Miami oncologist Dr. Guillermo R. De Angulo, with Nicklaus Children’s Hospital near South Miami, said that “although in Cuba they have excellent doctors, the problem is that they lack the tools they need to put him in complete remission.”

De Angulo, a specialist in hematology and oncology, is ready to receive the Cuban boy at Nicklaus, where he would undergo an intense regimen of chemotherapy and, eventually, a bone marrow transplant, he told el Nuevo Herald.

A life put on the waiting list

The cumbersome process to save the life of José Camilo has not started because the child is waiting for his request for humanitarian parole to be approved by the U.S. Citizenship and Immigration Services.

It’s hard to tell for sure how long he’ll have to wait.

“USCIS processing times are not set in stone,” said immigration attorney Zulimary Maymi-Serrano, a legal intermediary between the family in Cuba and the U.S. agency.

Adding to that uncertainty is processing of applications taking longer due to the global migration crises. It’s estimated that the agency has received more than 40,000 applications for humanitarian parole this year, a number that continues to rise due to the war between Russia and Ukraine.

The child’s mother, Judith Díaz Valentí, says that as time passes, the health of her son keeps worsening.

“They say it could take 90 days. My child doesn’t even have 30 days. He needs it to happen now. It hurts me to say it, but that’s how it is. We don’t have time,” she said in a telephone conversation with el Nuevo Herald from Cuba.

Weeping, the woman shared her fear that the immigration application will be denied or approved too late.

“I’m afraid they’ll tell me that he can’t travel and if he can’t travel, he won’t be saved, because they don’t have anything to do here anymore,” she said.

USCIS declined to comment on the case processing, citing privacy.

“Adjudicators evaluate each application for immigration benefits fairly, humanely, and efficiently on a case-by-case basis before issuing a determination,” said agency spokesperson Ana E. Santiago.

José Camilo’s muscle pain has worsened in recent days, and he has a high fever.

“We received a call from the lead oncologist who treats his case, and his condition is deteriorating daily since they have exhausted all the medicines and resources available to treat him in Cuba. This is causing a huge setback to his health and well-being and can be fatal if not treated in time,” De Angulo said.

A battle for health is being waged in Cuba

Milo, as his family affectionately calls him, has a passion for art. His mother recounts that when he was little, he didn’t like to visit the children’s circle, as day nurseries are called in Cuba. One day, when he got home, he used several markers to paint a circle on the floor of the living room with images of his father and his school friends.

Now his father, Jesús Cateura, accompanies him in the hospital bubble because he is the one who “manages to hide a little better” the sadness of seeing his son undergo painful procedures like a recent one without anesthesia because the hospital had run out, according to his family.

Lack of medical staff at the Institute of Hematology and Immunology Dr C. José Manuel Ballester Santovenia, where José Camilo is treated in Havana, has also affected his treatment. He suffered an infection because the nurses did not realize that they had to change a tube in his arm in time, his family says.

“With a child that has no defenses in his body, a small infection is something very serious,” said his mother, who strives to make her son’s treatment as less distressing as possible.

“We have had to ask that they send us catheters and medicines from other countries such as the United States, Italy, and Spain because local hospitals don’t have them,” she explained. “They tell us that it’s not like that at the Nicklaus clinic, that you don’t have to go through so much. Here the doctors have tried with what they have.”

Although the Cuban government provides them with a food basket, it’s not enough to meet the child’s needs. The family has turned to churches, friends and relatives abroad who have contributed to José Camilo’s nutrition.

“Here it’s very hard to get food. In Cuba there are no basic foods for a healthy diet, much less one that provides the nutrients he needs due to his health condition,” his mother said.

Medical steps

José Camilo suffered a relapse in August that could have been avoided, according to De Angulo. “Maybe he would have gone into remission without relapse, but it’s very difficult to know why because the biological studies that are done here couldn’t be done there,” he said, explaining that the treatment applied in the United States is specific for the type of leukemia that each patient presents.

Instead, the only method applied in Cuba is intensive chemotherapy, a procedure that would put José Camilo at risk. “In the current clinical state of the patient, it is not recommended, due to the high risk of developing fatal complications,” Dr. Gustavo Barroso Sánchez, a specialist in hematology in Havana, stated in a letter.

After undergoing a month of chemotherapy to prevent the disease from developing further, José Camilo suffered digestive bleeding that nearly killed him. “Only with the hand of God they were able to control it,” said his mother.

The emergency occurred in the midst of the protests that arose from the blackouts in Cuba caused by Hurricane Ian. “We were without power for a few days, but at the time we were living, we didn’t even notice it. I don’t care about anything else,” Díaz Valentí said.

While thousands of Cubans struggle to leave the country in search of better conditions, Díaz Valentí only cares about one thing — her son’s life.

“I don’t want anything for myself. I’m not looking for a way to leave the country, nor an economic improvement. I’m not going now. I’m going to be without my child for a while, without seeing him. And no, it doesn’t matter, the only thing I want is for him to be well and that they can cure him,” she said through tears.

If the humanitarian parole is approved, José Camilo would travel to Miami with his father, who made it clear that he is not interested in permanently migrating to the country either.

“Our closest relatives remain in Cuba, as well as our whole life, which we want to resume together with José Camilo,” Cateura said. “I have no intention of violating the immigration laws of the United States. I am only begging for an opportunity to go and save the life of our little boy.”

In the near future, his mother hopes to join her husband and son in Florida during the temporary stay. She would fly with the boy’s brother, who the doctors consider to have a high probability of being the bone marrow donor who José Camilo needs.

The brother, Jean Manuel Cateura Díaz, is a 15-year-old who has also had to put his life on hold for Milo’s well-being. Since they were little, they have been very close, and his brother’s illness has affected him deeply. In fact, he is even willing to overcome his fear of hospitals to give Milo the greatest gift — life.

“Although I don’t like hospitals or needles, I am willing to give him what he needs from me because they say that I am the one who can save him,” he said.

The last hope

The requests for humanitarian parole for José Camilo and his father were submitted almost a month ago, but it was not until last week that USCIS notified the family that they would be processing the case expeditiously.

“That doesn’t mean that they are giving us a decision, but that they are going to pass the case on to an adjudicating official before the pipeline of cases that are on hold because it meets the emergency requirements,” explained attorney Maymi-Serrano.

While the bureaucratic process drags on, just 90 miles away from Florida a mother is agonizing and heartbroken seeing the life of her child possibly slip away.

“We are so close to Miami and it has become so far away,” she said, fearing that her son will become “another victim of the scarcity and misery that exists in Cuba today.”

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