Two Haitian boys battle childhood cancer 700 miles apart
A Haitian teen whose two-year battle with an advanced form of childhood cancer illustrated how the poor and powerless pay the price for the failure of Haiti’s leaders to invest in their medical system, and later rallied a nonprofit medical community into action, has died. He was 19.
Djooly Jeune’s valiant fight came to an end shortly before 6 a.m. Sunday at St. Luke Hospital in Port-au-Prince where he was taken after another rallying effort.
Diagnosed with Burkitt lymphoma, a rare and aggressive form of non-Hodgkin’s lymphoma, Jeune struggled to get treatment in Haiti’s broken healthcare system where doctors are poorly trained, chemotherapy options are limited and treatment can be hours away on a public bus for those who are poor.
“He had dreams,” Jeune’s mother, Angena Altidor, said hours before his death as he lay on a concrete floor in the family’s empty house in the Croix-des-Bouquets suburb, struggling to breathe through his open mouth, his rib cage visible through his emaciated body.
He had been like that, Altidor said, for days: in agony, unable to talk, eat or drink, his bulging facial tumor hidden behind a fresh bandage.
Martha Pearson, a Haitian-American nurse who was instrumental in helping Jeune finally get a proper cancer diagnosis for the fast-growing tumor after at least 10 doctors and hospitals failed to do so, said hours before his passing: “My heart is breaking.”
Pearson first met Jeune and his mother during a medical mission to Haiti in 2018. She would care for Jeune like a son, sending money for the hours-long bus trips between Port-au-Prince and Mirebalais, and anxiously anticipating his daily WhatsApp calls and text messages to ask how she was doing.
“We have a strong bond. I know now that I have an angel in heaven watching over me,” she said. “The last message he sent me, he said, ‘Manmi, konman ou ye, mwen pa ka kanpe.’ ”
Translated: “Mommie, how are you? I cannot stand.”
“That’s the only time he complained about being unable to stand, although he was in excruciating pain every day,” Pearson said about the text in Creole. “I called him the day before he died and I had them put the phone to his ear to tell him that I love him and he will always hold a special place in my heart.”
Last November as his tumor began an aggressive return after a first round of chemotherapy at the University Hospital of Mirebalais failed, Pearson launched a GoFundme campaign with her friend Linda Dwyer, another Haiti volunteer and health professional, to help pay for a new round of chemo and additional medical expenses.
The campaign raised $8,792. On Sunday, with Altidor now facing burial expenses, Pearson was re-mobilizing fundraising efforts.
“My battle is lost,” she said from Miami, where she works for Baptist Health. “I knew it when I didn’t get a message from him yesterday and he was unable to talk to me today when I called. It’s over. I’ve lost a long battle.”
Jeune’s case was first highlighted by the Miami Herald in its 2018 Cancer in Haiti series produced in partnership with the Pulitzer Center on Crisis Reporting. Another person from the series, Guerda Janvier, who was battling cervical cancer, died last December.
Jeune, a shy teen who had been kicked out of school because of his tumor and dreamed of being a doctor, had spent eight months with the growth and had seen five different doctors or dentists and been to an equal number of hospitals before his cancer diagnosis was made.
Following the story about his medical plight and that of another Haitian teen, Djonsly Alcin, who was fortunate enough to be flown to Miami where he’s being treated for an advanced form of brain cancer at Baptist Health, individuals rallied to Jeune’s cause. Djonsly, who has lost his hair because of radiation, just completed his last treatment and will be returning home to Haiti in the next two weeks, said Dwyer, who has been assisting him.
Doctors from St. Luke, the University Hospital of Mirebalais and Innovating Health Haiti, which also provides cancer treatment, met to discuss his care in resource-limited Haiti. Behind the scenes, phone calls were made, albeit it without success, to get him pro-bono care in the United States, where there are more treatment options available and the disease has a high long-term survival rate — 80 to 90 percent — but requires prompt and aggressive chemotherapy.
Meanwhile, a local Haiti human rights activist teamed up with the Mirebalais hospital, where Jeune was undergoing treatment, to help him and his mother get identity documents and a passport. After reading the article, local business owner Dimitri Vorbe donated a $5,000 check to purchase drugs for his follow-up chemo while another business owner offered groceries to the family, and on Saturday agreed to pay for Jeune’s care at St. Luke.
“Djooly was brave and stoic to the end,” said Dr. Roger Mixter, a volunteer plastic surgeon from Wisconsin who had consulted on the case at the Mirebalais Hospital and was instrumental in rallying health professionals for his care. “I will always remember him for bringing doctors, health systems and countries together, not only for his fight but for cancer patients to come.”
In his final days, Jeune’s impending death had also come to illustrate how Haiti still has a ways to go with palliative care. After watching Jeune slowly die in front of her and his siblings’ eyes, Altidor said she called his attending physician at the University Hospital of Mirebalais and asked “if she could give me a chance to come with Djooly to the hospital.”
“She said, ‘No,’ because all we could do, we did,” Altidor said, recalling the doctor’s response.
“I know that we all have to go some day,” Altidor continued, “but if he has to die, it would be better for him to do so while under the care of a doctor.”
Loune Viaud, executive director of Zanmi Lasante, the local nonprofit that runs the University of Mirebalais Hospital along with Boston-based Partners In Health, later overrode that decision and sent an ambulance from the hospital to Port-au-Prince to come pick up the teen.
The Haitian businessman, who had stepped up to help the family after reading about Jeune’s plight, arranged with another physician — Dr. Pascale Yola Gassant — to have him hospitalized at private St. Luke. Viaud agreed to have her ambulance take him there, where he died nine hours later.
Haiti’s leading pediatric oncologist, Gassant had initially turned down Jeune’s case because her drugs weren’t strong enough to treat him and he was too old for the pediatric cancer program at St. Luke’s sister hospital, St. Damien Pediatric, where there are only 10 hospital beds devoted to treating childhood cancer.
Later, after learning that doctors were preparing to cut into the tumor — a procedure long abandoned for Burkitt lymphoma in the U.S. — Gassant reached out to St. Jude Children’s Research Hospital in Tennessee, which partners with St. Damien. She asked whether she could use a recently launched Burkitt lymphoma protocol for Jeune. St. Jude agreed and Gassant trained nurses at Mirebalais and a doctor on how to treat Jeune with the new chemo doses.
While the protocol provided some initial relief and extended his life by several months, it did not give Jeune the remission he and his mother so desired. Jeune’s tumor returned even more aggressively than before, and Haiti lacked the facilities and medical expertise to provide more aggressive treatment options.
“Haiti has to have a good health policy that includes a national program for childhood cancer with universal access to healthcare,” Gassant said.
Still, out of the treatment came an unprecedented collaboration between doctors at Mirebalais and St. Damien, who in December signed an agreement that for the first time gives children over the age of 14 with pediatric cancer in Haiti the possibility of treatment at Mirebalais.
The hospital, which recently received some additional cancer funding, is now struggling to hire a medical oncologist to run its cancer program in Central Haiti.