Joseph’s life turned upside down when he lost his arm to an aggressive cancer. While his life remains in balance, St. Damien and his family remain strong for him. April 16, 2021 - Haiti
Joseph during a chemotherapy session.
Joseph* is 14-years-old. He is originally from Port-Salut, a coastal town famous for its tourism on the southern tip of Haiti, 221 km from the capital, Port-au-Prince. There he lives with his with his mother, Paula, aged 43, and his younger brother, Axel, 10. His youngest brother has a normal life and goes to school regularly.
While his mother runs a small retail store, Joseph’s father stays in Port-Salut taking care of the house. His main source of income is the sale of spare motorcycle parts, which does not bring in much money, thus, making it hard for the family to make-ends-meet.
In January 2020, Joseph started to feel swelling and intense pain in his left arm. His mother, panicking, took him to a hospital in Port-Salut, but he was quickly transferred to another hospital in the neighboring town, Les Cayes, 30 km away, where medical staff performed an x-ray which revealed a tumor.
“I didn’t know what a tumor was. I was hearing the word for the first time,” says Paula, still remembering the moment of distress. “They told me that there two types of tumor: malignant and benign. Joseph’s tumor was malignant, so doctors had to act fast.”
The doctors on-site deducted that emergency surgery was needed which Paula agreed to. The arm continued swelling after the operation. Seeing this, the doctors then transferred Joseph to St. Damien Hospital to receive the required care in June 2020.
Upon arrival, Joseph was seen to by Doctor Pascale Gassant, Head of the Oncology Unit of St. Damien Pediatric, who after tests, knew that Joseph’s illness was critical.
“Joseph has a bone tumor [chondroblastic osteosarcoma] proximal part on the left humerus,” explains Dr Pascale. “This is most common amongst older children, adolescents and young adults, 15% of patients have metastases when diagnosed, especially in the lungs. Certain genetic and/or environmental factors can predispose to this pathology.”
“The treatment is multidisciplinary and includes chemotherapy and adequate local control with surgery. Amputation and disarticulation are reserved for large tumors with large local extension and adjacent structures, although surgery is unlikely in Haiti, as cancers are often diagnosed too late. This tumor is not sensitive to radiation therapy, either.”
From 2007 to December 2019, NPH recorded 17 patients with osteosarcoma, with seven new cases alone in 2019. NPH medics believe that the majority of patients go without a diagnosis, are not referred in a timely manner and are likely to die without it.
When Joseph learned that he had been diagnosed with osteosarcoma, he cried. His world had been turned upside down. The prognosis wasn’t looking positive to begin with, but the words hit him. He was going to lose his arm.
“I didn't want to go back home to Port-Salut, even less to school. I am afraid of not being liked by other children because of my amputated arm. I understood what I have is very serious. I was also sad because I knew I would not be able to ride my motorcycle again.”
Joseph is an introverted teenager. He only speaks if asked a question, and has little or no interaction with other cancer patients in the oncology unit. Because of his illness, he can no longer go to school, which bothers him due to his fondness for studying science. One of his favorite hobbies is visiting the cinema and watching cowboy movies.
With a huge smile on his face, he says his preferred nurse is Madonie Raymond because of her professionalism. He is more than satisfied and expresses much gratitude with the care he has received, even though he rarely talks.
However, the financial situation is constant worry for the family. Due to his illness, Paula is at her bedside every day, hence the abandonment of all her other activities. While she resides in Port-au-Prince, she stays with members of the family and borrows money to cover the costs of the hospitalization.
In the last few months, violent demonstrations have plagued the nation. At times it has been difficult for her to visit Joseph because of the disorder, road blocks and chaos on the streets. On several occasions, she has had to turn back. Suffice to say, this has only added to the anguish.
“Currently, there has been a substantial decrease in mass (<50%), for the local control. Joseph has benefited from the amputation but we are awaiting the result of a pathology test to decide and know the histological response to the chemotherapy,” concludes Doctor Pascal.
Without St. Damien, due to the adverse prognosis, Joseph would probably have still had his arm amputated, but the cancer would have returned and he’d have died. However, NPH stands by his family and waits for the pathology result to decide the next cause of action. If there is more than 10% of a viable tumor in the amputated limb, the prognosis is poor because the risk of relapse or recurrence is high.
Paula believes in God, but she also has a lot of confidence in how the doctors at St. Damien Hospital, the only hospital in the country to treat childhood cancer. “Sometimes I feel very distressed. It is difficult to accept that this disease causes my son huge pain. My other son is also sad about his brother’s amputation and absence. However, I fervently hope that the care provided by the doctors will bear fruit and my son will overcome this cancer.”
To support children like Joseph at St. Damien Hospital, visit:nph.org.
*Patient's name changed for privacy reasons.
Damarie Egide Voight St. Damien Pediatric Hospital Communication Officer
You may be only one person in the world, but you may be all the world to one child.
—Fr. William Wasson