In 2005, Daniel Arce was diagnosed with osteosarcoma, the most common type of primary bone cancer. Only 15 when he was diagnosed, Arce spent the next four years fighting to become healthy. It was a battle he lost.
Long sessions of chemotherapy and surgery were exhausting. But Arce also found it difficult to do the things other healthy teenagers could do. He often grew frustrated.
With the help of his pediatrician, Arce obtained special permission to be admitted to the National Children’s Hospital. Although the hospital treats younger patients, Arce was admitted because the hospital is the best-equipped in Costa Rica to treat teenage cancer patients.
Later, on his mother’s insurance, Arce was accepted for treatment at the Hackensack Hospital in New Jersey, in the United States. He was sent to a wing of the hospital that specialized in treating teenagers. That experience, Arce said at the time, changed his life.
In the U.S., Arce was exposed to hospitals that specialized in treating teenagers with osteosarcoma, leukemia and lymphoma – the three most common cancer types among teenagers. For the first time in his life, being a normal teenager and staying in the hospital were not completely incompatible.
Arce continued his studies by using the hospital’s Wi-Fi connection. He played video games. His room and surroundings allowed for visits from parents and friends. The medical staff was well trained and prepared. Equally important, the hospital looked different, more appropriate for teenagers.
Before Arce died in 2008, he dreamed of bringing the type of care he experienced in the U.S. to Costa Rica.
Today, that dream is being kept alive by Proyecto Daniel (Project Daniel), an association founded by Arce’s parents, Ligia Badilla and Fernando Arce. They are helped by volunteers and former teenage cancer patients.
A total of 40 volunteers work with the association to visit and accompany teenagers who are being treated for cancer at local San José hospitals.
“I was treated for cancer in a general hospital and it was a nightmare. I had to see older people die of cancer, and that did not give me hope,” said volunteer Marianela Sánchez. “I understand those kids, and I can let them know that they can heal, despite the horrible reality that they have to see in a general hospital.”
Shirley Segura, a volunteer now in her 40s, was also treated for osteosarcoma as a teenager.
“If you are a teenager at the [National] Children’s Hospital, most beds are too small and your legs dangle over the side,” Segura said. “You have no other patients to relate to, and you’re surrounded with drawings and walls decorated for young children. You always feel like the odd one out.”
Natasha Vargas was also treated as a teenager at the same hospital. She recalls that when lining up for chemotherapy treatments, parents accompanying other children would mistake her for another parent. “I remember having to explain, while suffering from chemo nausea, that I was a ‘grown-up patient’ in the children’s hospital,” she said.
In Costa Rica, no statistics exist for teenagers with cancer. Proyecto Daniel volunteers estimate that 200 teenagers are registered in public hospitals for cancer treatment. Very few patients are admitted as exceptions to the National Children’s Hospital, and most receive treatment at Hospital México, San Juan de Diós Hospital and Calderón Guardia Hospital, all in San José.
With two years of experience under their belt, Proyecto Daniel volunteers say they understand the struggles of families with teenage patients.
“We see a lot of kids coming from single-mother families, where in most cases there are younger brothers and sisters to take care of,” said Andrea Arce, a volunteer and recovered cancer patient. “In many cases, parents can’t provide good company to their sick children.”
To help families, Proyecto Daniel is constantly searching for funding and sponsorship. The association provides groceries to families when parents are forced to stop working. Every December, they organize a holiday party for 70 teenagers, who socialize, meet other patients, share stories and get out of the hospital for a bit of fun.
But the association’s biggest and most ambitious project is yet to come, members said. Proyecto Daniel was given the opportunity to adapt for teenage patients two hospital rooms at San Juan de Diós Hospital. The rooms will be used to treat five teenage patients. Proyecto Daniel will provide state-of-the-art medical equipment and other “luxury items.”
To make rooms “teenage friendly,” volunteers hope to install flat-screen TVs, Internet connection, computers and video game consoles. “If we improve the space where a teenager has to spend most of the healing process, we will automatically improve quality of life and the chances to beat cancer,” Segura said.
Proyecto Daniel volunteers also hope to create a program to allow patients to take classes and study while at the hospital.
The association has so far received donations of $12,000 and medical equipment.
But to make Daniel Arce’s dream become a reality on a smaller scale at the San Juan de Diós Hospital, the group hopes to collect a total of $30,000.
To help, donations can be deposited at Banco Nacional accounts 100-01-000-219671-1 (in colones) or 100-02-000-621350-0 (in dollars). For more, see www.proyectodaniel.com or call 2286-2936.
