Embracing life after childhood cancer: the story of Aina and Marcel

BarcelonaAina's life, and that of her family, changed suddenly when she was just six years old due to a brain tumor. Although benign, it affected vital functions such as her vision, and three surgeries and several sessions of radiotherapy were necessary to remove it. Eight years later, she still has to undergo routine checkups at the hospital, has frequent medical tests, and is learning to live with the aftereffects she will carry for the rest of her life. Because of the tumor, she is blind and suffers from several chronic illnesses that affect her daily life and independence. At school, classes and educational materials have been adapted so that she can keep up with her classmates. She has a support teacher who helps her in the classroom, and at home, everyone adjusts to her needs to make things easier for her. Her mother, Anna, explains that, despite the aftereffects of the tumor, they do everything they can to support her in this new life, which they want to be as normal as possible.

"I just want her to be well and very happy," she explains emotionally to AHORA. But her daughter's future worries her and creates uncertainty, especially when she reaches adulthood. She is now one of the patients at the SEGUIM Unit of Sant Joan de Déu Hospital, which supports children after cancer, once the disease is no longer active, until they turn 18. "Whenever we have a problem or a question, we contact them. We have a designated professional who helps us and responds very quickly," says Anna. This unit addresses their physical health, but also their emotional well-being, since "many of these children experience anxiety, depression, and significant fears about working after treatment," says the head of the service, Mari Molero. Last year, they treated approximately 700 children who had overcome cancer and now must rebuild their lives.

Although Aina is now 14 years old and finished cancer treatment eight years ago, her mother still experiences constant insecurities and suffering. "You never truly accept it, but you live with it and survive for her," she says firmly. The emotional impact of childhood cancer is the most common consequence for patients and their families. "They've had their lives disrupted for a long time and find it difficult to return to normal, despite wanting to," explains Molero, who emphasizes that they also work on these aspects with families and schools. Therefore, the unit has psychologists, neuropsychologists, and social workers to address this distress. Children arrive at the unit a year after completing treatment and, depending on long-term risks, will stay for a longer or shorter period. The minimum stay is five years, but some patients will be monitored until they reach adulthood.

Learning to Live Together

Like Aina, most children who have suffered from cancer experience long-term effects. Molero says these effects impact two out of every three children, and of this group, a third will have serious consequences. "Their lives are no longer the same; they have to learn to live with many new things resulting from the disease," explains the head of the unit, which also includes pediatricians, oncologists, nutritionists, and physical trainers to treat these effects and try to minimize them. Aina, for example, has diabetes insipidus, a rare disorder that disrupts the body's fluid balance. She can become dehydrated or retain excess fluid, "and it's very difficult to manage," her mother laments. She also has scoliosis and endocrine disorders that affect her daily life. "We can't make long-term plans. If she's doing well today, then great, but we're taking it day by day."

Another important element they work on, especially with patients like Aina who has so many aftereffects, is the transition to adult care once they turn eighteen and have to leave San Juan de Dios. "It's very important that they take responsibility for their care, because once they leave, no one will chase them down to reschedule a visit," says Molero. They give them all the information they need to detect changes in their health early and act accordingly. "If you're a woman and you've had chest radiotherapy, you should know that you have a higher risk of developing breast cancer. Or if you've lost your hearing due to the treatment, you should be able to tell the specialist when you go," the expert explains.

Play again

Marcel is 14 years old, and although he has hardly any lasting effects, he says his life hasn't been the same since he suffered from Hodgkin's lymphoma when he was nine. He goes to the San Juan de Dios unit once every six months, where they run all kinds of tests to make sure everything is alright, but he says he has already overcome the fear he felt when he was diagnosed with cancer. His mother, Carmen, remembers the suffering and anxiety she felt when the doctors told her that Marcel was sick. "At first, you don't believe it. I thought Marcel would never play again, that he wouldn't be the boy he was then; we had a very hard time." They live in Sant Antoni de Vilamajor, and Marcel explains that, once he finished chemotherapy and radiotherapy, he had to wear a mask, gloves, and a cap; he couldn't touch the ground or the river water. Now, five years later, he escapes whenever he can to go hiking in the mountains, which he loves, plays soccer on the village team with his friends, and plays the drums. Molero affirms that this is the unit's ultimate goal: although patients' lives will never be the same, they want to be able to rebuild them with the greatest possible guarantees and achieve maximum autonomy. Marcel, for example, goes to school happily; he especially likes biology, mathematics, and physical education, and says that when he grows up he wants to be a doctor and, if possible, work at San Juan de Dios.