Iván Carabaño Aguado, associate professor of Pediatrics at the Complutense University of Madrid, says that the word “cancer” shakes in consultation and leaves families blocked. “When they hear this word, families tend not to hear anything else.” because of that shock Initially, he says that his years of experience have taught him that families only need “a firm footing to continue” and the best possible accompaniment at that moment when everything has fallen apart. On International Childhood Cancer Day, which is celebrated this Wednesday, February 15, families, associations and professionals remember that in addition to this support, it would help to recognize the 33% disability of the child from the moment the diagnosis is made.
Every year in Spain there are 1,500 cases of malignant tumors in children, according to the Federation of Parents of Children with Cancer. Of these, 1,100 in minors between 0 and 14 years of age and about 400 in adolescents between 14 and 18 years of age. Paula, 12, was diagnosed in 2018 with a brain tumor. Her mother, Maria [las familias que se presentan en este artículo prefieren no dar sus apellidos para proteger su intimidad], says that she was alone when the pediatrician gave her the news and that she felt devastated, because she knew the path that they had to start to travel. Five years earlier, she herself had been diagnosed with a malignant breast tumor, something that drastically changed her family dynamics: “Cancer is synonymous with radical change, breaking projects, dreams, plans. Your day to day will never be the same. The disease changes everything and brings with it a story with shades of all colors that will go through the entire family ”.
After the diagnosis, Paula was admitted to the Niño Jesús hospital in Madrid and what for her was an adventure for this mother and her husband was a race against time, as they had to reorganize emotionally and logistically. Due to the characteristics of the tumor, the girl had to undergo two surgeries and several chemotherapy and radiotherapy sessions that left her with multiple sequelae encompassed in what is known as Acquired Brain Injury (ACD). “Paula had to relearn to speak, see, walk, eat, sit, write and needed during 18 months of intense multidisciplinary daily treatment in the ACD Unit of the Niño Jesús hospital. She had physiotherapy, speech therapy, occupational therapy, neuropsychology and therapeutic pedagogy sessions that allowed her to follow her school rhythm adapted to her needs at that time, ”explains María.
Monica is the mother of Marcos, a survivor of Ewing’s sarcoma, a rare type of cancer that occurs in the bones or the soft tissue around the bones. She received the diagnosis at the age of five, in 2014, in a moment of simple happiness: “Marcos was very happy. He had a baby brother, a school he loved, a great family, lots of friends, and adoring parents. He had always been a very strong boy; He was in good health, in great physical condition, he loved to play soccer and race… When one day he started walking down the street and started complaining of pain in his left leg, and that’s where it all started,” Mónica recalls.
The diagnosis came after a pilgrimage of more than three months of visits to the pediatrician and emergency room and receiving wrong diagnoses. Ewing’s sarcoma was an aggressive and complicated bone tumor that was destroying Marcos’ left femur. From the diagnosis, cancer treatment began with a plan consisting of six cycles of chemotherapy, a complex surgery and eight more cycles of chemotherapy to finish preventing the scattered cells of the tumor from metastasizing or recurring. Like María, Mónica also says that the disease changed the entire family life abruptly and definitively. “Our logistics and our routines were blown up. The disease also took away the tranquility and confidence of thinking about a future, good or bad, for our children and replaced it with fear and uncertainty”.
María Belén Calero Díaz-Guerra, social worker at the Pediatric Oncology Association of Madrid (ASION)explains that when an oncological disease is diagnosed in childhood within the family environment, the entire system is modified, generating not only a series of changes at a medical level, but also at a psychological and social level in each of its members: “At first, and After receiving the diagnosis of the disease, families must assimilate, as far as possible, what a cancer diagnosis will mean for the child or adolescent, but also in the family environment. Subsequently, most of them begin to get overwhelmed in regards to their employment situation, which can be considered one of the first red tape they have to go through”.
In February 2017, Pedro Quevedo, deputy for new canaries, got the Health Commission of the Congress of Deputies to approve a Project No Law (PNL) that unanimously recognized a 33% disability for minors with cancer from 0 to 14 years of age, just at the time that produces the diagnosis. In this way, it was intended to change a Royal Decree 1971/1999, of December 23, specifically its chapter 11, dedicated to the procedure for the recognition, declaration and qualification of the degree of disability caused by neoplasms —malignant or benign tumors— and in the that the situation of boys and girls with these pathologies was not specified. After this approval, all the weight fell on the Government of the nation, since the PNL only urges. Although some communities have implemented this measure through a PNL, for example La Rioja, Castilla-La Mancha, the Canary Islands and Aragon, the situation in 2023 of these cases is still not included in the current national regulations.
Since then, different childhood cancer associations help families in Spain so that this bureaucratic and functional part is more sustained. However, from the Spanish Federation of Parents of Children with Cancer (FEPNC) They demand that this disability be recognized. The organization insists on the need to recognize it from the beginning because “limitations appear that significantly affect the performance of daily life activities of this group and their families.” And this recognition would make life much easier for families. “This allows them to access a series of aids and services, such as economic benefits, rehabilitation treatments, means of adaptation at home, educational support or transportation aid, which are essential in many cases,” says Juan Antonio Roca, president of the FEPNC.
Economic conditions mark the process
María spent four months living in the hospital. At that time she was unemployed and her husband had to reduce her work by 50% to be able to take care of her eldest son. In her circumstances, they were able to access a subsidy for the care of minors with serious illness, but since her husband was self-employed, she could not request any additional benefit that would lighten the situation. “Being able to access the degree of disability of 33% after a cancer diagnosis should be an immediate and merely administrative procedure, since it would have made everything easier for us,” laments María. That would have allowed them to adapt her house to Paula’s needs from the beginning, putting bars in the hallway or renovating the bathroom. They would also have been able to buy a wheelchair, have had access to a free pharmacy, apply for a large family title and many more benefits that can take more than eight months to achieve after diagnosis.
In the case of Marcos, although he finished his treatment in January 2015, he continues to be closely monitored by different specialists. Mónica says that cancer does not end when the treatment ends, but that in the case of tumors related to growth, which appear in childhood and adolescence, this is even more real. For this reason, she believes that the recognition of the disability from the first moment is essential. “Marcos needs a prosthesis, a wheelchair, an orthosis [dispositivo externo, que se coloca para modificar aspectos funcionales del sistema locomotor], insoles… In addition, from the first moment you need a specific and regular physiotherapy treatment, which not only helps you with your reconstructed femur but with all the disorders that a surgery as complex as yours has left, and psychological help to work on the consequences that an experience like this has caused him to suffer in such an early childhood. The expense is huge,” she says.
For Iván Carabaño, it is important to insist that these children and adolescents need additional educational curricular support, specific treatments, psychological support… And since their parents often interrupt their work dynamics, they require the Administration to have sufficient help resources. As Calero Díaz-Guerra points out, economic conditions influence how the family will experience the disease and its treatment: “If for normalized families and with stable economic conditions, the increase in expenses after the diagnosis of their child affects their family economy , even affecting it significantly and generating another reason for stress, for those who did not previously have this condition of stability, their entire economy, their means of survival and the little stability they had, are unbalanced, especially when they are jobs precarious or considered submerged economy”. According to ASION’s social worker, many families are forced to leave their jobs to be able to care permanently, losing their only source of income: “It is essential that families have support to be able to cover basic needs and the expenses that they derive from the disease itself so that they can focus solely on the disease.”
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