At the age of 12, in his hometown, Goya, located in Corrientes, Alexis Romero (14) felt a deep tiredness and noticed, without a recognizable cause, bruises on his legs.
The symptoms alerted his motherDeborah Casco, that immediately took him to a pediatric consultation without imagining who would end up on a medical flight traveling urgently to a highly complex public health center located in the City of Buenos Aires, Garrahan Hospital.
Sitting on one of the beds in the 12 rooms of the Garrahan Comprehensive Care Center for Hemato-Oncology Patients (Caipho)where during the first days of this month he was temporarily hospitalized along with 20 other pediatric patients, Alexis tells Télam: “My life changed overnight”when remembering the moment in which in 2020 he was diagnosed acute lymphoblastic leukemiain the midst of a coronavirus pandemic.
From there, Alexis went through five blocks of high-risk chemotherapy and received a bone marrow transplant that mother and son recall– “came from Poland”which allowed him to obtain a medical discharge at the end of 2021. However, currently, the boy is going through a “relapse” that requires new hospitalizations and chemotherapy.
“In this treatment we need containment; it is ugly to be locked up, to go out and be in a hotel room, the two of us alone. We had to leave our house, which also entails expenses that continue to be incurred,” said Debora Casco. “Since we received the diagnosis, we did not return to our house until we were discharged,” says her mother, who was hospitalized with him from the first moment and unconditionally. To accompany him, his two brothers and his father also temporarily moved to the city.
“The Oncopediatrics law -approved in the middle of last year and in the process of regulation- would have served us well”mentions Casco, who had to put a formal job on hold, where they will keep his position.
“In this treatment we need containment; it is ugly to be locked up, go out and be in a small hotel room, the two of us alone. We had to leave our house, which also entails expenses that continue to be incurred. We celebrate that this law has come out, hopefully it brings improvements ” , complete.
Law No. 27,674 created a regime for the comprehensive protection of children and adolescents with cancer, which places the State as a facilitator of access to treatment from its diagnostic stage and to medicines, improvement of the quality of individual and family life, ensuring a nearby home to the place of attention, free transfers, contemplation of the rights of girls and boys, psychological accompaniment, spaces for recreation and games, and subsidies.
Alexis loves technology, she studied robotics and repairs computers. On her bedside table, in the hospital, she has her cell phone handy with which she entertains herself while waiting. When she recovers, she reveals that the first thing she’s going to do is see her friends again. She misses them, she emphasizes her. However, she affirms with a peaceful smile that the Garrahan “It’s like my other house.”
Restarting a treatment caused him “anger”but immediately mentioning it adds which mantra: “I know I’m going to make it, the only limit we have is ourselves”. Such a will even drives her mother, who admits: “Alexis raised me all this time.”
“I have tranquility, peace, I know what it is, it doesn’t bother me to be here, they treat me like a king,” assesses the young man while touching his dark-haired jopo with light streaks.
“Understanding what this was like, thinking about God calmed me down, I always saw his hand helping me, in each therapy he used to talk to me. He told me ‘show that you are my son’ and I would go and demonstrate with a smile at each chemo,” he concludes. with a broken voice and her black eyes moistened.
Las leukemias constitute the oncological disease more common in boys and girls followed by central nervous system tumors and lymphomas, according to the Argentine Hospital Oncopediatric Registry (ROHA) of patients under 19 years of age with a new cancer diagnosis that works under the orbit of the National Cancer Institute (INC) of the Ministry of Health.
However, cancer in childhood and adolescence are a group of diseases classified as “rare”. In Argentina, there are about 1,300 new cases a year, he explains to Télam Pedro Zubizarreta, the chief physician of the Garrahan Hemato-Oncology service. Care for these pediatric diseases is performed in 80% of cases in public health centers. And half are treated at this hospital, adds the specialist.
Half of Garrahan’s patients come from the province of Buenos Aires.
Between 2000 and 2019, 27,016 cases of cancer were reported in children under 15 years of age and 4,099 between 15 and 19 years of age, according to ROHA. 48% of children with oncological pathology migrate at some point during their treatment to more complex care centers located in a different province from the one of origin.
To stay, families look for individual solutions, help in the Provincial Houses that have places of accommodation or temporary solutions in Casa Garrahan. Al Garrahan admits about 520 new pediatric patients per year with oncological diseases, but in reality the volume of patients is higher because “the majority are cured” and sometimes “some relapse” and “all survivors need care and follow-up”, explains the head of Hemato Oncology.
“There are longer or shorter chemo blocks and more intense or aggressive ones,” The graduate in Nursing Santiago Fritz (38) explains to Télam, who is in charge, together with other nurses, of the care of patients in the event of possible complications in the integrity of the skin, feeding and vomiting.
“Many times they do not achieve the expected weight and they are given more milk or solutions that can be passed through a tube so that they are stronger for treatment,” he concludes.
Meanwhile, in one of the corridors of the Caipho that has its walls illustrated with children’s drawings, Zoethree years old, walked standing on the wheels of the IV stand wearing a turban with hearts on her head, her chinstrap, a pink T-shirt and colorful leggings next to her mother, and she advanced greeting nurses with charisma.
“Good morning, can I sing you a song?”prudent consultation the musician Julio Calvowho has been working at the hospital for 13 years bringing a moment of play, relaxation and joy to patients with a guitar and a tambourine, among other instruments.
Peeking through the half-open door of the room where Zoe and her partner are Martina1 year and 9 months old, without hesitation, the girls’ mothers invite him to enter that intimate space that is as warm as it is aseptic. Music, especially there, caresses the soul of adults and children.
“Lola the cow” is the song that Zoe enthusiastically requests and that Calvo renames “Claudia” until the girl, very attentive, corrects him: “No, Lola.”
Like Alexis’s mom, Zoe’s, Laura Zarate (22), a native of Misiones and resident in the Buenos Aires city of Pilar, permanently accompanies the girl. In August 2022, she noticed that Zoe had back pain, bruises on her legs, and trouble walking, and she herself decided to take her to Garrahan, where she was diagnosed with acute lymphoblastic leukemia.
The Oncopediatrics Law, in the process of regulation
Oncopediatrics Law No. 27,674 created a “comprehensive protection regime” for children and adolescents with cancer with the aim of reducing morbidity and mortality and guaranteeing their rights, and is in the process of regulation.
The norm, whose application authority is the National Cancer Institute under the Ministry of Health, proposed an interdisciplinary approach with the patient and their family at the center of care, with articulated work in the different jurisdictions and with all the actors and State sectors: Health, Social Development, Labor, Education, and Transportation, among others.
“They told me to leave my job for a while and when she recovers I could return, luckily they will keep my job,” adds the young woman who works in catering services.
After two and a half months hospitalized in the Garrahan, and having received a first block of six chemos, the girl “is progressing well and her mood improved,” says Zárate, and they returned to the Caipho for another chemo.
“Words are not enough to thank,” Laura concludes as she watches the active girl play with her tablet and said that she also likes to play ball.
The work in the hospital is “collective and as a team”, Zubizarreta points out and concludes that “the survivors are a population that continues and will continue to grow”.
• Jazmín Guzmán, mother of Isaías
“The hospital is wonderful, I had gone through many hospitals that did not give you answers and even treated you badly. Here everything was very detailed, it was treated as an emergency, everything was very fast,” says the mother of the patient Isaías Franco, 3 years and 10 months old, Jazmín Guzmán (23) diagnosed in September 2022 with acute lymphoblastic leukemia.
Isaías cannot use public transport or go to the garden due to the risk of infection.
“Isaías went very badly and now he runs, jumps, sings, fights for medication, but he had a radical change, we are entering the third stage of treatment, he is receiving four-day chemo hospitalization. Everything is ten,” he highlights. Guzmán, who lives in the Buenos Aires town of Laferrere and recommends to other people who are going through a similar situation “a lot of patience and calm” because “it is a long road and they need to see us well to be well.”
• Susana Ramirez, Naomi’s mother
Naomi Pereyra (15), born in the Entre Ríos city of Paraná, was diagnosed with anaplastic large cell lymphoma and her mother Susana Ramirez (44) assures Télam in the hospitalization sector: “I didn’t think twice, I came.”
“The first thing we were afraid – he adds -, but the service here is very good, nothing to do with the province that takes time to deliver the studies, here we are amazed because they attended us quickly, in three days they did all the studies, All the specialists saw her, now she is doing five-day chemo, there are six blocks and she is already on her fourth. We are doing well.”
“I had to stop working as a domestic worker to accompany her, but the lady I work for gives me money a week, so with that and raffles that my daughter who lives here does, and the pension for being the mother of seven children, we support ourselves. “says the woman.
Regarding the accommodation, the mother pointed out that they were given one but “it does not cover the conditions that she has to have” because -she explains- in these pathologies “hygiene is important and there are places that even have shared bathrooms, they cannot have that”.
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