Nicole, a coccyx tumor at 2 years old and treatment away from home

Nicole, a coccyx tumor at 2 years old and treatment away from home


When she was diagnosed with coccyx bone cancer, Nicole was very small: she was only 2 years and 6 months old. She was in Romania, in Transylvania, where her mother Emilia and her father Alexandru, with their 9-year-old sister Diana, had returned for some time after having lived in Italy for 14 years. "I realized that Nicole had something strange, something that to the touch looked like a stone protruding from the sacrum - Emilia tells us - Worried, I immediately contacted the pediatrician and it all started from there". From the resonance it turned out that it was a tumor, an already very large mass positioned in the terminal part of the spine. “The world collapsed on me, but I didn't want to waste time and, like any mother, I was willing to do anything to save my daughter. I immediately told my husband that I wanted to treat the child in Italy".

And so it was. It was July 2021 and once they arrived in Milan, the city where Emilia had lived. The operation Nicole had to undergo was complex: it lasted eight hours, followed by moments and days of great anguish that Emilia and her family managed to overcome thanks to the help of CasAmica, the voluntary organization that welcomes those who due to serious illnesses he is forced to move to other cities for treatment and surgery together with his family. In one of the four CasaAmiche in Milan, Nicole and her mother lived for almost two years with other children and parents who were in the same conditions: all welcomed through the projects presented by the association in recent days on the occasion of the meeting "The evolution of care”, promoted in collaboration with the Roche Foundation.

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Nicole's hideaway

For little Nicole, who is now four years old, CasAmica has been a real refuge, a second home where she can feel safe and surrounded by affection, especially in the darkest moments, when the tumor didn't seem to want to give her a break. After only two months from the operation, in fact, she had had a recurrence and shortly thereafter a second operation. But the situation, once again, does not improve. “The tumor persisted, becoming more and more aggressive – explains Emilia – and in February of the following year Nicole was placed on a four-cycle program of chemotherapy. Of these, we managed to make three of hers because they were too heavy for her ”. Only in June 2022 did Emilia and her family finally see a glimmer of hope, when the little girl underwent a stem cell transplant. "Since then - Emilia adds with a big sigh - the tumor values ​​​​continue to be negative".

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The importance of support away from home

It is through LILT, the Italian League for the fight against cancer, that Emilia gets to know CasAmica. “I wouldn't have known where to hit my head without the help of the CasAmica volunteers” – she says – In the structure in via Sant'Achilleo we had our beautiful bedroom, where we left so many memories. There was the kitchen where everyone prepared to eat, the garden with games for the children, the laundry room, the rooms of the other guests, the dining room and the common living room where I shared the painful experience of the disease with other parents. consoling each other. But we also experienced moments of leisure and conviviality, giving us the strength to be close to our children, putting aside that despondency that inevitably assails you when you think about everything they were experiencing. We have found in CasAmica – continues Emilia – not only a great economic help, but above all an enormous psychological support in facing all this away from home, from one's loved ones and from one's own security”. In the two years spent in the structure, where they still return every month due to periodic checks in the hospital, Emilia and Nicole met many people: Sicilian, Sardinian, Apulian, Neapolitan children, but also many foreigners, some of whom coming from Ukraine.

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To not get overwhelmed by the disease

Every day the volunteers, together with educators, entertainers and support teachers, entertain the children with music, singing, drawing, reading, playing, theatre, with pet therapy in the company of dogs and cats: all activities which help to process fears and tensions, creating a more serene atmosphere. “Nicole had grown fond of the volunteer Chiara – recalls Emilia – she made her sing, dance, laugh. Even now, every so often at home in Romania, she asks me: 'Mom, when are we going back to the children's home?' A very strong bond had been created between her and the other little guests, they supported each other holding hands when they happened to go to the hospital together for checks. In the structures you live like in a big family. “This means that the whole process of the disease can be faced better - explains Lucia Vedani, founder and president of CasAmica - The disease is a destabilizing event both for the people who are affected by it and for their loved ones: perspectives change suddenly and the sense of bewilderment can be great. It is therefore essential to offer patients not only all the medical care they need, but also the possibility of being able to have family members next to them and access to listening and assistance services. Our organization was born from the idea of ​​leaving a bigger mark: giving a home to those who slept on the streets waiting for treatment for themselves or for some hospitalized relatives”.

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CasAmica's projects

In the six houses between Milan, Rome and Lecco, located near important hospitals, over 4,000 people are welcomed every year. However, since it was founded in 1986, the association, which can be contacted using the methods indicated on the site, has hosted almost 100,000. A number that is constantly growing and that has made it necessary to build a seventh home on the outskirts of Milan capable of hosting up to 60 people a day. In addition to the activities carried out within the structures, CasAmica has also launched home interventions aimed at those experiencing the disease, the family and the communities with which they interact, for example with the school, sports associations and the workplace. Furthermore, in collaboration with the IRCCS Foundation Istituto Nazionale dei Tumori of Milan, it has activated a listening space to support people who have overcome the disease: through collaboration with various local realities, they are helped to find a new job, a new accommodation or training courses and internships.

Volunteering, the engine of everything

To move this great machine are the more than 120 volunteers of the association. They are the ones who, together with the operators, help patients and family members to experience the disease not as a moment of closure and waiting, but as a time of life made up of experiences and sharing. A solidarity commitment towards those affected by serious illnesses and forced to seek treatment away from home that CasAmica also gives the possibility to carry forward to companies and their employees, participating in playful-creative activities for children, at banquets and events organized to raise funds. “A few days ago we launched the Roche back to being done in 4 initiative: 4,000 hours of business and expertise volunteering to support the activities of 4 selected associations – explains Sara Giussani, People & Culture Pharma Head of Roche SpA – We want to available our professional skills, our energy and our time to create virtuous circles, to actively contribute to supporting our community and our territory. We are therefore very happy to be CasAmica's partner in this project, united by the same goal of wanting to take care of people".



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