Eight cycles of chemotherapy in 90 days; a month of hospitalization with high-dose chemotherapy and stem cell transplant; a surgical operation; 15 radiotherapy sessions; six months of immunotherapy; 30 anaesthesia; two bone scans; four MRIs; six CT scans and six marrow biopsies. This is what Vittoria had to endure in 16 months, when she was struck by neuroblastoma at just 7 months old. Last week she turned 5 and – despite the signs that the disease has left on her body – she runs happily towards life with an unstoppable strength and smile. On the occasion of World Pediatric Cancer Day which is celebrated on February 15, the father Marco Romani, 39 years old, an engineer from Ferrara, agreed to tell Oncoline about the complex and painful journey of their family.
A chance discovery in the emergency room
The terrible news of the tumor arrived in 2019 and was, as often happens, completely random: “Vittoria had contracted a virus and for about 15 days she had been showing the classic flu symptoms with vomiting, fever and general malaise”, says her father. “We went to the emergency room for two weekends in a row because it seemed strange to us that it lasted so long and they sent us home, but the fever continued to be high so after a week we returned again to the emergency room in Ferrara and as luck would have it that there was a pediatric oncologist who noticed an effusion of the spleen and liver and asked to do an ultrasound.”
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The transfer to Genoa
After a month, the diagnosis of neuroblastoma arrived and unfortunately the mass was already 6 centimeters in diameter. “The doctor who followed us – continues Marco – immediately understood what it was, but the type of neuroblastoma had to be analyzed and after the analyzes the news arrived that it was the most malignant. They told us that if we wanted to have hope we would have to go to Genoa.” Two days later Marco and Caterina left for the Ligurian city where they remained for 16 months during which – in addition to little Vittoria’s illness – they had to deal with Covid. “We had to leave everything: Caterina was able to take advantage of law 104, while I carry out a profession that allows me to work in any part of Italy and then paradoxically Covid also helped us by slowing down work and allowing smartworking”.
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What is neuroblastoma
Neuroblastoma is the most common extra-cranial solid tumor in pediatric age and is the leading cause of death due to disease in preschool age. According to data from the Italian Association for the Fight against Neuroblastoma, in the case of localized (non-metastatic) inoperable tumors, survival ten years after diagnosis is approximately 90%, while in forms of metastatic neuroblastoma, it can reach approximately 45%. “These are encouraging data that stimulate us to move forward on this path”, declares Massimo Conte, vice-president of the Association, pediatrician at the complex pediatric oncology operational unit of the “Giannina Gaslini” institute in Genoa and coordinator of the Neuroblastoma working group for Aieop (Italian Association of Pediatric Hematology Oncology). Another piece of data concerns high-risk recurrent neuroblastomas: “For these relapses we are stuck because only 10% are recoverable”, states Massimo Conte according to an analysis carried out on 1,432 cases of the Italian Neuroblastoma Registry for the period between 2000 and 2023. “However, things are changing very quickly and we hope to improve these data too”.
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Poised between desperation and trust
The little girl’s neuroblastoma immediately became stage four with metastases to the spinal cord. The situation was truly critical: “They told us that the survival rate for cases like this was 30% but also that the fact that Vittoria was less than a year old was lucky because you are more likely to overcome the disease, it being understood that every child it has its own history,” recalls Marco. The doctors presented the parents with the ‘battle plan’ which lasted 16 months with 8 cycles of chemotherapy, a bone marrow transplant, surgery to remove the tumor mass which in the meantime had shrunk to 2 and a half centimeters and then the radiotherapy and immunotherapy.
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In the midst of Covid and the fear of infections
“The marrow transplant – underlines father Marco – was perhaps the heaviest phase because Vittoria was unable to feed herself for a month, but the immunotherapy was also no walk in the park also because due to Covid the risk of infection in the her condition was very high, but also thanks to the fact that mother Caterina is a resuscitation nurse and knows well the precautions to take Vittoria never got infected despite being immunosuppressed”.
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The return home
Marco, Caterina and Vittoria returned home to Ferrara in 2021 and the little girl was finally out of danger and ‘off therapy’. The family could start living again and the little girl could finally play like all the children her age. But she had to make up for the 16 months spent in the hospital bubble that deprived her of her childhood: “The prolonged hospitalization – underlines Marco – also caused some problems with cognitive delay. For this reason Vittoria underwent physiotherapy and logotherapy, unfortunately only partially guaranteed by the National Health System: most of the services were paid. It is important to do more to strengthen public assistance because not all families have the economic means to afford to pay for these services.”
Smiles, runs and scars
How is Vittoria now? Marco sends me some photos and you can see that she is a happy little girl. She has very long brown hair (because she wants it down to her bum, says her dad), very smiley, cheerful, empathetic and cuddly. “The path that she had to follow – says Marco – made her very adaptable, wherever you put her she stays, she likes listening to readings and she likes running and jumping, drawing. She likes the sea. She only has some language problems with the pronunciation of some vowels, but we follow her a lot and she does everything the other children do: she attends nursery school and also does creative dance and swimming”, says Marco. Vittoria doesn’t know what happened to her but she has a lot of scars on her belly from the surgery she underwent and she asks herself a few questions: “Then we periodically go to Genoa to do checks and she’s starting to ask for something, but little by little we answer and the he is coping well thanks also to the psychological support.”
Worry about the future
There remains concern for the future also because at the last check-up some growths were found on the liver: “The doctors reassure us and think that they are benign because they have also been found in other children who have had the transplant. They have to do a follow-up MRI, but the doctors are quite calm even though we know that all the therapies he has undergone can cause long-term problems. I am saddened by the idea that she, who is already very maternal, loves younger children and plays mother, most likely due to the therapies she will never be able to become a mother. But in the meantime we enjoy the moment and wait to leave this painful experience behind us.”
Commitment to the Association
Even though the emergency is now over, this family has experienced first-hand how precious scientific research is and has not forgotten it. For this reason Marco has chosen to help the research promoted by the Italian Association for the Fight against Neuroblastoma. “Support for scientific research is important both to increase the chances of survival of girls and boys under treatment, and for the ‘afterwards’, for those who have overcome cancer in the long term. The research must also serve to find less invasive therapies to avoid any long-term problems”, says Marco Romani, thinking precisely of the monitoring to which his daughter is subjected for some alleged side effects on the liver that need to be investigated further.
The lines of research supported
Above all, the focus is on new research frontiers also through solidarity actions from the world of associations in support of projects based on innovative treatments. An example is the Easter campaign ‘I’m looking for a friendly egg’ of the Italian Association for the Fight against Neuroblastoma to promote particular areas of scientific interest such as immunotherapy or projects focused on the study of genetic alterations linked to the development of tumors and the identification of ‘intelligent’ drugs capable of intervening where needed, on diseased cells, sparing healthy ones as much as possible. All research branches indicated as priorities in the 2024-2028 strategic plan. “In the thirty-year history of the association, we have provided around thirty million euros,” says the president of the Italian Association for the Fight against Neuroblastoma, Sara Costa. “There are many resources – he continues – because they arrived with private donations, thanks to the loyalty of our supporters, with a generosity that is reaching pre-Covid levels after the slowdown linked to the pandemic”. A commitment that the association carries out in close collaboration with its scientific branch, the Italian Foundation for the Fight against Neuroblastoma, responsible for selecting and financing approved scientific studies: an example is the new call launched by the body for the promotion of innovative projects and which can be consulted on www.neuroblastoma.org.
The Easter campaign
The solidarity eggs of the “Child with the Funnel”, the symbol of the association, contribute with the Easter campaign to making the commitment of the association and the foundation possible. The eggs will be in the square during the festive period in front of the church of San Martino, a hamlet of Ferrara, thanks to the commitment of Marco Romani and the parish group. To donate the eggs suggested by the Italian Association for the Fight against Neuroblastoma and support scientific research, just go to the website www.neuroblastoma.org, Anb Store section under “I’m looking for a friendly Easter egg 2024”. Alternatively, you can call 010-9868319 or 010-9868320, or you can write to the email address [email protected].