For Giulia there is no before and after. For her, the diagnosis of neuroblastoma has reached five months and today, at the age of 40, she has no memories of that phase of her life. A path that of Giulia that bodes well because she ended her battle with cancer quite a few years ago, thus entering the category of the so-called ‘long survivors’, a somewhat cold classification but which really makes the idea of how today, thanks to advances in medicine, it is also possible for children affected by neuroblastoma to become adults and live fully.
First signs of illness
Giulia’s mother had had a very peaceful pregnancy and she was born to term with natural birth. The first few months were quite in line with the normal development of any newborn, until she became inappetent, stopped growing, and finally stopped moving her legs. “I spent my time in the throes of inconsolable crying that exhausted me and my parents and the pediatrician understood quickly enough that something was happening”, says Giulia Panizza from Genoa. Yet, in that terrible moment there was still an opening to cling to: she was very small and under one year of age there was some hope of survival for which one could think of fighting. And then she was born in Genoa and could therefore count on one of the best Italian pediatric hospitals: the Giannina Gaslini Institute.
Neuroblastoma, it can be treated with immunotherapy
Scars that tell of a victory
Not only for Giulia, but in general for all young patients, early diagnosis is truly life-saving. Unfortunately, it is not easy to get there because the symptoms are very common and can be confused with a common flu. Giulia’s neuroblastoma was located in the site of the retroperitoneal ganglia, with infiltration in the medullary canal. The hypotonia / hyposthenia of the lower limbs made it necessary to proceed first with a back-lumbar laminectomy (i.e. a surgical operation for decompression of the spinal cord and / or spinal nerves), then, a few months later, an abdominal laparatomy and then finally chemotherapy. “The two scars that were determined by these interventions – says Giulia – have grown with me, becoming very evident: for 40 years they have been telling me about the great battle that was fought and the strength of life that did not give up, even in a historical period in which the hopes of survival were very, very low “.
University of Bologna, discovered a brake on the most common cancer among children
The long road to rehabilitation
In short, Giulia made it even if the path was tiring. “The back-lumbar laminectomy surgery – recalls the young woman – has created numerous difficulties for me at the motor level: for the recovery of the lower limbs I had to do a lot of physiotherapy and I still have a lot of difficulty even in carrying out simple daily gestures, such as, for example, maintaining an upright position for a long time or if I have to bear weights, such as simply carrying shopping bags ”. But the rehabilitation and therapeutic approaches of 40 years ago are very different from those of today. “Also to the parents of the children currently being treated who sometimes asked me how my life was then – continues Giulia – I invite you not to make comparisons because the expectations of a ‘full’ life for their little ones have a very high probability of realization. greater than it was for me. In this lies the importance of continuous research, not only to identify ever less invasive and increasingly personalized treatment approaches, but also for the so-called ‘long-term outcomes’ that can sometimes be related to them “.
Child-friendly precision oncology
by LETIZIA GABAGLIO
From bullying to personal revenge
Giulia tells a story that is now starting to have a long way to go and this is undoubtedly a good testimony, but of course there were also very difficult moments: “When I understood the meaning of repeated hospital checks and especially the conditions of the little patients I met and I was still a child who did not go to school ”, remembers Giulia. “Finding myself more and more alone in a world divided between those who did not know the neuroblastoma I had had since it was a rare tumor and those who had known it and was no longer there; episodes that today we will define of bullying in adolescence for my frailty; the humiliating process for the recognition of disability; the need to keep pace in studies and in the workplace with times and ways that did not take into consideration my tiredness, my difficulty “. Yet, none of this has ever really stopped Giulia from completing the studies she wanted, she was a university tutor, a research fellow in industrial archeology, a volunteer in the national civil service and starting all over again 11 years ago when her adventure in the company began. , after being hired as a simple secretary she qualified in Human Resources management and training, occupational safety and personal data protection. In short, Giulia has the temperament of a real lioness.
A love ‘faithful over the centuries’
To complete the puzzle comes true love and then marriage. How did things go? “Living the experience of an oncological disease, especially in the pediatric age, is something that will accompany you forever: at every medical visit it will return to the anamnesis, as well as it will happen to stumble upon that experience in the workplace, sports, social and even insurance contexts . People are often frightened by all this and also for me, first of all, finding a life partner was not so easy. However, it was a very fruitful search since my husband Alessandro is a marshal of the Carabinieri and we all know their motto very well (faithful over the centuries…!) ”.
A concentrate of energy
But perhaps the most beautiful and unexpected gift for Giulia was that of motherhood: “We didn’t know if we could ever have children when we got married, but we decided to believe in our love. On our first anniversary, I was already waiting for Riccardo, who is now 4 and a half years old and is a concentrate of pure energy ”, he radiates. “Motherhood was the most all-encompassing experience that forced me, once again, to find new resources, new energy, new creativity to face and manage everything in the best possible way, even with my limitations”. Ten days after giving birth, in fact, Giulia lost the use of both arms due to a very serious bilateral carpal tunnel syndrome which still persists and for which she should undergo a double operation. “I was expecting that it would be a little more difficult for me to get pregnant, deliver and manage a newborn and so I had already decided to invest in mentoring from a pediatric nurse. She should have stayed with me for 10 days and instead she stayed 5 months, nevertheless teaching me a lot of things that are still really useful in caring for my child today ”.
The importance of scientific research
A beautiful story that invites optimism or at least hope. What do you want to say to the parents of children affected by this pediatric cancer? “If it was possible for me, 40 years ago, not only to survive, but also to be able to make a journey full of so much normality, the possibilities for their children today are certainly greater because research has really done and continues to take giant steps towards a 360 ° approach to care, which also takes more and more account of the psychological and social aspects that such an experience can bring with it. The Italian Association for the fight against Neruoblastoma, founded in 1993, when my oncological path was now over, has been raising funds for almost 30 years to support research against this disease. Every day doctors, health personnel, researchers work to ensure that the future of these children is increasingly a concrete prospect “.
The ‘Survivor’s Passport’
Three months ago Giulia was given the updated version of her ‘Survivor’s Passport’, an international follow-up project. It is a document recognized at European level in which, in addition to reporting the summary of the interventions and treatments carried out, there are also indications on the checks to be carried out to monitor any ‘long-term effects’ determined by the treatments undergone. subjected. At what point are you: how many checks do you have to do? “In addition to the motor aspect for which I have to undergo continuous cycles of physiotherapy – replies the young woman – I need to keep the cardio-pulmonary system under control and try as much as possible to stick to a healthy lifestyle, both in terms of nutrition, and attention not to create conditions of excessive stress “.
More flexibility at work
Who better than Giulia can understand what today are the most urgent needs for patients with neuroblastoma? What needs to be done? “The illness of a child – he underlines – turns into the illness of the whole family and I believe that it is preliminarily necessary to intervene on this social aspect, allowing the parents of the young patients to have access to forms of flexibility such as, for example, the work of remote that by now we have all learned to know and manage due to the pandemic “. But investing in research remains the focus of the matter because there is still a lot to do, for example, in early diagnosis. “For this reason I feel once again to remember what has been achieved in recent years by the Neuroblastoma Association, of which my family and I are also supporters”.
Support for parenting
And then there is the whole issue of parenting support for former pediatric cancer patients, which should be broader than what is currently offered by social assistance structures. “In a case like mine, for example, the disability that is recognized to me does not allow me to have accompanying formulas and does not take into account the fact that being a care giver of oneself and of a minor can lead to serious situations difficulties that could be easily overcome, for example by providing services and / or financial support at least for the first years of the children’s life “, points out the woman who, based on her experience, has put in place, together with a team of professionals in the socio-health field, a project in support of motherhood and childhood which, however, despite having excellent evaluations ‘on paper’ by the Ligurian institutions to which it was presented, has not yet found the right way for its realization.
Rights denied
Another crucial issue is that of the many denied rights. “It is not possible – Giulia complains – that due to my oncological history, the Italian legislation does not consider me a suitable person for adoption or that my bank does not allow me to take out life insurance for the mortgage on the purchase of the house and then there are no other forms of protection or guarantee besides the cauldron of the so-called protected categories. All together we can do a lot for those who are living this terrible experience today, above all to give parents and young patients the concrete hope of a long and full life, as mine was ”.
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