On the occasion of World childhood cancer daywhich is celebrated worldwide on February 15 each year, Elena Santarelli returns to talk about the illness of his son Giacomo, who was diagnosed at the age of 8 (in 2017) a brain tumor. And she does so not only as a mother who has gone through one of the most difficult experiences to imagine, but also by virtue of the new role she has recently assumed as ambassador of the Umberto Veronesi Foundation, which has been involved for years with the “Gold for kids” project in concretely support research in pediatric oncology starting from that still unsatisfied need to provide tailor-made care for children and adolescents.
Let’s start from here then. Why did you decide to support the Veronesi Foundation?
«Because it represents the excellence of scientific research in Italy and has maximum credibility. It promotes science, supports the work of the best researchers and this means offering hope to those who are already ill and to those who will be. If I can, with my experience, help promote their activities, sensitize people to donate what they can, whether it is much or little, I do it willingly. In particular in favor of childhood cancer research: there is still much to be done to give children and adolescents who fall ill from cancer more chances of being cured. There are still few drugs studied and tested to treat children and young people, and even fewer for relapses».
Every year in the world over 250,000 children and adolescents are diagnosed with cancer: about 60 different subtypes of cancer affect young people. In Italy they are recorded more or less 1,400 diagnoses per year in the 0-14 age group e 800 in the teenage one, between 15 and 19 years old. The most frequent childhood neoplasms are leukemia (37.6% of cases), brain tumors (15,1%), lymphomas (13,4%), neuroblastomi (8,9%), soft tissue sarcomas (6,2%), nephroblastomas and bone tumors (4.8%). “Research has made great strides in the treatment of these pathologies and today in more than 70% of cases, but for some forms of leukemia it exceeds 90%, the disease is defeated – he recalls Paul Veronesi, president of the Foundation -. Yet, despite the progress, we have realized that children and adolescents in particular do not always receive age-appropriate care».
Because of this the «Gold for kids» project was born in 2014 with various objectives, including funding scientific research in the field of pediatric oncology; cover the operating and start-up costs of the treatment protocols for childhood cancerswhich provide the operational guidelines for taking charge and treating each patient, according to the highest and most innovative standards, thus guaranteeing the best chances of recovery (the protocols to be opened are identified by the Italian Association of Pediatric Hematology and Oncology); carry out the #fattivedite prevention campaign, aimed at high school studentsto raise awareness of prevention. This year, in particular, the Veronesi Foundation has committed itself on another front to support an experiment headed by the Bambino Gesù pediatric hospital in Rome (the «PALM» research platform), which aims to develop a new care for children with acute myeloid leukemia that resists standard therapies, who relapse and for whom, to date, there is a lack of effective solutions. From Monday 13 to Sunday 19 February it is possible to support the Umberto Veronesi Foundation to finance «PALM» with a text message from a mobile phone or a call from a landline to 45598.
Elena, what do you remember of the days when you and your husband, the former footballer Bernardo Corradi, discovered your son’s illness?
«Practically everything is an indelible passage. In our family and in my life there is a before and after November 30, 2017, the date on which we received the diagnosis of brain tumor of our son, who was then 8 years old, while Greta, his sister, was born for less than a year. Giacomo was a child like any other, healthy and serene, at a certain point he began to suffer from severe headaches and vomiting, both frequent. I felt that there was something wrong, but I didn’t understand what».
What did you do then?
“Getting to the diagnosis is the first difficulty. All parents try not to be too apprehensive, I’ve never worried much about small traumas typical of children, high fever or minimal symptoms. We must be cautious, without getting too alarmed, but we must not waste time».
The doctors say it too: it is better not to neglect the symptoms that persist and to speak to a pediatrician who can prescribe any tests. What happened when you arrived at the diagnosis?
‘The diagnosis paralyzes you, it’s inevitable. It’s always a shock. Any mother is frightened even at the very idea of having to have her child operated on for appendicitis. What can it be to hear the word cancer? Terror, anxiety and even anger. These are inevitable reactions, we all go through them, but they must be disposed of. And psychological help can help a lot. It has helped us a lot: you need support to guide you through that phase of life in which you sink in spite of yourself and to find a new way to return to a “normal” life, which brings serenity to the whole family even while go through the storm.’
“Normality” is a goal to be achieved by many cancer patients, adults and children, and their families. A very important goal that healthy people struggle to understand…
«The child must be able to live as normally as possible, it is fundamental. He has to endure pain, therapies, loneliness. It is an avalanche of suffering, added to fear, for him, for his parents, for his brothers. Whenever it is possible to do something “normal” it is oxygen, it is life, it is a dose of energy to then resume treatment, check-ups, tests, hospital. Whether it’s a snack at the bar, a trip out of town, an afternoon doing something he likes. Everything is fine. And the same goes for parents. Anyone who criticizes a mother or father because they have taken a few hours of “leisure” or relaxation (which then never takes your head off…) has no idea what she is saying. You need the happy moments as you go through hell.’
Every family and every sick child is a story in itself. How did you survive, even as a couple?
«With the help of our psychologist we have learned to manage anxiety, to live day by day, otherwise you go crazy. I only asked for it at the end of the treatment process, making a mistake: I thought I could handle everything, but in the end I collapsed. Your son has cancer. Will he live? Gonna die ? No one can answer you, the percentages cannot be the answer: each case is unique. And you live like this for years, in the company of fear: surgery, chemotherapy, radiotherapy. We have done everything, it is a long journey. There is a daily struggle against uncertainty. Sometimes babies are fine, or seem to be, and then they suddenly get worse. Even when things go well, as in Giacomo’s case, the period of checks starts. Before you can use the word “healed” it takes years. The thought of moving the family forward into a new chapter in our history saved us. Unwanted, but to write, one day after another, without thinking too much about the future or you’ll go crazy».
After a year and a half of therapies, in May 2019 you reached a great milestone: the end of the therapies. A new chapter has begun, best?
‘Definitely yes. When the follow up begins, a long way is done, the controls are gradually diluted, the more time passes and the more breaths. Even if I, after all the tension, then collapsed in the follow up. But I have, we, had many fortunes. First of all, that of not having economic problems, which is no small thing. The hospital teaches you a lot, we met and lived for months next to mothers (sometimes alone) and fathers who added to the burden of our own pain and fear the economic difficulties, the weight of travel and tortuous transfers, all the daily problems of work and a house to run… My mother moved home to help us, another great support. And then I think Giacomo’s age was fortunate: at 8 it is easier to manage a sick child, he has fewer “requests” and needs than the 13-year-old he is today, you can also give him less complex explanations. Another advantage was Greta’s age, who was only one year old, it was easier because she didn’t notice anything.
Where are you today? How do you live?
“Well, at the risk of sounding “trivial” or of being attacked, I will say it: after the tumor everything is a little better. Let’s be clear, no one wishes it and we would have done without it, but since it happened to us… we have redistributed the priorities, including what the real problems are. For the rest we take it less. Enjoy the weather more fully. But we live with great serenity, Bernardo is very good at this, more practical, he tells me: “Even crossing the street a tragedy can happen, if you enter the tunnel of anxiety you no longer live. Today we are here, we live and we try to do it well”.
Are you back to normal?
‘Yes, as much as possible. We are happy. Then if you ask me if I go to bed in the evening like before November 30, 2017, I’ll answer no. I have a big thought more than those of many other mothers dealing with 13-year-old children and I am no longer the same Elena. On Christmas Eve or December 31 evening, I celebrate, but I also think about who is in the oncology ward with her baby. But we have had a great teaching and, among the various lessons, there is also that of being grateful and fully enjoying each day».
And James, how does he live? What does he know?
“The truth. I think it’s very important that he knows exactly what’s going on. We explained everything to him in the right way: he knows what he’s had and he also knows that the tumor can come back, that’s why we carry out checks. Sometimes it happens. Also in this case the help of the psychologist was invaluable, she guided us to a “safe haven”. He’s a happy, serene kid, he’s not angry at life. He’s a funny guy, he has an easy joke. We teach him to think with a winning head, without anxieties or self-pity: he had a pretty tough hiccup, we got over it and we’re going on”.