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“Christmas Balls”: a Christmas carol by the adolescent cancer patients of the Milan Youth Project

“Christmas Balls”: a Christmas carol by the adolescent cancer patients of the Milan Youth Project

Tumori 2017; 103(2): e9 - e14

Article Type: SHORT COMMUNICATION

DOI:10.5301/tj.5000597

Authors

Andrea Ferrari, Stefano Signoroni, Matteo Silva, Paola Gaggiotti, Laura Veneroni, Chiara Magni, Michela Casanova, Stefano Chiaravalli, Mirko Capelletti, Pietro Lapidari, Carlo Alfredo Clerici, Maura Massimino

Abstract

The Youth Project is a program developed at the Pediatric Oncology Unit at the Istituto Nazionale Tumori in Milan, dedicated to adolescents and young adults with cancer. Among its various goals, the Youth Project organizes structured creative activities with the support of professionals, with the objective of offering young people a new way to express their hopes and fears. This article describes a project centered around music: patients created a Christmas carol with the help of musicians and authors. The adolescents explained with their own words the meaning of the lyrics, telling the story of a Christmas spent in a cancer hospital ward.

Article History

Disclosures

Financial support: No financial support was received for this submission.
Conflict of interest: None of the authors has conflict of interest with this submission.

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Introduction

For young people, whatever their religious beliefs, Christmas is not just a celebration but rather a state of mind that has to do with the spirit of life. It is a time of year associated with something magical and delightful, even in adolescents who are too old to believe in Santa Claus.

This is the story of a Christmas spent in a cancer hospital ward, told in a song written and recorded by adolescent patients as part of the Youth Project run at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan. This group of adolescents with cancer use their Christmas carol to speak about a Christmas charged with anxiety due to their cancer diagnosis but experienced with all the strength and determination of young people who just want to have a normal Christmas – despite their condition – and to be able to enjoy it with a cheerful spirit and in good company.

The Youth Project

Singing is one of several schemes involved in the Youth Project at the Istituto Nazionale Tumori in Milan. The Youth Project is a program first established at the Pediatric Oncology Unit in 2011 that is dedicated to adolescents (patients from 15 to 19 years old) and to young adults (up to 25 or 29 years old) with pediatric-type tumors (1, 2). The model of care of the Youth Project has 2 main aims: (1) to optimize clinical aspects such as patients’ access to treatment protocols, psychological and social support, and fertility-preserving measures; and (2) to implement a support strategy that includes providing dedicated spaces and schemes to help patients preserve a sense of normality in their lives, including friends, sports, music, and Internet access, because their disease tends to deprive them of this sense of normality at a delicate time of development (3, 4). Organizing structured creative activities with the support of professionals offers these young people a new way to communicate and express their hopes and fears. In the psycho-oncologic sphere, these projects also help caregivers to come closer to the personal worlds of their adolescent patients, and to make better contact with their subjective perspectives. At the same time, the activities offer patients a novel means of expression, helping them to process their emotions, which is a fundamental part of a global approach to young people who are ill (5).

The Youth Project activities are supported financially by the Bianca Garavaglia Association and implemented with the help of various professionals working alongside the team at the Pediatric Oncology Unit, which includes physicians, psychologists, a youth worker, and a creative arts director. Numerous projects have been completed over the years, including a fashion show (6), a song called “Clouds of Oxygen” (7), a graphic novel writing class, and a photography project called “The Search for Happiness.”

The making of “Christmas Balls”

The latest project undertaken by our adolescent patients revolved around music (one of the art forms closest to the adolescents’ hearts). The idea was for them to create their own Christmas carol. The title they chose—“Christmas Balls (Smile! It’s Christmas Day)”—gives an immediate idea of their light-hearted approach, but also of the irreverent and self-deprecating style typically adopted by the adolescents involved in our Youth Project. As Matteo Davide (being treated for a medulloblastoma) explained: “The carol was called ‘Christmas Balls’ for several reasons. First, because of our bald heads due to the chemotherapy. Then, for the Christmas tree decorations, of course, and snowballs. But we were also referring to the ‘balls’ [in Italian, a slang term meaning ‘What a bore!’] of having to spend Christmas in hospital, and to the ‘balls’ [also used to mean ‘lies’] that people often tell us” (Fig. 1).

The cover of the CD recording of the Christmas carol, designed by the patient Matteo Davide (with help from the designer Federica Framba; graphic design and art direction by Vitamine D).

The song was written by the patients working together with a team of musicians and authors, coordinated by Stefano Signoroni (researcher in the field of oncologic genetics at the Istituto Nazionale Tumori, and also a singer and songwriter).

From May to October 2016, 29 young people (from 15 to 25 years old) worked on the song; 18 were being treated during this time, and 11 had completed their treatment. The participants met once a week, and a password-protected group on Facebook enabled them to exchange ideas and work on the text of the song from home as well. The music they chose gave the piece a rather retro pop song sound. As Michele (receiving treatment for an osteosarcoma) explained, “To us, the music seemed perfect for evoking the joyful atmosphere of the Christmas season, but it also transmits the sense of pleasure deriving from simply spending time together.” The importance of sharing is emphasized in the chorus lines sung by the whole group, and in the various verses sung by different patients, who create a pleasing sense of dialogue with the different tones of their voices. The teenagers then wanted to add a rap part because this is a musical genre that they particularly appreciate.

“The most exciting part of this project was when we actually recorded the song at the recording studio. We felt like real professional singers,” said Marty (treated for a Ewing sarcoma). “Very true,” said Giacomo (receiving treatment for an osteosarcoma), “but the most fun day was when we did the video recordings.” The recording of the song is accompanied by a video produced with the support of communications company CloverThree and directed by Jacopo Sarno (Supplementary Video, available online at www.tumorijournal.com). The content of the video was another of the adolescent patients’ ideas. It tells of a Christmas party organized in the hospital: we see doctors and nurses on their ward round finding the patients’ rooms empty; then they discover that all the young people have come together in the recreation room to set up a Christmas tree and celebrate. Isabella (who was receiving treatment for an osteosarcoma) told us, “It was great fun to prepare the video together with the doctors and nurses. This way of working together, us and them, on the Youth Project is fantastic. The doctors listen to our ideas and our requests. We feel really involved in designing the things that concern us.” It has become clear over the years, as the whole Youth Project dedicated to adolescents has taken shape, that it is fundamentally important to give “voice and choice” to the patients themselves. In their video, the patients are initially wearing pajamas (even those who arrived from home to take part in the video brought their pajamas along); then they dress up for their party. This is their way of restoring an attractive self-image, of bringing beauty and joy to a place where they generally come to receive a heavy burden of treatment. “These projects help us to want to look good again,” says Martina (who is being treated for rhabdomyosarcoma). “They help to bring beauty into the hospital. In a hospital where there is beauty, there is also life, there is hope.” Paying attention to patients’ physical appearance should be an important facet of advanced medicine with a view to humanizing the treatment of patients. The video shows images of the party alternating with clips from behind the scenes at the recording studio (Figs. 2-3-4).

The making of the video: a Christmas party for the young people of the Youth Project (photograph by Veronica Garavaglia).

Some of the patients pose for the photographer together with the musician/researcher (in the middle) and some caregivers (photograph by Veronica Garavaglia).

The adolescent patients in the recording studio (photograph by Stefano Signoroni).

The meaning of the Christmas carol

Having a project is a powerful medicine for young people being treated for a disease that casts doubts on their short-term future. The Christmas carol project meant that our group of young people were thinking about Christmas from early summer onwards. It meant thinking about themselves 6 months into the future, imagining that they had a future. When people become seriously ill, one of the first things they lose is a sense of having a project, of thinking for the future. Work during the summer months on a song that would be heard at Christmas gave our patients a piece of the future to plan and enjoy.

It was the patients themselves who explained what they meant by the lyrics they wrote (Tab. I).

“Christmas Balls” lyrics

“Christmas Balls (Smile! It’s Christmas Day)”
Verse 1
 Christmas makes sense if you’re with me.
 The party’s ready and you know about it,
 and that I won’t miss a minute of it
 if we’re here.
 And it’s not a film.
 Nothing can come between us.
Verse 2
 It’s a chance to be reborn,
 something that changes you,
 and this urge to smile
 that I still have. It’s a dream in my pocket,
 the universe in a room.
Chorus
 In spite of everything it’s Christmas Day.
 (A very Merry Christmas)
 My heart is full of joy and wishes.
 (All I want for you)
 is happiness
 and the little things that make you laugh.
 All I want for Christmas is your smile!
Verse 3
 Christmas together with those who’re left
 here at my side, in spirit,
 our star lighting our way.
 You’ll be my answer, I’ll start again, become stronger.
Chorus
 In spite of everything it’s Christmas Day.
 (A very Merry Christmas)
 My heart is full of joy and wishes.
 (All I want for you)
 is happiness
 and the little things that make you laugh.
 All I want for Christmas is your smile!
Rap
 The boy in room 13 is thinking,
 The festive season’s coming and his mother’s stocking the larder.
 And he thinks about the gift already placed before him,
 All wrapped up in a box for the yearning.
 He yearns for the normality of other years, for the usual,
 But there’s a judge who sentences you to make do.
 The real normal is the shape we give things. Nobody sleep from now on, because
 The music is starting.
 Pass me the IV line and I’ll hang some decorations.
 We don’t need lights, your eyes are enough.
 They shine with hope and light up the room,
 and to them white blood cells look like snowflakes.
 So the boy undoes the bow of plasters and bandages.
 Who’s to safeguard Christmas for us otherwise!?
 Inside the box is an invitation to join some friends in the hospital visiting room
 that ends with the words:
 “See you in pediatrics to share in the magic,”
 signed by the special Christmas Institute.
Chorus
 In spite of everything it’s Christmas Day.
 (A very Merry Christmas)
 My heart is full of joy and wishes.
 In spite of everything it’s Christmas Day.
 (A very Merry Christmas)
 My heart is full of joy and wishes.
 (All I want for you)
 is happiness
 and the little things that make you laugh.
 All I want is Christmas … and Christmas is your smile!

Samuele is a 21-year-old patient being treated at the Pediatric Oncology Unit for an alveolar rhabdomyosarcoma. He loves rap music and it was he who wrote and sang the rap part of the song. He told us what he meant with his words: “The core theme behind the text I wrote is ‘normality.’ But then the whole aim of the Youth Project is based on the dogma to promote normality for the patients. I imagined a scene where a boy is being treated. He thinks about the fact that Christmas is coming, and he realizes that the only present he really wants is a normal Christmas, something completely ordinary, with his mum preparing Christmas dinner. The box he envisages holding isn’t a box of things he wishes for, but a box of ‘people who are wishing,’ of all the young people who are in his same situation, and who just want to be back to normal.” When dealing with adolescent patients, it is common to see that what they want most is to be treated like normal young people. They do not want to be pitied; they do not appreciate special attention. They want to be like their healthy peers, ordinary young people like everyone else, even though they have had the misfortune of developing a severe disease (the room number 13 in the lyrics of their Christmas carol also symbolizes their bad luck). Despite their cancer, they want the same things in life as other people. They want to fall in love with a classmate, study for a difficult examination, and argue with their parents over how long they can stay out in the evenings; they want to dress up, to get drunk on Saturday nights (8).

Lorenzo (receiving treatment for a brain tumor) told us, “For me, the Youth Project is about entering this room and not needing anything,” and Cristian (being treated for an osteosarcoma) said, “At home I feel like someone who has problems, but here I feel normal, I feel myself.”

These young cancer patients have remarkable willpower and they are determined to keep control over their own destiny: as they said in another song they wrote previously, “Clouds of Oxygen,” “The best feeling of all is knowing you have a future and that it’s in your hands” (7).

“The real normal is the shape we give things,” sings Samuele. “It is up to us, the patients, to decide what Christmas means to us, and how we want to experience it.” He sings, “The music is starting,” and this marks a change of tone, and his words go on to underscore how determined these young patients are to take possession of the things in their lives, and to transform them: the intravenous line is used to hang some decorations, other patients’ eyes are bright enough to light up the room, the white blood cells change into snowflakes, and the plasters and bandages are used to tie bows around the Christmas gifts. As Samuele put it, “With this last image I also wanted to convey the idea of being cared for: the gift of Christmas is safeguarded by the set of people (doctors, nurses, physiotherapists, and so on) who dedicate their professional lives to us, who protect us. In the end, the gift inside the box is none other than ourselves, the friends that embark with us along this difficult path of treatment, the Youth Project and everything that it gives us.” In reality, all the Youth Project can do is offer these young people an idea of normality; it can set the scene. Then it is the young patients themselves who make sense of what they are experiencing (“the real normal is the shape we give things”).

“Christmas makes sense if you’re with me” and “Nothing can come between us” say the song lyrics: the emphasis is on how important it is for these young patients to find peer support, to share their experience of the disease and its treatment with other people who have the same problems. It was Riccardo (treated for a meningeal sarcoma) who said, “Sharing and feeling accepted, preparing ‘Christmas Balls’ together, meant finding a way to come to the hospital (something I generally don’t like to do) for a good reason, to spend time with people I like.” Gabriele (being treated for an osteosarcoma) confirmed as much: “to laugh with people who’ve been through the same experiences as me.” Viola (treated a few years back for acute lymphoblastic leukemia) said that, as she grew up, she had been disappointed with her schoolmates and childhood friends, and her involvement in “Christmas Balls,” and the Youth Project generally, had made her realize there was another way for young people to deal with each other. “What is special here among the young people in the Youth Project is the lack of a hierarchy. The older boys and girls make the younger ones feel accepted and they listen to them. The new arrivals feel they are really welcome. There’s no room for hierarchies or envy here. The Youth Project is something really special. I am well aware this isn’t the world, but I’d like to find in the world the same values as in the Youth Project.” This seems to echo “the universe in a room” of the song lyrics: the hospital becomes these young people’s world, their universe in a room—so we need to find a way to make this room beautiful and fill it with friends.

“I won’t miss a minute of it,” says one of the verses in “Christmas Balls,” emphatically voicing the young patients’ will to live, and their need to live every moment to the full. “I’ve appreciated life differently since I’ve been ill,” said Giacomo.

Leo (receiving treatment for Ewing sarcoma) said, “My contribution to the lyrics is the phrase ‘this urge to smile that I still have,’ which explains why we want to celebrate despite everything, despite the indisputable fact that we’re here in hospital.”

Another phrase in the lyrics for “Christmas Balls”—“it’s not a film”—makes it plain that this is no fiction (like the Hollywood film “The Fault in Our Stars” or the TV series “The Red Band Society”). This is real life, where adolescents become ill with cancer, and where they may die. In fact, a crucial part of the lyrics is the third verse: “Christmas together with those who’re left, here at my side, in spirit, our star lighting our way. You’ll be my answer, I’ll start again, become stronger.” This is an explicit reference to the traveling companions who have been lost. It has happened every year, in every Youth Project. A group of patients embark on a scheme together, but then a member of the group suddenly stops coming to the meetings, and after a while the others learn that he or she has died. Coordinated group activities and programs like the Youth Project create the conditions for strong friendships to develop, but also carry the inherent risk of further pain, giving rise to situations of great difficulty and anguish. In the minds of these young patients, the pain of losing a friend overlaps with the fear of experiencing the same fate, of being the next one to go. Or they may experience a sense of guilt, as Camilla said (after recovering from an osteosarcoma), “You feel guilty for having been lucky enough to be on the right side of the percentage of cure.” The team of doctors and psychologists are on hand to help the young patients cope in these situations, though it is difficult to establish any rules as to how to proceed.

Our adolescent patients touch on this issue in “Christmas Balls.” As Viola put it, “Everyone in the group is well aware of the risk that one of us may suddenly be unable to come to the meetings and may die. All of those in the group are steeling themselves every day to deal with this situation. It’s an idea that you can’t evade, in the ward or in the Youth Project. When you’re faced with the death of a traveling companion the pain is enormous, but when it happens we are not devastated.” Matteo Davide said, “Those who remain carry inside themselves the strength and the way of being of the others, of the friends they have lost. Those who remain have an inheritance to carry forward in the sense of a battle and an attachment to life. They gain great strength, and it helps us enormously to see the same strength in the adults who work with us.”

Discussion

The “Christmas Balls” project proved to be an important experience for our adolescent patients. The value of the Youth Project and other such support schemes has already been the subject of other publications (1-2-3-4-5-6-7, 9-10-11). Such schemes also make sense in that they give the medical staff—along with their young patients—a chance to underscore the importance of providing treatment facilities dedicated to the adolescent patient’s needs (12, 13).

The doctors and other professionals who took part in this project learned a great deal from the young people involved. The doctors consider working with these young patients a privilege, and embrace the following sentiment as their slogan for adults working on the Youth Project: “Be enthusiastic, be creative, be the best you can.”

Acknowledgment

The authors thank the Associazione Bianca Garavaglia for supporting the Youth Project at the Pediatric Oncology Unit at the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan; Giacomo Ruggeri, Tommaso Ruggeri, Jacopo Sarno and all those who contributed to the creation of the song and videoclip; the patients and families.

Disclosures

Financial support: No financial support was received for this submission.
Conflict of interest: None of the authors has conflict of interest with this submission.
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Authors

Affiliations

  • Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Unit of Hereditary Digestive Tract Tumours, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Oncology and Hemato-Oncology Department, University of Milan, Milan - Italy

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