Château de Boulains, 77830 Echouboulains, France.
Email: lenvol@aol.com
(R. Saadoun, S Ulsjacz, C. Fichet, C. Pingot, M. Lebech).
Presentation at the 8th ICCCPO Meeting in Luxembourg, September 6-9,2001
During the last decades remarkable achievements have transformed the outcome of children's cancer and leukemia. However, history has taught us that from every step of medical progress new problems would emerge.
While the survival rate improved and as the word "cure" could at last be pronounced, we had to face the physical consequences of our treatments, such as secondary malignancies, growth impairment, sterility. For years we have balanced the risks and benefits of our protocols, in order to decrease sequelae and side effects, while steadily improving the number of children effectively cured. Considerable progress has been achieved in this field, but the fight is far from over.
We have learnt that the price a child has to pay for being cured can be extremely high. While we were facing the problems of physical impairment in survivors new facts emerged: psychological consequences of fear, of aggressive treatments, and of logical but detrimental long-term family overprotection could deeply hamper self accomplishment and future social integration.
Nevertheless, it became obvious that a child who had been or was affected by a life-threatening or a long-term disease had tremendous abilities to overcome distressing conditions and could build his life and reach self achievement, as long as he could find the proper help in proper time.
Finally, the concepts of resilience and quality of life were reached.
During the course of the disease the sick child meets 3 kinds of partners: parents, school mates, medical and nursing staff. With either of them, communication and verbalization of distressful thoughts appear to be uneasy:
With parents because anguish and love can on both side impair free expression (everybody trying to protect everybody).
With schoolmates, when school can be attended, because the sick child has been through a unique experience which blunts connivance.
With the medical and nursing staff because hospital stays are a time for questioning and fear about the outcome of the disease, the results of X-rays and laboratory tests, and the future treatment modalities.
There is an obvious need for communication with other adults, for peer support and for maturation through new interest and activities.
L'Envol is a non-profit association which provides a medically supported recreation center assigned to welcome children and adolescents suffering from malignant or chronic diseases for a 12-day stay. It opened five years ago. L'Envol aims at reconciling children with life and at restoring strength and eagerness to fight against their disease or the scars of the disease.
The final goal is not to forget the disease but to integrate this inescapable experience in the kinetics of revival.
In France, the project has been initiated by Henri Tezenas du Montcel and Daniel Alagille. L'Envol has been and is being supported by Paul Newman, after the success, in the USA, of the first center built in Connecticut named "The Hole in the Wall Gang Camp", which opened in 1988, and, subsequently of four other centers in the US and one in Ireland.
The center, 80 kms south of Paris, is settled in a one-century-old castle surrounded by 80 acres of woods. Surrounded by a secure and stimulating environment, each child is invited to become an actor who chooses among a wide variety of leisure activities, those through which he will, hopefully, gradually face himself, its illness and the outside world with a new perspective.
The steps leading to L'Envol are the followings: most of the time, L'Envol is known through previous attendants, family associations, nurses, social workers, or pediatricians. From this information, the referring pediatrician in charge of an affected child, fills an application which is submitted for agreement both to the French Social Security and to the medical staff at L'Envol. The Social Security partly supports the cost of the stay, which brings a different dimension to the institution, when compared to similar institutions with only private funding.
For the past five years, L'Envol has welcomed 2061 children,(2229 stays, as some children came several times), age ranging from 7 to 17 years, during 12-day stays from March to September.
There is a high proportion of boys, due in part to a high number of hemophiliacs.
Most of the children come from France. However, we hope to reach in the forthcoming years a higher proportion of children from other European countries: we welcomed this year 34 children from Luxembourg, Spain, Belgium and Greece. Mixing languages and cultures appears to be beneficial.
Regarding the nature of the diseases, during this year's sessions, oncology (leukemias, lymphomas, solid tumors) accounted for about 30% of the recruitment, sickle cell anemia for about 12%, AIDS and constitutional immune deficiencies for 9 %, hemophilia for 5%. The coexistence of acquired or chronic constitutional disease appears to be beneficial, each child admiring the way other children cope with a different disease.
During the spring period as the attendants are less numerous than during the summer vacation we are able to take in charge more severely disabled children.
Health security relies upon the medical staff consisting of one full time and one part time pediatricians, a team of nurses with a supervisor, a chemist and a secretary assistance. The medical staff collaborates with a nearby hospital (pediatric department, laboratory tests and X-rays), when needed. Connections with colleagues of the hospitals who sent the children to the center are often required.
Once the medical security is established what is the scenario? The medical staff works in constant relationship with counselors in order to define individually which activities are appropriate according to the children's condition.
To provide security, one adult (counselor or volunteer) supervises two children. The children are divided into age matched subgroups of 8-10 children who share bedrooms and are under the daily responsibility of 2 counselors and 2 volunteers (the volunteers work only for 12 days, while the counselors are hired for several months).
Most of the children arrive with their parents and the first challenge is to raise quickly their interest in order to alleviate the distress of the family separation. During the first 3 days children have a first glimpse to most of the activities in order to be able to achieve personal choices for the following days.
Painting or carving, music, theater play, swimming in the heated pool, boating or fishing in the pond, nature watching or gardening, horse riding, taking care of animals, video making are the main activities.
As L'Envol is derived from a long history with the French airforce two highlights of the stay are the hot air balloon and a short flight in a small plane with the staff of "aviation sans frontière".
One of the main concerns of the stay is the preparation of evening parties, dances, songs and theater plays for which the children create the scenario themselves.
All these activities have mandatory common features:
There is no competition and hence no winner and no looser
Time for communication between children and between children and adults is preserved and places for private conversations are readily organized
There are 3 periods during the stay : Initiation, Free blooming, Deceleration for landing before departure with the hope of long time benefit.
The aim is to constantly increase autonomy, self-esteem, and confidence through games and communications. We definitely want this aim to be more ambitious than an occupational sojourn with a lot of fun.
We want children to feel they have improved their abilities and realize they have done things they could not believe they would be able to do some days before. Therefore, activities are in accordance with their own pace.
We emphasize that the aim of L'Envol is to realize a continuous fit between activities and everyday health and mood in a tailored individual schedule in order to fit each child's personality and physical condition.
Once back home we want a child to show videos and pictures to his parents and to say: "look, now I can do it". Every child goes back home with a videotape illustrating what he has experienced. Hopefully at that time he has improved his self regard and can in turn help his parents to evolve from overprotection to a more open-minded unstressed partnership.
Assessing objectively the short and long term benefits of a stay in L'Envol is not easy. However I would like to emphasize some remarks from several interviews who have been found to be recurrent.
"I first thought I would not be able to do much. I had trouble with my back. I saw children with conditions worse than mine, and realized I did not deserve so much compassion. I participated in all activities, including horse riding". Sophie, 15y, France.
"My parents overprotect me and stick to me like glue. At l 'Envol, I was proud to have achieved so many activities. I felt free and confident". Charles, 16y, Luxembourg.
"I was somber and gloomy. I met children more disabled than I am. And they laughed. Now I love laughing. Children and counselors have transformed my feelings". Victor,14y, Spain.
"After a long dark period, I met you. You led hope to be restored in my heart. Far away you brushed the shadows… …I will one day walk in your steps…" Aline, 15y, France.
There are several beneficial side effects during or after a stay at L'Envol:
The parents: feeling non-guilty and being confident in the medical security, can either take time for themselves - a break which is often necessary after months or years of struggle and distress - or take more care of the siblings who are often left aside and can turn out to be jealous or sad.
"Quentin has attended a summer camp like his elder brother. An important point for him. This allowed us to share some days with our other son who eagerly needed it…" Quentin's (12 y.) parents (France).
For the volunteers: taking care intensively of severely ill children leads to questions about life and death and can accelerate psychological maturation and help to better organize the hierarchy of individual problems.
"It took me several weeks to overcome my stay at L 'ENVOL. Tiredness of course but most of all deep emotion and great joy. Children were exceptional : both so fragile and so strong" (Laure, volunteer, 22 years).
Finally, we now feel we have acquired a knowledge which can be applied to a great variety of distressed children. Our aim is to widen our actions in time and space, that is to welcome children 8 to 10 months per year, including school periods. This aim needs other methods such as mixing school and leisure, organizing short stays for families and family associations, welcoming siblings and patients during week-ends. In space with more children originating from other European countries and hopefully from Eastern Europe or Southern countries, as soon as we can find the funding.
Our ambition is, by sharing experiences between all categories of involved adults, to reach a better understanding of the way to help children: through respect, discretion, and admiration for the way they accomplish the tremendous task of coping with a distressing situation.