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OUR PROGRAMS  Permanent projects
Due to the deficiency of personal from hospitals, quite often the parent becomes also the nurse of her/his child, besides her/his role as moral upholder. A child treated with cytostatics, Prednison and similar drugs, with side effects known well by many, is very weak and his appetite is almost non-existent.  As a
result, the child
needs constant care. The parent is the one who feeds and keeps clean her/his child while in hospital. Sometimes the parent is the one who surveys the administration of the drugs in time. And when they share the room with an orphan child (like Ionut, Alina or Stefana), they become the temporary foster parents of this one. Also the parents are the ones who survey the hygiene of their child during hospitalization, by asking to the personnel to clean the room and to change the laundry. In spite of all these, nowhere in Romania you will find a place in hospitals reserved for the relaxation of the parents. This relaxation meaning 20 minutes of resting in an armchair while your child sleeps. It's no way for them to have a shower after a night spent near the bed of her/his child. To help the parents for this purpose, we succeeded in creating a resting house for them, where they can come and stay for free during the treatment of their child. This house was opened in October 1998, in the presence of the Romanian president and of other visitors from abroad. Since the beginning Parents House registered over 1200 entries, parents and children. This house has three dorms prepared with all the necessary things and a playroom for children. These are part of a five-room flat, the fifth room being the office of P.A.V.E.L. The flat was bought and furnished by the Dutch foundation Kinderen in Nood, from Bussum and offered with rent free to Association P.A.V.E.L., to be used for the program Parents' House. We hope that this flat will be donated in one day to our organization - to guarantee for long term the existence of the Parents' House or even, the organization will get - for the same purpose - a larger space, with a small garden.  
Partener
for the Parents' House project in 2006 and
2007 is
the company
The Resources and Services Center is the result of the
partnership between the Association P.A.V.E.L. and the Oncologic
Institute "Prof. Dr. Alex Trestioreanu" Bucharest, a partnership having
as a goal the diversification of the services provided to the children
with cancer and to their families and the strenghtening of the
public/private institutional framework for action in the field of
cancer.
The address of P.A.V.E.L. Resources and
Services Center is: Phone / fax: +40 (21) 311 27 00 In September, it will start to
function a Helpline
telephone, thanks to the generous sponsorship of ROMTELECOM company, who offered
for free use also another telephone line and internet. The presentation of the project:
"Building the Future for the Children of Romania" (in short)
1. Background / Country situation: Cancer is at the present time an important public health issue, being the second cause of death in Romania. More than 40,000 people die yearly of cancer, while more than 45,000 new cases are diagnosed. Ignorance, lack of information for the public, seconded by a limited commitment of the authorities in the field lead to a late diagnose of the disease and, subsequently, the treatment becomes extremely costly, aggressive, involving more sufferance both for the patient and his or her family. Also, in almost 75% of the cases, healing is not possible any more. For this reason, the public perception is wrong, making out of cancer a merciless diagnosis, the equivalent of a death sentence. Cancer is also an important cause of death for children or teenagers. The types of cancer developed in a child are different than the one in an adult, as location, frequency, histological types and treatment, needing, therefore, a different approach. But, as in the adults’ case, early diagnose represents the essential premises for healing, being a clinically proved fact that the early diagnosed tumors in children can be cured in 80-90% of the cases. Treatment is though, a long-term one, in many cases the patient needing to be admitted in the hospital together with a family member. Crashed by a terrible diagnosis, children and parents find themselves together in a critical situation they don’t know how to manage. Children are taken apart from their group of friends; in many cases, they can’t go to kindergarten or school or, if they go, they are treated somehow different. Above all these, they also have to deal with the pain or the inconveniences caused by the treatment and the fact that they spent so long in the hospital, confined to their beds, generates agitation, nervousness. Changes in their physical appearance also generate frustration. Parents don’t know how to cope with this situation, either emotionally or financially. They live through this traumatizing experience with no information concerning the disease, the proper treatment, the living conditions required in these cases or the legal rights of the children in this situation. In the European Union, services for patients, especially those with an incurable or a long-term cure disease, take into account all the aspects dealing with the life quality or the social aspects involved. In Romania, there is no systemic, coherent thinking on approaching patients’ complex needs, medical policy restraining itself to providing medical assistance and treatment. Also, there is not inter-institutions cooperation on the problems of this type of patients. By the nature of its field, PAVEL Association is the only organization that got itself involved in supporting families of children with cancer, who are receiving medical treatment in Bucharest (the onco and hematology pediatrics clinics from here are treating children and teenagers from a large area of Romania) and among the few NGOs working for cancer patients, in the country. Therefore, PAVEL Association is for a long time concerned with all these issues. Within PAVEL, it is known that only good information makes the difference between a healing treatment and a treatment that only postpones the unavoidable. PAVEL knows about the need for support for children with cancer and for their families and knows also that, in order to make a real difference, a change has to be done in the national medical policy. Considering all these aspects, PAVEL Association has as a goal to involve in delivering information to the public and in making the public aware of the signs and symptoms that may occur in an early stage of the disease and which, if considered, may lead to an early diagnose of cancer. PAVEL Association wants also to deliver to those interested information on the possible types of treatment, on the services provided in Romania and also on the rights of the children with cancer. Within the frame of this project, PAVEL wants also to provide counseling and support services for both children with cancer and their families. All these could be coordinated from a resources and services center opened in the Oncology Institute, which is in the same yard with the Clinical Hospital Fundeni, from Bucharest. This location was chosen considering that, among the hospitals with pediatric oncology wards from Bucharest, the Clinical Hospital Fundeni provides medical care for an important number of children and teenagers from all over the country. Weekly, about 120 children with ages from 1 to 19 years are treated in the pediatric hematology ward of the hospital (the Paediatrics Clinics 1 and 2), and in the Oncology Institute, at the Pediatrics ward about 60 children are treated weekly. The third hospital, which is in another location of Bucharest and where there is also an oncology ward, is : Emergency Clinical Hospital for Children "Maria Sklodowska Curie" (known also as Budimex), which provides treatment for about 50 children weekly. PAVEL Association thinks that the approach in such a complex and sensitive field as the issue of children with cancer needs cooperation and commitment from the part of as many actors that may have an important part in shaping and enforcing proper, even practices, according to the European requirements and standards. Therefore, the goal of PAVEL Association, through this project, is to facilitate the cooperation between authorities and NGOs, to promote good practices, allowing emerging initiatives that would reinforce the institutional framework in providing care for children with cancer at national level. We think that, through the enclosed activities, the project is more than helpful for children with cancer and their families, properly meeting their needs, reinforces the institutional cooperation, promotes good practices, supports the experience exchange, capitalizes and spreads the existing experience. By spreading the specific information, it plays a part also in the early diagnose of cancer in children, significantly increasing the healing chances, and it also plays a part in the mentality change both of the patients and of their communities. 2. Objectives The goal of the project is the improvement of the grade of information and awareness of the parents, professionals, organizations and public, on the issue of children cancer. Objective nr. 1 Diversification of the resources for parents, professionals, organizations and public, on the issue of children cancer. Objective nr. 2: Increase of the information and awareness level of parents, professionals and public in Romania on the prevention, treatment and services available in the field of children cancer. Objective nr. 3: Reinforcement of the public-private institutional framework and sensitizing of the professionals, authorities and public, in order to observe and promote the rights of the child with cancer. 3. Description of the project The project is expected to stimulate a change in the manner in which the Romanian parents, proffesionals and authorities respond to cancetr issues and to provide direct services through the Resources and Services Centre and practical guidance in designing local action plans to address this problem through partnership in Romania. It will also raise awareness of the professionals and policy makers on the importance of acting in timely manner ways that complement and coordinate interventions addressing health problems in Romania. In addition, it will increase the expertise and visibility and will prove the effectiveness of coherent actions of the P.A.V.E.L. Association and its partner through Centre activities. The general strategy of the project is based on the creation and consolidation of a Resource and Services Center, a partnership between a NGO, association of parents of children affected by cancer (PAVEL Association) and a public institution, a hospital (Oncologic Institute) and a good communication and dissemination of information on cancer prevention and treatment. This Center will represent a milestone both for the parents of children with cancer who benefit from the services provided by the hospital, coming from all over the country, for the professionals in the field and for the public. The Center will be run by a multi-disciplinary team, which will set an example of coordination and cooperation in Romania on the issue of children with cancer. The advocay actions aiming the local and central authorities are, therefore, an essential part of this project. Our goal is that parents and children, beneficiaries of PAVEL Association and of the hospitals mentioned above would have an essential part in the activities of this project. Sustainability objectives: · Attract national and international support in the form of donations, grants and exchange of experience for the development of the Resource Centers for Cancer in Romania in the next three years; · Promote the work and results of the Resource Center at the local and national level, especially in relationship with hospitals, Universities, national companies and government and attract their support for further developing this Resource Center and others in Romania; · Continue to attract professionals and parents in order to generate and mobilize local resources on a continuous and growing basis to address community level needs. The partner of the project is : Oncologic Institute, from Bucharest. It is possible, as future partners of this project to be also : CLINICAL INSTITUTE FUNDENI, Paediatrics, EMERGENCY CLINICAL HOSPITAL FOR CHILDREN "Maria Sklodowska Curie" The activities within the project are thought in order to meet actual needs, identified at the level of the target population and at community level and to secure reaching the goals with efficient, long-term results. Activity 1: Establishing the Resources and Services Center in the field of children cancer. Activity 2: Establishing, updating and developing a database. The database will be constantly updated and developed and the information will be accessible both directly in the Resources in Services Center and through the site that will be developed within the framework of this project. Activity 3: Organizing a Library/Video Library Within the Resources and Services Center, a library/vide library will be organized, containing materials useful both to children with cancer, their families, staff in the field, and also to those interested in developing formation activities in the field, needing documentation. Activity 4: Creating the Website The website of PAVEL Association will be improved and developed by adding a website component of the Resources and Services Center, emphasizing two elements: database and discussion forum. Activity 5: Establishing and functioning of a Cancer Help Line Activity 6: Providing direct support services to children and parents Within the frame of the project, PAVEL Association, together with the multi-disciplinary team of the Resources and Services Center in the field of children cancer, will provide the following types of services: - Social assistance and counseling; - Psychological assistance and counseling; - Legal counseling; - Support groups for parents and “school for parents” type of services; - “Respiro” type services (free accomodation, recreative activities,..); - Facilitating contacts with doctors and clinics from abroad. Activity 7: Making off and disseminating information materials The topics of these materials will approach: 1) prevention of children cancer (favoring factors, prevention means, etc.), 2) early diagnose, 3) treatment available in the world and in Romania, 4) services provided in Romania and any other needed materials. Activity 8: Awareness raising activities Through awareness raising policies, policy makers, public authorities, media and other stakeholders will be exposed and will learn about prevention of children cancer and about the issue of children with cancer, being in direct communication with PAVEL Association and its members, parents and collaborators. This way, we think that there will be the opportunities and premises for decision making considering the existing needs and priorities. Activity 9: Organizing a seminar with representatives of Romanian cancer organizations, in order to mobilize local resources and to elaborate an action plan. Activity 10: Organizing a national conference (February 15) Organizing a national conference will mark the culmination of the project, because it will create the opportunity to present the results of the project, the prevention and improvement of the situation of children with cancer in Romania and it will create a formal frame for a dialogue between all the actors involved, both in the public and private sector.
     Periodical projects
Buying medicines for the parents Our association tries to help the families of children ill of cancer by buying those medicines needed in the treatment of the these children and which are missing from hospitals, and due to their high price they can't be bought directly by parents. For buying these medicines, during the years, we received the help of Ordre de Malte and PAVEL France, of Kinderen in Nood from the Netherlads, Health Aid UK, Een Haerz fir Kriibskrank Kanner from Luxembourg etc. We have created also a site: www.asociatiapavel.home.ro which have the same role of informing and communication.
Assuring
the food for the parents from the hospital
For
the past years,
we succeeded in providing the food for the parents and children found
in
P.A.V.E.L. House and in hospitals. Material help
for the families with children ill of cancer Through the agency of P.A.V.E.L. several families and other people in need (poor, with handicap, affected by floods,..) received help consisting in food, clothes, shoes, toys, wheel chairs, etc.
Occasional projects Improving
the endowment of onco-paediatrics clinics
With
the help
of foundation Kinderen in Nood, there were organised seven transports
with
furniture 
Helping
the parents by contacting different hospitals and clinics We got treatment abroad free of charge for 6 children, ill of cancer, thanks to the local organizations, church and authorities. Also, we helped many other ill children and young people to get in touch with different clinics or doctors and we learnt their families what and how to do to get there; we supported them in their fight to get the money for the needed treatment or operation.We also try to link our doctors with doctors from other countries, to share their knowledge and experience.  Loredana, before to leave for treatment Participation at campaigns and actions in the favor of cancer patients and hospitals
The following up results on April 2005 were: all the money (6,295, 402, 913 lei meaning almost 179, 869 Euro, including the interest, too) collected in the fund - raising (the Campaign "Pretuieste viata") - done for the developing of the Romanian medical system in order to realise the bone marrow transplant for the cancer patients - were transfered on the 06.04.2005, from the special (campaign) accounts of the Association P.A.V.E.L. (opened for this occasion) into the accounts of the three bone marrow transplant units from Romania, from Bucharest, Timisoara and Targu Mures (Clinica III - Compartimentul de Transplant Medular al Spitalului Clinic de Urgenta pentru Copii „Louis Turcanu”, Timisoara, Departamentul de Hemato-Oncologie si Transplant Medular al Institutului Clinic Fundeni, Bucuresti si Clinica de Hematologie si Transplant Medular al Spitalului Clinic Judetean de Urgenta, Targu Mures). Each unit received the same amount of money.
30 of these were
donated to the organization ABC from Brasov, for the cancer patients.
Events concerning this
occasion may be run for up to a month around this date.
Emotional support, educational
and entertainment activites The long of the years we have
developed different activites of entertainment
(trips, drawings exhibitons, Easter, Christmas and other
celebrations activities developed in the
oncological / hematological wards), playtherapy and educational
activities in order to help children and families cope with
the challenges they face daily.
Trips
with ill children .
We
try as
best as possible to give to the children a better quality of life to
make them strong and fight themselves for the future.
Last three years, we took 25 children, together with
their
parents in trips into the mountains, for three days - and we noticed
that in a such a short time, the children became closer together and
stronger in their attitude to their illness.     
 
Images
from Survivors
Day 2005, celebrated at Brasov
Exhibitions
with drawings of the ill
children In June 2001, P.A.V.E.L. organised two drawing exhibitions which took place at Connex (on 4th June) and at British Embassy from Bucharest.   Playrooms in
hospitals (permanent program) The playrooms are
designed to ease the loneliness, fear and boredom that accompany long
hospital stays. They provide children with an inviting place to play,
relax and connect. Additionally, we brought fun-filled special
events involving musicians, clowns and other entertainers to pediatric
hospital patients - even those who are bedridden - to provide a morale
boost and important social interaction. From May 2007, thanks to the Foundation Kinderen in Nood, we can pay part - time salary for a playtherapist for this playroom and also, thanks to a private person, we can pay also a part - time salary for a playtherapist for Oncological Institute. In 2003, at the hospital V. Gomoiu from Buharest, it was completly refurbished another playroom, with the help of our volunteer, Mr. Frank Cridland and material support from foundation Kinderen in Nood.For two months, Angharad Davies from Swansea, South Wales, student at Psychology Faculty in Cardiff worked as volunteer at the playroom from this hospital (she helped us furher on through contacts in UK, for getting funds for a playtherapist' salary, for 2006). In 2004, this room was transformed by the managers of the hospital, in a medical cabinet, loosing unfortunately this useful place for children. In 2007, thanks to the generous contribution of the company sanofi aventis, at the 5th level of the Oncological Institute "Prof. Dr. Alex. Trestioreanu", near the Pediatrics ward, we created: a new small Playroom and in the ward, two corners, one for the relaxation of the parents and other, for the play for those small children, who can' t leave the ward. With the generous help from Foundation Kinderen in Nood, IWA, sanofi aventis, Mobexpert and a private person we refurbished /improved the playrooms from the hospital "M.S.Curie" (Budimex) and the Oncological Institute, the relaxing corners for parents - at the oncological wards (from both hospitals), the P.A.V.E.L. Center, the P.A.V.E.L. House and the launch room for children from pediatrics (from Oncological Institute). Also we got the necessary educational materials for all these places. We got from private persons donations in toys, DVD, video -tapes, books - and we thank to all! We thank to all mass media representatives for their support, starting with June 2007! Also, to all the volunteers who helped us to keep the activity going at the playrooms.   The playroom from 'Dr. V Gomoiu' hospital and Angharad as playtherapist, in 2003     Organising festivities for children in hospitals Since
the winter of
1995, we have organised each year Christmas and Easter celebrations
with
presents for the children found in the onco-paediatry clinics of
hospitals
Fundeni, 'Maria Sklodowska Curie', 'Victor Gomoiu', 'Grigore
Alexandrescu' and Oncologic
Institute
'Al. Trestioreanu' from Bucharest. We also used the occassion of International
Childhood Cancer Day - to give gifts to the
children
from hospitals.
        The celebration of Christmas 2005, in hospitals (Fundeni, Institute Oncological and Budimex) Merry Christmas and a Happy New Year! 2004
On the 23nd
of December 2004, Olga Cridland, Tuta Visescu,
Mariana Zamfirescu, Cosmin Halmagi and Frank Cridland
from the Association P.A.V.E.L. organized the
Christmas celebration at the oncological and haematological
paediatrics departments from the hospitals: Fundeni, Oncological
Institute and M.S.Curie.
Next days, it will be organized a similar event for the children of the members of the Association P.A.V.E.L.. Father Christmas was Cosmin Halmagi. This celebration was organized together with Andreea Marin from "Surprize, surprize" TVR program and her team. Future
projects
P.A.V.E.L. Camp for children ill of cancer
(SMILES on WHEELES)
Also, we wish to buy a mini-bus for
children, for trips, for weekend events and for transporting (as
an ambulance) very ill children or who died (of poor families) - at
home, in province. As founder Paul Newman says, "It's not that the children say, 'Thank you for a wonderful time...' it's that they say, 'Thank you for changing my life'." Founded by Paul Newman, Barretstown camp opened in 1994. The core summer programme is a unique 10-day therapeutic recreation experience. Supervision is highly individualised with a minimum two-to-one ratio of children to carefully trained supervisors. Children come to Barretstown from Ireland, Britain and throughout Europe, diagnosed with a wide range of illnesses - primarily cancer and serious blood diseases. Barretstown's medical centre is staffed 24 hours a day by paediatric specialists and nurses. Barretstown will have served over 11,000 individuals by the end of 2005 (for the past 10 years), having grown from serving 124 children in 1994. Barretstown also provides spring and autumn programmes serving children and families. Barretstown must raise nearly $5.3 million per year to provide this remarkable programme free of charge, including round trip transportation and impeccable medical supervision. Around 700 children and their families who have benefited from Barretstown’s programmes over the past 10 years came back for a spectacular 10th birthday party with founder Paul Newman. Over 11,000 children with cancer and other serious illnesses have taken part in Barretstown’s life-changing programmes since the charity was set up in 1994. Their stay and their airfares have all been provided free. Paul Newman was in party mode as he arrived to kick-start a day of ‘serious fun’ for past campers, their families, staff, volunteers and friends of the charity. Party-goers were entertained by Fossets Circus, as well as music by Westlife tribute band Westlike, arts and crafts, face painting, games and bouncy castles. Families were invited to take a tour around Barretstown’s facilities, and for past campers it was a trip down memory lane. Declan Noone, 21, from Creggs, Co Galway, came to Barretstown several times as a teenager and has now come back as a volunteer or ‘cara’ to help the children at camp. He joined Paul Newman on stage and presented him with a sculpted bronze lamp. The ‘Fairytree’ lamp made by Genesis of Mullingar, Co Westmeath, depicts a sad child at the base, a second child beginning to find their feet and a third reaching up towards the light—Declan said this shows the difference the Barretstown programme makes to a child. He told the party audience: “I was here years ago as a camper and today, for the first time in about nine years, I saw two of my very first caras. I am still giddy and nervous about talking to them as they meant so much. The entire place has meant so much to me growing up and was so important because it has made me the person I am happy to be. Coming back has been incredibly special too. I want to say thank you to Paul from every single one of the families and all of the 10,000 children whom you have made happy over the last 10 years.” To cheers from the crowd, Paul Newman accepted the sculpture and said: “One of the most incredible parts of all this is how much nourishment there is—how much nourishment we try to provide for all of you. But you give just as much to all of us by what you do.”
Realising these projects was possible thanks to the donations and
sponsorships
received from private persons, organisations and companies from France,
the Netherlands, Germany, UK, Luxembourg, Canada, Romania etc.
 
 
 
and to all the other donors and private persons who help us. |
