How does the “Golden Ribbon Center” help parents?

On 15th of February 2013, the first and only in Bulgaria Daily Centre for children with cancer has opened its doors. It is a couple of rooms situated in the University Hospital "Tsaritsa Yoana - ISUL", nearby hospital ward of Pediatric cancer clinic. It is opened every weekday from 09:00 to 17:00, for children on active treatment, maintenance therapy and survivors. Sofia Municipality gave us he rooms and thanks to many donors our efforts, they turned into a bright and colorful place for children where they can find shelter from severe manipulations.

 Far from the hospital setting, kid's playroom is a quiet place for games and fun. A small library, a game room wit computers, play station and many board games are provided for teenagers. In the art room there is a creative spirit and the small hands sculpt marvelous souvenirs, jewelery and paintings. Psychologists work on specially designed programs to meet the needs of children and young people, provide appropriate support in the difficult stages of active treatment, maintenance therapy, manage the psychological traumas that cancer and treatment bring to the child and his / her family in the process of recovery. Their work helps to overcome crisis moments, traumatic experiences such as children and parents, activation of resources, and the ability to move forward.

Besides a children's playground, the Daily center is also a room for parents who receive psychological support, art activities and shared moments with “brothers in arm”.

Our team has successfully implemented mobile activities in the clinic. Every Tuesday and Wednesday we have art therapy and we do social counseling with parents. We meet the new patients and their parents by giving them a friendly hand. We answer all the questions that worry them about the daily challenges of families, the difficulties and the pain, despair and hope ... They have repeatedly told us that one of the most valuable support is the casual conversation with a brother of destiny and to hear words - "My child was also here, and now he or she is healthy - studying, dancing, dreaming ... There is a long way in front of you, but everything will pass, you will learn to live with the disease and in no time they will be healthy and happy again".

What is it’s working time?

It is available to parents and children every weekday from 9 am to 5 pm and for those who are actively treated in the hospital as well as those who undergo support care and successfully are fighting with the disease. All accommodations in the center are provided for free by Sofia Municipality and with the help of donors and personal labor they have become a bright and cosy place for relax for the children after the heavy manipulations.

What are the services (therapies, meetings with psychologists, etc.) that are provided for free?

To bring the kids out of the hospital for at least a bit, we have made our rooms a peaceful place to relax, play and make friends. For teenagers, we have provided a small library, a computer room, playstation and many board games. In the art-therapy room, the children create fine artworks such as souvenirs, jewelery and paintings. The day center is also free for use by parents, fully created to help them and bring relief as much as possible. In “Golden Ribbon”, parents can receive psychological therapy, participate in artwork also in the form of therapy, and share experiences with “brothers arms”.

A psychologist, pedagogue and administrator are also working at the Day Center, also on a voluntary basis.

Apart from the center, the team successfully develops mobile activities in both the clinic and the ambulatory. Every Tuesday and Wednesday we are available for art therapy, social consulting for parents, as well as for those who can not be away from the hospital room. We visit and meet the newcomers and their parents and give them a friendly hand. We answer their questions about the daily challenges of families on the path of treatment, the difficulties they will face, the worries and sleepless nights, the pain, the despair, and mostly about all the hope they need to have.

1.3. Who are the people, who created the association and why a parent should trust them?

The association is built entirely on the bitter experience of parents struggling for their own children who are suffering from oncohematological diseases. They are the wonderful example of how faith, strength and hope can do miracles. That is what makes them the strong shoulder that every parent in this situation needs and can lean on.

As they themselves share - one of the most valuable things at that moment is the casual conversation with a “brother in arm” and hearing the words - "My child was also here, and now he or she is healthy – he/she studies, dances and dreams ... a long way, but everything will go away, you will learn to live with the disease and in no time you will be healthy and happy again."
 

Can children who have cancer be healed and in what percentage?

Yes, a very large percentage of them are healed at the end!

The statistics show that between 150 and 200 children aged 0 to 18 years in Bulgaria each year are diagnosed with cancer or other oncohematological diseases. Disease comes suddenly, therapy is severe and lasts from 6 months to 3 years, and sometimes for a lifetime. It is accompanied by high doses of highly toxic drugs, aggressive radiation therapy, invasive surgical procedures, requiring in some cases surgical removal of organs, limbs or other secondary injuries. Some specific conditions also require bone marrow transplants, bearing their risks and side effects. By going through all these stages of the treatment, children are forced to live with pain every day, often reaching the limits of human tolerance. Their appearance changes to unrecognizableness, the loss of a friend from the clinic is sometimes inevitable, and the severity of the diagnosis, the fear of it and the thought of a fatal outcome are their companion. They suffer from an immune deficiency. where even minimal contact with viral infections can lead to fatal outcome. Therefore, children are forced to minimize their social contacts. Living in an isolated environment, they can not go to school, do sports, attend various events, courses, or be among their friends. This exposes them to a risk of dropping out of school, an abrupt change of the established social status, inability to obtain competitive knowledge and competence, even after recovering from the disease.

The "miracle of medicine" - the so-called oncohematological diseases, it’s because the percentage of fully cured children which is over 80 per cent. Childhood cancer is considered a "miracle" of modern medicine. Between 65% and 85% of childhood cancers are now being treated with appropriate medication. This is an impressive leap compared to the mid 1970s, when the 5-year long-lasting remission was below 50%. However, this percentage varies depending on the type of disease and factors such as the state of the health system. Unfortunately, the consequences of both the illness itself and the treatment often result in a number of physical and psychological traumas, later effects and discomfort.

As treatment success rates in the developed world over the past 30 years rose sharply, to medical specialists, a new challenge for learning, tracking, managing and coping with late effects that disease and treatment can cause. Recent studies have shown that they sometimes occur many years after treatment is finally over. The social and educational system, as well as society as a whole, are also responsible for the successful return of children and young people with oncohematological diseases back to normal life.
 

What the kids are going through and why?

During an extremely severe active treatment and a support care therapy, it is often necessary for one of the parents to leave their workplace, which often causes financial difficulties in the family. Its members are forced to live separated for a long period of time, because there are three clinics in Bulgaria - Sofia, Plovdiv and Varna - and children from all over the country are treated in one of these three cities. Those living apart from one of the parents, usually the mother, healthy siblings and brothers, are also in an unfavorable situation. They are inevitably placed second, living with fear and worries about their sick brother or sister and are at high risk of psychological trauma.

Until recently, one of the main problems for children with oncohematological diseases was the lack of medicines from the basic compulsory treatment protocols, which are not included in the positive list and the NHIF does not pay for them. Since some of these life-saving medicines were not even sold in Bulgaria, this brought additional stress to families. In the period 2013-2016, thanks to the donations received, the association managed to provide financial assistance to the hospitals in Sofia, Plovdiv and Varna, where they managed to buy the missing medicines. At the moment and after a lot of collective struggles and fights, medicines are paid by the Children's Fund.

Another difficult achievement of ours is the fact that we managed to provide anesthesia for the extremely painful manipulations (myelograms) to children who are being treated at the Clinic of Pediatric Clinical Hematology and Oncology at the University Hospital "Tsaritsa Yoana - ISUL". Until the year of 2015, they were carried out without anesthesia. Thanks to our efforts, to date, at the request of the child and the parents, the manipulation is conducted under complete anesthesia.

Because of the high toxicity of the drug, so-called late effects can occur. Children survive, live for years, but these effects appear. In Bulgaria, unfortunately, there is no one to watch for their occurrence, but there are centers in Europe and the United States where they are observed. They may occur after 10, even 15 years. Years later, when a healed child is already older, every doctor needing to later know what has happened to him in order to get the best and most adequate care.

All action against the disease must be timely and the Association is trying to help families to do so.
 

What are these children really thinking and wanting?

It is extremely important for children to see positive examples around themselves. That's what we are trying to do in the Association to bypass the sick children with families already treated to show them the light in the tunnel. All children need first of all the adequacy and strong parental arm - yes, the diagnosis is extremely difficult and the fight is hard and long, but as we have said - 85% of the children manage to cure themselves. All children and parents should be aware that the fight does not end with the end of the treatment, it goes on long afterwards. And because the children are wonderful and strong fighters, they need just as strong parents to walk this long way side by side with them.

No kid needs regrets. They need friends, parents, classmates, brothers and sisters to take them out of the "comfort" of the hospital room and make them feel like any other healthy child. This is also valid for their teachers - children with oncohematological diseases do not want to be treated as "glass" - they do not want sympathy and special attitude. They want a normal life, a belief in their abilities to fight, optimism and strength.