OrangeRibbon Nepal

Imagine your own child to have been diagnosed with cancer and having to undergo a treatment of chemotherapy for 3 years. Not only that, but also having to deal with enormous physical and mental suffering, like loosing your hair, pain, nausea, vomiting, fear of death and many others. The socio-economic and mental burden on the patient and their families is great. However, the good news is that the most common childhood cancers like Acute Lymphoblastic Leukaemia, a type of blood cancer, have survival rates of about 80-90% nowadays in developed countries. So there is hope and the years of suffering and hardship have a reason, namely that there is high change of survival and the child’s life can be saved.

In Nepal there is only one specialised centre for the treatment of children with cancer, namely Kanti Children´s Hospital in Kathmandu. Children with different types of childhood cancers have been undergoing chemotherapy at Kanti since many years. The two paediatric oncologists use authentic protocols to treat the children, but there are many constraints working in Nepal. The public awareness of child cancer in Nepal, for example, is very low. Childhood cancers are still considered not to be curable and the government does not adequately recognize cancer care and do not see it as a primary health issue. Therefore, the care for children with cancer in a developing country like Nepal is still suboptimal and is a subject for improvement. Cancer is a great taboo and sometimes it is considered to be the patient’s own fault or as God’s punishment. Still one in 600 children will have cancer at some time during childhood. This means that it is time for public awareness to increase.

This need to increase awareness for child cancer in Nepal was one of the main reasons for Raymond Guy Landgraaf, a medical student from the Netherlands, to organize a patient meeting, a day especially designed for a child with cancer. Raymond does his final elective at the oncology ward of Kanti Children’s Hospital, is medical director of Orange Ribbon international and works for Medicine for ALL, a Dutch charity organization sponsoring children’s treatment at Kanti. “I just wanted to put the child in the spotlight and let them tell how they experience their illness and give them the opportunity to express their feelings and emotions”, he said.

The day consisted of interactive games, music and play, a nice lunch, words from the volunteers, paediatric oncologists, the Director of Kanti Children’s Hospital, but most important from the children and their parents. The latter could give feedback on the treatment and provide the staff of the oncology ward with suggestions for improvement. The Clini clown, the Joker, was there to put a smile on the children’s face, play with them and ask stupid and ignorant questions like: “Doctor, is laughing a good medicine?” During this fruitful day, where the child with cancer was a central point, many of the constraints associated with child cancer in Nepal were subject for discussion. Major constraints are the lack of resources and manpower, poor management, medical and supportive care, poor hygiene and sanitation, malnutrition, shortages of medicines in the market, lack of medical facilities, etc.

One of the parents emphasized the importance of the own responsibility of patient’s party, hygiene and sanitation and suggested to organize parents group. Dr. Rupa, medical officer of the oncology ward said: “The parents got the opportunity to frankly give their feedback about their children’s therapy. This type of interaction is vital and there is no platform for the patient’s party. It will be good for the patient’s party to unite and start the organization”. “This should be done more regularly. It was a remarkable event for those who suffer from cancer and those working with children suffering from cancer. Making the children happy is important and Orange Ribbon is great initiative” said Dr. Khagendra Devakota, medical oncologist and medical officer at the oncology ward.

At the end of the successful evening Raymond Landgraaf, dressed as the joker (the clini-clown), addressed the subject of child cancer awareness and explained the vital role of Orange Ribbon. Orange Ribbon International is a charity non-for-profit organization which primary mission is to promote awareness for child cancer world wide. The Orange Ribbon is the symbol for child cancer awareness like the pink ribbon is for breast cancer. The colour orange because of the tribute to the Dutch roots of the organization, but also because it reflects warmth, energy, change and health. Besides providing information, resources, support and guidance for patients, parents and caregivers it generates funding for institutions dealing with Child cancer. Moreover, there is a strong emphasis on the psychosocial aspects of the disease. Orange Ribbon collaborates with organizations like Medicine for ALL who supports the oncology ward at Kanti. May, the month of young life, will become the Child Care Awareness Month and there will be set up a separate section for child cancer awareness in developing countries. The future is bright, but there are many hurdles to overcome and lots of challenges, especially for the awareness of child cancer in developing countries. But Nepal is a good country to start this struggle.