Bakari dunia is a delightful little 3year old boy who has been diagnosed with a cancer of the eye called retinoblastoma affecting his left eye. He comes from far west of the country – a beautiful but remote place called Kigoma, (close to where Jane Goodall famously worked with the Chimpanzees). TLM has not yet managed to partner with any hospital in Kigoma and so there is no one in the region that could help him rapidly access expert care. His symptoms started with a slight squint. His mother brought him to hospital where he was examined and Mama was reassured. However, as time went on his squint became more obvious and he started feeling a painful pressure in the affected eye.
His mother was sure that something serious was wrong. She had no idea what that might be but she knew he needed help. She visited a second hospital in the region but they had nothing to offer. Nor did they refer him onwards. But his mother, who has a primary school education, was not at all satisfied and was determined to find answers. She decided, without a referral note, to travel 1500kms to bring her precious little boy to Dar es Salaam in search of a service that would finally diagnose and treat her child. She marched into Muhimbili National Hospital and pleaded with us to take her concerns seriously. And of course she was right. Mothers always are!
When Bakari was admitted on Upendo Ward we found the tumour which had begun on the retina of his left eye 5 months earlier. Unfortunately, in that time it had grown large filling the entire eye ball. And our CT scan showed further bad news – that the tumour extended into the nerve behind the eye. Treatment is possible for this advanced tumour but involves removal of his eye, 36 weeks of chemotherapy and 3 weeks of daily radiation, almost a full year of intensive treatment.
This is a story we have heard many many times over the years. Hero parents repeatedly attending hospitals knowing something serious is going on and refusing to give up. How many more families were lost before finally reaching MNH/TLM? These are the stories that inspired TLM to start building the National Children’s Cancer Network – a collaborative network of hospitals all over Tanzania supported by the TLM/MNH partnership who know how to diagnose and treat childhood cancer. So far we have reached 11 hospitals – but we urgently need to expand to more than 30 sites so children like Bakari are diagnosed on their first presentation with early disease and an excellent chance of cure, not many months later with advanced disease, very tough treatment and a much more guarded prognosis.
Becoming a GEM Club donor today will help us add new sites to the network!
