Gladness Lusana, is a 5year old little girl with a huge personality and an inspiring drive to overcome any challenge thrown at her. She is from the small Northern town of Sengerema by the shores of Lake Victoria. This is where one of our busiest outreach centre is based and run by the living legend who is Sr Marie Jose Voeten.
When she arrived at Sengerema hospital she was already extremely unwell – she struggled to breath, her entire body was swollen – most worryingly was that her face seemed very puffy – which often means that circulation to the head might be critically compromised. We were worried her little heart might stop at any moment. Sr Marie Jose started emergency chemotherapy for a presumed diagnosis of a lymphoma called Burkitt’s Lymphoma which commonly presents in this way in Tanzania. The treatment had little effect but she did not seem to deteriorate further. Her biopsy report surprised us all. She had a disease which
is commonly associated with HIV positive patients called Kaposi’s Sarcoma, KS for short. But she was and remains HIV negative. We transferred Gladness to Muhimbili National Hospital in Dar es salaam and with the correct diagnosis started her on first line KS treatment. We were really disappointed to find it made little impact on her swellings though again they did not get worse. However, the entire staff fell in love with this child as regardless of how sick and frail she looked, Gladness could regularly be found marching around the ward and out to our little classroom determined not to miss any fun!
This delightful little whirlwind was diagnosed to have the most extensive KS we know, involving her Lymph nodes, the organs in her tummy, her lungs and her bone marrow. At this point we were worried and consulted our friends and colleagues based in Mbeya Hospital in the South of Tanzania – Dr Liane and the Baylor Team of HIV experts. Under their guidance we started second line treatment – which also proved inadequate as one final effort and with everyone
beginning to lose hope Dr Liane suggested increasing the dose and frequency of the second-line medication which is not something we had ever done before with a real risk of severe toxicity. And finally…… the disease retreated and Gladness showed us once again how tough and resilient she truly is – every day she is smiling and happy and inspiring us all with her determined little nature.
Her story outlines perfectly the power of the National Children’s Cancer Network with 3 sites 2000km apart working together to fight for a single unique young life. So proud of and grateful to everyone involved in Gladness’ story so far.