By Melissa Adde | Project Leader, INCTR
Jane was 9 years old when she first came to St Mary’s Hospital Lacor in March of 2015. When she initially arrived at the hospital, she presented with kidney and ovarian involvement. A biopsy was performed and it confirmed that she had Burkitt lymphoma. Ovarian disease in young girls such as Jane is not uncommon.
She was started on first line therapy and completed this by the end of June of 2015. Jane achieved a complete response. Unfortunately, when she came for her first follow up visit, she was found to have recurrent disease. Because of this early relapse, she was started on the second line treatment that includes different drugs from the first line therapy. She completed four cycles of second line therapy by the end of 2015 and again had a complete response. But again, Jane suffered a relapse and was treated with additional cycles of chemotherapy. She was well for a period of 5 months until November 2016 when she returned to Lacor Hospital with an orbital mass and multiple abdominal masses. She was again re-treated, but the response to treatment was only transient. Thereafter, this became a pattern for Jane – complete responses followed by nearly immediate recurrences - her last being in June 2017. She was re-treated then, but it was clear that the continual cycles of chemotherapy were taking their toll. Jane would say that she was “tired of being pricked” by needles. She said that some procedures were too painful and expressed, “I wish I could rest from all of these pains”. To be sure that Jane’s original diagnosis was correct and that the treatment approaches were appropriate, she underwent a biopsy that verified her initial diagnosis. She was observed frequently and allowed to return home briefly. The last time she returned to the hospital, she was gravely ill. Jane and her parents wanted to try more treatment. Sadly, Jane died before additional treatment could be started. She had just turned 12 years old shortly before her death, having spent a significant part of the last three years of her life at Lacor Hospital. The pattern of Jane’s rapid response to therapy followed by recurrent disease was difficult for the staff to understand and manage. But, it is not unknown that a child with African Burkitt lymphoma can survive – even after multiple relapses. Unfortunately, Jane could not be one of these children.
Jane should be remembered for what she gave to others at the hospital. She endeared herself to so many people- other children with cancer, their families and the staff. She taught the alphabet to very young children at the hospital. She knew English sufficiently well so that she could serve as a translator for parents and children. She loved all activities – singing, dancing and drawing. Her death had a profound effect on not only her family, but other parents, older children and the staff as well. Following her death, all of the parents accompanied her body to the hospital mortuary in tribute to her. Jane left a very great hole in so many hearts and she will not be forgotten.
While Jane’s story is very sad, Jane and her family always maintained their hopes for Jane to eventually be cured. This is thanks to your generous donations. Children with Burkitt lymphoma, particularly, in sub-Saharan Africa may not always have a happy ending. At this time, we do not know the actual number of children with Burkitt lymphoma in Uganda since many children with this cancer, which grows so rapidly, may die before they ever reach a hospital capable of treating them. We must also take into consideration the feelings of parents who do not wish to lose a child and of the child who does not want to die. We thank all of you who have donated to this project because your generosity has given the support and hope that the children with Burkitt lymphoma and their parents so desperately need.
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