By Melissa Adde | Project Leader, INCTR
David was 10 years old when he was first admitted to St Mary’s Hospital Lacor in Gulu, Uganda in March, 2013. He came from a rural village in the Kole District which is about two and half hours away from the hospital – depending upon the access to good roads and the availability of transportation services. Both of his parents were peasant farmers and they had five other children to care for.
Upon admission, David and his parents reported that he had a five-month history of abdominal pain and swelling that was accompanied by fatigue. An abdominal ultrasound examination was performed which showed diffuse intra-abdominal involvement. He, then, underwent a biopsy of his abdominal mass that confirmed the suspected diagnosis of Burkitt lymphoma.
He was started on the first-line treatment protocol for Burkitt lymphoma. A total of six cycles of chemotherapy was planned. David tolerated therapy well, but he experienced delays of more than one week due to low numbers of infection fighting white blood cells. His parents requested a temporary discharge from the hospital after the 4th cycle which resulted in an even longer delay in starting the 5th cycle. He stayed at the hospital to ensure that he received his 6th and last cycle of therapy on time. He achieved a complete response to therapy with no evidence of abdominal disease after the 3rd cycle of treatment and again, at the end of treatment. He was then discharged home. This was in July of 2013.
He wasn’t seen at the hospital following his treatment. We know that relapse after treatment is rare in children with Burkitt lymphoma after one year has passed. But, David was not been seen during this critical first year. Therefore, it was unknown what had happened to David. We could only speculate. Sometimes, when a child does not return, it is because their cancer has come back and the family choose not to pursue further treatment. Sometimes, families move to other villages without giving forwarding information to the hospital or their neighbors. As time goes by, it becomes more difficult to trace a child like David. But, his parents were contacted recently. It was a pleasant surprise to learn that David, who is now 15 years old, was very healthy and attending school. When asked why they had not returned to the hospital, they said that because David was so well that they did not think it was necessary to make the journey to the hospital and they did not want to bother the staff because they were so busy with sick children. While David’s story had a happy outcome, it is important that parents are educated about the need for their children to be followed up for tumor recurrence, particularly in the first year after treatment since this is the highest risk period for relapse.
Through your generous donations, David had access to free treatment. Because of the generosity of the many donors who have supported this project, we felt obliged to find out what had happened to David and to other children like him who seem lost, but can be found. This is also necessary so that we can report the results of this project with certainty. Thank you again for your continued support!
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