Bernard was brought to the pediatric ward at St Mary’s Hospital Lacor on a very busy day in May, 2014. We were making our ward rounds to check on all of the children. The scene was very chaotic – the patients were hugging their mothers, others were lining up waiting to be seen by the doctors, other children were waiting to receive their chemotherapy and some of the children were playing while waiting for orders to be discharged. Suddenly, a young man came onto the ward carrying four year old Bernard who was wrapped in a blanket and dropped him on a bed. Bernard was in desperate need of medical care and all things were put to one side so that he could be assessed immediately.
Bernard was shivering and barely conscious. He was very malnourished. He had generalized swelling all over his body - his abdomen was very distended and his face was deformed by large jaw masses on both sides of his face and swelling of the orbits of his eyes such that his eyes could not even be seen. He was paralyzed. Additionally, he had many ulcers in his legs and also one on his back that was so deep that we could see the surface of his bones. These were also infected. We worked him up as quickly as possible to prepare him for treatment for suspected Burkitt lymphoma.
The young man who brought Bernard to us was asked questions by a nurse about how he came to be in such a condition. We learned that Bernard had been living with relatives in a village in a very remote rural area. After his father had died, his mother had re-married, but her new husband would not allow her to keep Bernard once she became pregnant with his child. Bernard was then sent to live with his father’s relatives. The young man who brought him to St Mary’s was his older brother. He was told by the relatives that Bernard was dying so he went to see him, but he did not want to give up hope for his younger brother. He took Bernard to our hospital on his motorcycle and they had to travel a long distance before reaching our hospital.
Once Bernard was stabilized and his diagnosis was confirmed as Burkitt lymphoma, we started chemotherapy. We had to reduce the initial doses of chemotherapy given to him because of his poor kidney function. We monitored him very closely before and after we started treatment – knowing any let up in surveillance could result in complete renal failure and death. Even with all of these precautions, we were not sure if we could save little Bernard. Within a few days of starting treatment, the swelling all over his body began to decrease as did the masses in his abdomen. When the swelling in his face caused by the tumors in his jaws and in the orbits of his eyes disappeared, we learned that Bernard was blind from the pressure that his disease put on the nerve that controls vision. He also started to become more alert, but one mystery we were unable to readily solve was that Bernard could not stop crying. He would not talk to us, he would only cry. Because people from other regions in Uganda speak different languages, we were lucky to have a nurse who could speak his language. It became clear to us that he wasn’t in pain, but being blind and paralyzed, he was scared and all he wanted was his mother.
Through generous donations made to this project, we located his mother and provided the funding for her to come to St Mary’s Hospital to be with her little boy. When she came, Bernard stopped crying – her voice and her touch comforted this very frightened little boy.
Bernard stayed with us at the hospital for the entire duration of his treatment and a bit longer to allow the pressure sores to heal completely and to receive physical therapy. In spite of his very advanced disease and all the complications he faced, he responded to treatment very well and gained weight. He could even sit without support and was able to feed himself again. He started to see some shadows and lights, but he never regained the use of his legs – the damage caused by the tumor was irreparable. He liked to hear music being played on a radio which made us all happy.
Just this month, Bernard came back to us for a follow up visit. He was in complete remission at one year from the start of his initial treatment – relapses are extremely rare after this time. Sadly, Bernard was not able to return to live with his mother, but with support, his brother and his wife took Bernard to live with them and he is cared for very well.
A child such as Bernard who was extremely poor was able to be treated for free thanks to generous donations made to this project. But, his story taught us that we need to be able to do more to prevent children from coming to us with such advanced disease by educating people in the rural villages about the signs of this highly curable cancer. It brought home to us that there are many social factors that can impact any sick child such as living with distant relatives with no financial means for transportation to a far away hospital and other children to care and provide for. Without his brother’s intervention, Bernard would surely have died. If Bernard had been brought to us sooner, he probably would be walking and playing like any other 5 year old boy. But, in spite of everything, Bernard is happy and free of cancer.
Because we are able to provide free treatment through generous donations made to this project, we can also focus on the other needs these very poor families of children with Burkitt lymphoma have. Thanks to all of you who have given and continue to give to this project!