Mama Setoni Amainge is from a Maasai Warrior tribe from Mtambo which is located past Arusha and is near Karato.
Mama Setoni’s little boy, Leikibai Pai Manywele had been very ill for a few weeks. She first started noticing her little boy had a swelling on the left side of his face which was there for two weeks, then in the third week the eye on the same side starting to protrude. The little boy also then started experiencing problems with walking. Mama Setoni started to become very worried for her little boy.
Mama Setoni went to Selyan Hospital (where she normally goes when family members are ill) to see Dr Mohammed.
After checking the child, Dr Mohammed referred them to Muhimbili Hospital. Mama Setoni stayed in Arusha for one day, and then started her long journey to Dar Es Salaam by bus with her sister. Luckily they had left home with sufficient funds so the trip was fine, the only setback was her little boy was very ill throughout the journey.
When Leikibai reached Muhimbili Hospital he had become increasingly worse. He was seen by Dr. Trish and was diagnosed as having Burkitts Lymphoma. He could not pass urine normally, could not eat, nor walk properly, and was throwing up. He was admitted to the Upendo ward, which is the Intensive Care Ward at Muhimbili Hospital.
Mama Setoni did not fully understand the treatment the doctors administered to her son. She says she knows there were injections, but does not know how many or what they were for. But once he began treatment she slowly began to see her son get better and even begin to smile again
She says her son was given a tube to help him pass urine, and as a result has become better compared to his initial condition. He is not throwing up and can walk better although still he is still experiencing some difficulties.
As his mama she feels bad and her heart is not happy when her son is ill. However, he is now smiling and happier and he feels better, and she gets happier and feels better as a result. They are due to stay on the ward for another few months in order for him to fully get better.
I am a doctor caring for children with Burkitt lymphoma in Vanga in the Democratic Republic of Congo. After a short break in Germany, I returned to Vanga in early January. One of my first questions was - how are our BL kids doing? Nina was just finishing her 6th cycle of chemotherapy. When I left for my break, she was quite sick. I found her in a health center 60 kilometers away from Vanga and she was barely breathing and had huge swellings on both sides of her face. All of us at the hospital wondered if she would live. She made it! Now, she is smiling and running around playing. Other children with BL came to the hospital and we had 6 of these children in one room. Two were very sick. One boy was permanently blind from disease affecting the nerve that provides vision. And, an 11 year boy had a huge abdominal mass. We asked ourselves, how will these two boys tolerate the first cycle of treatment? We were afraid that the boy with the big abdominal mass who so sick and so weak in his bed might die of complications caused by the tumor breaking down once chemotherapy started. Could the child who was blind tolerate treatment needed to further prevent the spread of disease to his central nervous system? But, both Jona and Kalala came through the first cycle – although they suffered a lot during those first few days of treatment. But, slowly and surely things changed. Jona told me one morning, “I want to go fishing”. So, I asked him, “Oh, do you really want to go fishing?” What a miracle that his wish came true a few days later when Jona went fishing at the nice Kwilu River near the Vanga Hospital. Kalala, even though he is blind, started to entertain the entire Vanga Hospital pediatric ward by singing and playing his homemade guitar. He even taught Modia, another child suffering and recovering from BL to play the guitar. Because these children shared one room, had the same diagnosis and treatment – and being about the same age, they have all become friends. Just like other children, they play and dance together, try to find out who is the strongest of the six, and even share meals together.
It was a pleasure to return to Vanga Hospital to witness this – the return to life for these children who I feared would die.
My staff and I are so glad to be able to help children like these and to see that wonderful things can happen for children with Burkitt lymphoma in Vanga, a faraway place in the bush of the Congo.
INCTR’s project to provide treatment for children with Burkitt lymphoma in Africa is moving forward at a rapid rate. We have treated approximately 30 children since the campaign began, and the majority of them are doing well. Doctors and nurses continue to become more familiar with all aspects of the diagnosis and care of these patients, who can be very sick indeed when they reach the hospital.
Little Kigongo (name changed for privacy purposes), for example, had a huge tumor involving her lower jaw when she reached the hospital, and could not eat any solid food. Within a few days (see picture) her tumor had melted away, and she was able to eat again. Her mother was overjoyed to see her playing with the other children again.
Unfortunately, most children with Burkitt lymphoma never reach a hospital, and we are trying to develop ways in which we can ensure that more have access to treatment by health professionals with the necessary knowledge to save the lives of patients like Kigongo. Please continue to give generously to the Kigongo’s of this world, who, without your help, would die a miserable, excruciating death, but with it, can live a normal life and even have children of their own.
Thank you all for your support!
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