Improve Quality Childhood Cancer Care in Uganda

In early 2018, Joyce was appointed as the teacher for children with cancer who undergo treatment at St Mary’s Hospital Lacor in Gulu, Uganda. She opened the Rainbow Family Home School within the premises of the Family Home that is located on the hospital’s grounds. As INCTR previously reported, the main goal of the educational program for the children is to enable them to cope with life while undergoing cancer treatment.  The main elements of the curriculum include reading, writing, mathematics, social studies, health and basic English. Recreational and social activities are also major components of the program.

When Joyce began, it was not easy because the children spoke in many local languages and some, although of school-age, had never been in a formal classroom before. One of her earlier decisions was to teach the children in one common language – English. She found that children – of all ages – were eager to learn and many who had missed going to school were more than happy to have the opportunity to keep up with school while away from home.  This was also important to their parents who did not want their children to fall behind other children of the same age.    

Children with some types of cancer, such as Burkitt lymphoma, often present with disfiguring tumors in the facial region. While this cancer rapidly responds to treatment, it can take some time for abnormalities to completely resolve. At the Rainbow Family Home School, the children find that they fit in. Their shyness about their appearances quickly disappear because their fellow students and Joyce warmly welcome them.

The school provides a friendly environment for children to learn and to have emotional support they need - from Joyce and from other children suffering from cancer. Children often need to stay at the Family Home for prolonged periods of time during treatment. The reasons vary from patient to patient, but the most common reason is the long distance and/or the unreliability of transportation (including costs) from home to the hospital that inevitably lead to unnecessary disruptions in or abandonment of treatment when parents wish to return home in-between their child’s treatment cycles to care for their other children and to resume work to sustain their families.  

It should be noted that when the school was opened, St Mary’s management team and staff considered it an “experiment” and were sceptical about it being successful. Their opinions rapidly changed. The Institutional Director recently wrote to say; “The teacher is doing a great job. I see faces of happiness and without INCTR, I would not have envisaged how useful this venture would be”.

Thanks to everyone who has donated so generously to this project. Your donations mean that children with cancer treated at St Mary's have the opportunity to keep up with school and to have recreational and social activities that improve the quality of their lives while undergoing treatment.  

Edmond was 6 years old when he came to St Mary’s Hospital Lacor in Gulu, Uganda in late 2017. His father had noted a swelling in Edmond’s left cheek that had begun about a month prior to his admission to St Mary’s. The swelling was painful and caused the loss of two teeth. Although he was initially managed at home with pain medication, there was only minimal improvement and he soon developed a swelling in his right cheek. He also had difficulty eating.

Edmond underwent a full examination that included a biopsy of the mass in his jaw. Because of the jaw swellings, which are classical features of Burkitt lymphoma, he was started on treatment for this cancer. After the first two cycles of therapy, he had no improvement. At this point in time, a complete and final pathology report came back which included the results of special tests performed on the pre-treatment biopsy sample. The final diagnosis was rhabdomyosarcoma. Rhabdomyosarcoma can have similar clinical features to Burkitt lymphoma in younger children. Edmond was switched to the appropriate therapy for rhabdomyosarcoma. He completed treatment in early 2019 and is currently free of cancer.  He returns for regular for post-treatment check-ups at the hospital.

Because Burkitt lymphoma accounts for nearly 50% of childhood cancers in equatorial Africa, many hospitals in this region of Africa start treatment based upon what is often called a “clinical diagnosis”.  Sometimes hospitals do not have pathology departments or the capacity to perform biopsies.  Even if a hospital has the capacity to perform a biopsy on a child with suspected cancer, they may not have a staff pathologist.  In these situations, doctors need to send the samples to another hospital in order to obtain the diagnosis.  This process can be lengthy.  It is well known that Burkitt lymphoma is a rapidly growing cancer and is fatal if not treated promptly.  Therefore, doctors make the decision to treat a child with therapy for Burkitt lymphoma, in the absence of a confirmed diagnosis, in order to try to save the child’s life.  Even if a hospital has a pathologist on staff, the pathologist may only be able to examine the appearance of the cells taken from the biopsy of the tumor and may not be able to perform special tests that are often required to make a more precise diagnosis.  Furthermore, the resources to perform these tests are often cost-prohibitive for many hospitals.  Pathologists are often in short supply in many regions within sub-Saharan Africa.  When a pathologist is on educational or personal leave, gaps in services occur which result in delays in diagnoses for children with suspected cancer.

Unfortunately, clinical diagnoses can have consequences for children and their families. The children receive, often at their families’ expense, incorrect therapy and suffer what are thought to be relapses of a cancer that they never had.  In Edmond’s case, he was very lucky to have dedicated doctors who recognized that he was not improving on Burkitt lymphoma therapy.  The doctors were fortunate to have a staff pathologist capable of making an accurate diagnosis based upon specialized tests so that Edmond’s treatment could be changed. 

We wish to thank everyone who has generously supported this project.  Your donations ensure that St Mary’s Hospital receives the necessary resources for improving the accuracy of diagnoses made in children suspected of having cancer and that the children receive support for the costs of treatment.  Thank you!