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 Children  Uganda Project #35580

Improve Quality Childhood Cancer Care in Uganda

by The International Network for Cancer Treatment and Research (INCTR)
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Edmond with his Dad and a Volunteer
Edmond with his Dad and a Volunteer

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!

Brian with His Sister and Volunteers
Brian with His Sister and Volunteers

Brian was 15 years old when he was first admitted to the pediatric oncology ward at St Mary’s Hospital Lacor in March of 2018. His right foot started swelling in June of 2017 – some 9 months before he came to St Mary’s.   The swelling was initially small and painless, but then it became progressively larger and increasingly more painful. And, Brian became unable to walk.

Due to the severe damage to his bone caused by this mass, it was not considered possible to save his lower leg. Therefore, Brian underwent a below the knee amputation of his right leg. When the mass was biopsied, it revealed that Brian had rhabdomyosarcoma. He was started on chemotherapy three weeks after his surgery. This therapy consisted of vincristine, actinomycin and cyclophosphamide (VAC) with alternating cycles of vincristine for a total of 40 weeks. He tolerated treatment very well and completed all planned chemotherapy in December, 2018. He is presently in remission.

Because of the great distance between his home and St Mary’s and the short intervals between treatment cycles, Brian stayed in the hospital's Family Home for the duration of his chemotherapy. His parents are subsistence farmers. This meant that they had to make a difficult choice – to lose the family’s income for nearly a year or to continue to work in order to support their five children. Although his parents chose to return home to work, Brian’s little sister stayed with him so that he would not have to be at the hospital without support from a family member. During his stay at St Mary's, Brian was able to continue with school by attending the Rainbow Family Home School. He learned English which he speaks very well, according to his teacher.

Brian returns to the hospital for regular post-treatment check-ups to ensure that he remains in remission.  At the time of his most recent follow up visit, he was fitted with a prosthetic leg. 

In high income countries such as the USA, it is unlikely that Brian would have come to the hospital with such advanced disease. But, in northern Uganda, there is a lack of specialized hospitals that are capable of diagnosing and treating children with cancer.  Brian and his parents had to travel a great distance from their home in order for Brian to receive appropriate care. And, due to his family's financial circumstances, his parents had to leave Brian at the hospital for the majority of his treatment while they returned home to work.

Your donations made it possible for Brian to receive free treatment, including the necessary rehabilitation following the completion of his treatment. Your donations also made it possible for Brian to continue his education while he was away from home for such a long time. Thank you for your generous support for this project which helps children like Brian!

Joseph with his Uncle
Joseph with his Uncle

In 2016, when Joseph was eleven years old, he began to feel unwell at school.  He soon developed swelling in his cheek and started to experience stomach pain.  He was taken out of school and his parents sought medical attention for their son from a nearby health facility. Unfortunately, Joseph’s condition worsened.  He was then referred to Mbale Regional Hospital in eastern Uganda that was a more than two-hour journey from his home.  This hospital was unable to establish a diagnosis.  A neighbour advised Joseph’s parents to bring him to St Mary’s Hospital Lacor in Gulu.    

Because his parents’ income was derived from farming, it took them some time to arrange the finances necessary to pay for the very long journey to St Mary’s.  Once at St Mary’s, Joseph underwent a biopsy which revealed that he had Burkitt lymphoma (BL).  He began treatment in August, 2016, but did not complete treatment until June of 2017.  By this time, Joseph was in the care of his uncle because his parents, who had six other young children, needed to return home and remain there for prolonged periods and this resulted in delays in Joseph’s treatment.    

In September, 2017, he developed what was believed to be a recurrence of his BL and underwent a repeat biopsy.  The biopsy showed that he did not have BL, but had a different cancer called rhabdomyosarcoma.  He began appropriate chemotherapy for this cancer.  In addition to chemotherapy, he needed to have radiation therapy.  Because St Mary’s could not provide this type of treatment, Joseph and his uncle had to travel to another hospital in Kampala in order for him to have radiotherapy.  After two months, his radiotherapy was finished and he returned to St Mary’s to complete his chemotherapy.  By this time, it was October, 2018.  Joseph and his uncle were very fortunate to have had the necessary support provided to them by the Rainbow Family Home, including meals, accommodation, financial assistance with travel to and from the hospital – including to Kampala - and psychological support.  When the Rainbow Family Home School opened in early 2018, Joseph, who had been away from school for so long, was able to resume his studies. His uncle attended skill-building courses offered to parents and guardians and he provided emotional support to many other patients and their families.      

There are important lessons to be learned from Joseph’s story.  At the time that he was initially diagnosed with BL, St Mary’s did not have a full-time pathologist on staff. But, at the time of his suspected BL recurrence, St Mary’s had a qualified pathologist who had been trained to do more sophisticated tests on suspected cases of childhood cancer.  Therefore, the newly appointed pathologist was able to ensure that the diagnosis given was accurate and could confirm what the doctors caring for him thought – that he never did have BL.  In poor countries, such as Uganda, a misdiagnosis means that a child may receive the wrong therapy and as a result, have a worse outcome, let alone have needless exposure to treatments that may have both short and long-term health consequences.  The initial misdiagnosis also added extra costs related to his overall care and this boy spent nearly two years away from home and school.    

Your donations to this project help children suspected of having cancer to receive an accurate diagnosis.  And, if a diagnosis of cancer is made, children are able to have access to free treatment, financial support for other costs – such as food, accommodation, transportation costs, and as of early 2018, the ability to continue with their education during prolonged treatments such as what Joseph underwent.  Thank you so much for your support.

The Rainbow Family Home School
The Rainbow Family Home School

On a visit to St Mary’s Hospital Lacor in Gulu, Uganda in 2017, many children with cancer told me how much they missed being away from school and their friends. Their parents said that their children were falling behind due to prolonged and frequent absences from school.  Some children were sad because they could not keep up in school with other children their own age when they returned home.  Because children should be able to continue with their education while undergoing treatment for cancer when they are well enough, INCTR decided to provide the support for a teacher for these children.

Joyce was appointed as the teacher for the children at St Mary’s Hospital in early 2018.  She opened the Rainbow Family School Home at the Family Home for children with cancer and their parents which is located on the grounds of St Mary's Hospital.  The main goal of the school's educational program is to enable the children to cope with life while undergoing treatment through educational activities. The elements of this program include reading, writing, mathematics, health, social studies and basic English. 

An example of how school can help a child with cancer is the story of Emmanuel.  He is 12 years old and is undergoing treatment for Burkitt lymphoma.  When he initially started at the Rainbow Family Home School, his skills in writing and math had deficiencies.  Because he was very shy, he had difficulty asking questions or answering questions asked of him.  However, he kept attending classes and gradually built up enough self-confidence so that he is now able to actively participate in classes with the other children. His skills in writing and spelling have improved and he is able to speak and understand simple English.  When asked about his dreams for the future, he said that he would like to become a doctor so that he can help children with cancer.   

Because of the generous donations you have made to this project, the Rainbow Family Home School can continue to help children with cancer like Emmanuel.  The school provides the children with their own community that not only includes learning, but social and recreational activities as well.  Thank you for your donations!  They help to improve the quality of lives of children with cancer at St Mary’s Hospital Lacor! 


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Project Leader:
Melissa Adde
Brussels, Belgium
$10,226 raised of $75,000 goal
80 donations
$64,774 to go
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