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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
Raphaella and her Mother
Raphaella and her Mother

Raphaella came to our hospital, St Mary’s Hospital Lacor in Gulu, in November of 2018 when her father decided to bring her to us because she was not improving with treatment given to her by their local health center. The doctors at the health center thought that Raphaella had a hyperactive malaria syndrome and treated her with anti-malarial drugs for many months.

Her father explained that Raphaella had a 7 month history of progressive abdominal distention that was associated with pain, intermittent fevers, and weight loss. Two weeks prior to admission, she developed chest pain associated with a cough. Further complicating her problems was that Raphaella had known epilepsy which was not properly controlled – her parents could not afford the costs of transportation to obtain the necessary drugs to treat this condition.

Upon admission, Raphaella was very sick. She had a grossly distended abdomen and was severely malnourished. We immediately began tests and found that she had an enlarged left kidney and that disease had spread to her spleen, liver, and lungs. A biopsy was performed which confirmed our suspected diagnosis of Wilms tumor – a type of childhood cancer that arises in the kidney. In our setting, Wilms is treated with pre-operative chemotherapy before we surgically remove the affected kidney (nephrectomy). A nephrectomy, which is a necessary part of treatment for Wilms tumor, is followed by post-operative chemotherapy for a period of time. We were heartened that after 8 weeks of pre-operative chemotherapy, the lesions in her liver, spleen and lungs had completely resolved. She, then, underwent a successful removal of her left kidney.  Unfortunately, Raphaella developed several post-operative complications and required two more surgeries, including a colostomy.  This meant that we had to delay her post-operative chemotherapy for nearly 8 weeks to allow her to recover from these extra surgeries.

Once Raphaella started post-op chemotherapy, she suffered all of the challenges associated with the known side effects of the drugs used. At one point, she developed such a severe infection due to her low levels of infection fighting white blood cells that she nearly lost her life. But, Raphaella was such a fighter and she survived. She stayed at the hospital’s Family Home during treatment to ensure that we could deliver chemotherapy on time and monitor her closely so that we could intervene promptly when treatment-related complications arose. Raphaella completed all chemotherapy in October 2019. We are pleased to report that she is free of cancer and that we were able to close her colostomy. With appropriate anti-seizure medications, her epilepsy is now well-controlled. She returns to St Mary’s for regular follow-up visits.

Raphaella’s story reminds me how necessary it is to improve and intensify public and health workers’ awareness about the signs and symptoms of childhood cancer at the community level so that referrals of children with suspected cancers can be made as quickly as possible.

It also taught me that children with cancer - no matter how extensive their disease is at presentation – deserve the opportunity to have the correct treatment and to be given the chance to live. Therefore, I would like to thank everyone who donates to this project because your support makes it possible for St Mary’s to accurately diagnose and treat children like Raphaella.  

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Children Enjoying Activities at School
Children Enjoying Activities at School

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.  

 

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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!

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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!

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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.

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Project Leader:
Melissa Adde
Brussels, Belgium
$15,846 raised of $75,000 goal
 
107 donations
$59,154 to go
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