Oct 30, 2019

A Brave Eleven Year Old Girl

Robinah After Treatment
Robinah After Treatment

Robinah was 11 years old when she came to St Mary’s Hospital Lacor in Gulu, Uganda. She came to the hospital in April of 2019 and was accompanied by her 16 year old brother. They had lost both of their parents. Their uncle, who provides for them, is a subsistence farmer and could not take the time away from work to bring her to the hospital. Therefore, Robinah and her brother had to make the hazardous journey from their village to St Mary’s alone. Their journey took a very long time because good roads were not easily accessible and transportation services were unreliable.     

Robinah had an approximately one-year history of jaw swelling. Because it was painless, the family did not seek health care. About four months prior to admission, she developed abdominal swelling which progressively worsened. Not long after her abdomen swelled, she developed swelling of her lower limbs and started to have difficulty in breathing. It was then that the family began to mobilize the funds necessary to pay for her transportation to St Mary’s.

Upon admission to the hospital, she had very advanced disease. Not only did she have facial swelling, but she also had wide-spread disease throughout her abdomen. Fluid surrounded both her heart and lungs. A biopsy was performed that confirmed the suspected diagnosis of Burkitt lymphoma. She was promptly started on treatment and rapidly improved. She was able to breathe more easily and her facial swelling became smaller. The staff could see how happy she was. Her brother, who never left her side, was visibly relieved.

After the second cycle of therapy, Robinah was doing so well that she asked if she could go back home so that her brother could continue school. Because the team at St Mary’s was unsure that she would be able to return to complete all six cycles of planned chemotherapy, they called her uncle to obtain his permission to let Robinah stay at the hospital’s family home and informed him that her best chance for a long-term cure was to complete all planned treatment without unnecessary interruptions related to long-distance travel. Her uncle was assured that she would be well taken care of and he agreed to let her stay at the family home during the remainder of her therapy. Her brother then returned home to go back to school.     

The family home was vital to Robinah’s successful outcome. While staying there, she found a second family that supported her. She was excited to have the opportunity to continue with her own education through the school based at the family home. This was important to her because she had missed school for nearly a year prior to her admission to the hospital.   She completed all treatment and presently has no evidence of Burkitt lymphoma.

With your generous contributions to this project, children who are very poor and need support to cover the costs of treatment, including food and accommodation, can be helped. Your donations ensure that a young child with Burkitt lymphoma has the best chance for cure. Thank you again for your support!

Sep 3, 2019

Appearances Can be Deceiving

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!

Aug 2, 2019

A Classic Presentation of Burkitt Lymphoma

Guido After Two Cycles of Treatment
Guido After Two Cycles of Treatment

After experiencing a week-long history of a rapidly growing mass in the right side of his face, Guido’s parents brought their five-year old son to St Mary’s Hospital Lacor in Gulu, Uganda.

Upon admission to St Mary’s, Guido’s face appeared deformed due to a very large mass on the right side of his face that extended from his upper to lower jaw. He was in pain and had great difficulty in swallowing such that he could barely drink, let alone eat. Inside of his mouth, his teeth were loose and displaced. Given the classical features of the mass and its very rapid growth, the doctors suspected that he had Burkitt lymphoma. Guido underwent a biopsy of the mass and had other tests performed. The biopsy confirmed that he had Burkitt lymphoma. Fortunately, the tumor had not spread to other parts of his body.

Guido was started on chemotherapy as soon as possible and after two cycles of therapy, he no longer had any visible signs of his jaw mass and his face was normal in appearance. He has continued with therapy. This has been a challenge for his parents. They are subsistence farmers and have seven other children to care for at home which is a very long distance from St Mary’s. His mother has remained with Guido throughout treatment, including the times when he is in-between treatment cycles. Although, Guido’s tumor visibly disappeared very rapidly, his parents understood that their son must complete all planned treatment (a total of six cycles of chemotherapy) to ensure that he has the best possible chance of achieving a long-term cure.

Guido and his mother were able to stay at the hospital’s Rainbow Family Home. At the home, he has been helped to overcome his initial sadness and shyness which were largely due to the disfigurement of his face caused by the tumor. Now, that his mass is gone, he is a much happier little boy. He participates in social activities with other children and enjoys attending the Rainbow Family Home School.

A rapidly growing jaw mass in a five-year old who lives in equatorial Africa is a very classical presentation of Burkitt lymphoma. A major factor in whether or not a child survives this highly curable cancer is access to a hospital capable of diagnosing and treating them. Parents dependent upon seasonal farming work and with other children to care for at home find it financially very difficult to pay for treatment and for other expenses associated with being away from home for prolonged periods of time.     

Your generous donations to this project help us to provide not only the necessary treatment, but also other types of support that children with Burkitt lymphoma and their families need. Thank you!

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