Jun 4, 2019

Brian's Successful Treatment for Rhabdomyosarcoma

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!

May 3, 2019

Permanent Blindness Avoided by Prompt Treatment

Faith After Two Cycles of Therapy
Faith After Two Cycles of Therapy

Faith is a 10-year old Ugandan girl who developed swelling of her left eye.  She had no prior history of any major illnesses and had not suffered any trauma to her eye. The swelling was initially small, but progressively increased in size and became quite painful. When the swelling of her eye first began, her parents took her to a nearby health center where she was prescribed eye drops that did not stop the swelling. Her parents then took her to a nearby hospital.  The doctors there referred her to St Mary’s Hospital Lacor in Gulu for evaluation. 

Faith was admitted to St Mary’s in early February – some three weeks from the start of the problems with her eye.  Upon examination, her left eye was protruding out of the socket and she could not move her eye in a normal way.  By this time, she had also lost the vision in this eye.  Her lower eyelid was extremely swollen.  The mass was very large and occupied her upper jaw as well.  Due to the history of the rapid growth of this mass, it was suspected that Faith had Burkitt lymphoma. A biopsy was performed which confirmed this diagnosis.  Thankfully, all of the other tests to determine if she had sites of disease in other parts of her body were negative.

Faith was started on the INCTR treatment protocol for Burkitt lymphoma which consists of six cycles of chemotherapy.  She had a dramatic response to the first cycle of treatment. After this cycle, her eye was no longer protruding and the vision in that eye returned to normal. Following the second cycle, all of the remaining swelling in her eye and jaw had resolved completely. There were no residual effects caused by this large tumor that had compressed vital nerves that control eye sight and movement. She is presently in remission and is finishing up her last cycle of therapy. Because of the long distance from her home in the Kiryadongo district to St Mary’s in Gulu, she has been staying at the hospital’s family home during treatment. She is looking forward to returning home to see her siblings and her friends and to going back to school very soon.

Faith is very lucky that she was referred to St Mary promptly. Faith could have suffered permanent blindness if she had not been treated as soon as she was. Other children with Burkitt lymphoma may not be so fortunate because they experience delays in reaching a hospital like St Mary's which is capable of treating children with cancer. One of the most common reasons for delays is due to the great distances that families must travel and the costs that are associated with their journeys to reach a specialty hospital. Since the majority of families are very poor, it takes them time to gather the necessary funds to cover these costs. Because of your generous donations to this project, Faith and other children with Burkitt lymphoma, receive this necessary support for travel and are able to be diagnosed and treated for free. Thank you again for your donations!    

Mar 6, 2019

The Importance of an Accurate Diagnosis

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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