At the beginning of July 2022, Emanuel developed symptoms of cancer. He initially complained of pain and swelling in the right cheek. At the time, he was 10 years old and living with both of his parents in a village in the Maracha District of Uganda. His parents took him to a nearby clinic. He was referred to the Kiryandongo Hospital (KH) where he was admitted and treated for one week. The team at the KH suspected a childhood cancer and referred Emmanuel to our hospital, St. Mary’s Hospital Lacor in the Gulu District of Uganda which is a very long drive from KH (distance, 145 kilometers). Due to financial constraints, the parents took Emanuel home instead of to St. Mary’s. Once home, he was taken to a traditional healer to receive treatment since the family members strongly believed that his condition was a result of witchcraft. The traditional healer told the family that Emmanuel was used by an individual for ritual purposes. His treatment by the healer was going to cost the family 310,000 Ugandan shillings, one live goat, and a sheep to slaughter to eliminate the powers of “witchcraft” affecting him.
When Emmanuel’s grandfather, Eliya, heard about the child’s condition, he visited him at the healer’s shrine and demanded that the traditional healer immediately release his grandson so that he could take him for appropriate medical care. The traditional healer refused to do so unless his fees were paid. The grandfather rejected the healer’s demand due to his strong religious beliefs. To secure Emmanuel’s release, his mother paid the money and gave the healer the goat and the sheep. Then the healer set Emmanuel free.
On August 31st, 2022, Emmanuel was taken to a clinic in Maracha where the health worker suspected cancer and immediately referred him to St. Mary’s for cancer diagnosis and treatment. The family was not able to provide the necessary funds for transport and other upkeep. Our hospital was informed about the financial problems and we made the necessary arrangements to organize everything for him – transport, local accommodation, and food. When he arrived at St. Mary’s, he was promptly admitted to the children’s oncology unit. Upon examination, he was found to have a huge jaw mass, loose teeth and a wound in the mouth that was oozing pus. A biopsy of the jaw mass was taken and revealed that he had Burkitt lymphoma, a common childhood cancer seen in the rural regions of equatorial Africa. Chemotherapy was initiated as soon as possible. As of January 2023, he has one cycle of therapy remaining to complete. He is in remission - the swelling in his jaw has resolved and he is pain-free.
Emmanuel’s grandfather, Eliya, who has remained with him at our hospital throughout Emmanuel's treatment is extremely grateful to our staff because they facilitated Emmanuel’s diagnosis, offered free treatment, and provided other means of support such as transport, food, and accommodation. He wishes to thank the donors who donated to this project because he understands that without your support, St. Mary’s may not have been able to provide the services that they did to support both of them. Eliya has pledged to return to his village and help to educate community members about the early signs of childhood cancer. He also pledged to eliminate myths about childhood cancer since those strong beliefs about witchcraft by Emmanuel’s other family members led to cost-prohibitive and inappropriate treatment by the traditional healer. Thank you so much for supporting this project so that children with Burkitt lymphoma can have access to appropriate care and have the best chance for long-term cure.
In early January 2022, Nancy, aged 11 years, developed a toothache and a small swelling on her upper gum. Her mother initially treated her with over-the-counter medications, but when the swelling increased, she took her to one clinic after another seeking answers about what was ailing her daughter. Nancy’s condition continued to worsen, and her mother brought her to a major health center in their home district of Oyam in northern Uganda. The health center referred her to our hospital, St. Mary’s Hospital Lacor in Gulu which is not far away from Nancy’s home district. Nancy and her mother arrived at St. Mary’s at the end of January. We found her to be extremely malnourished and she had a very large jaw mass which was painful to the touch. She underwent appropriate tests, including a biopsy of the mass which confirmed that she had Burkitt lymphoma.
Nancy began treatment for Burkitt lymphoma on February 2, 2022. After the first cycle of treatment, her mother who is the bread winner for the family requested that Nancy be discharged so that she could return to work. Nancy’s father had passed away and her mother had four other children to look after. Unfortunately, Nancy did not come back to the hospital on time for her second cycle of treatment. We sent a team to her home to bring her back to us. After a rapid response to the first cycle of treatment, when we saw Nancy at home, her jaw mass had regrown. Because her mother needed to work, her aunt agreed to accompany her back to the hospital. Nancy resumed chemotherapy in late March – eight weeks after her initial cycle of treatment. Her aunt left Nancy alone in the hospital without anyone to look after her. Nancy returned home and her treatment was abandoned for the second time.
Our team visited Nancy at home at the end of July 2022. Her tumor had regrown since late March. Nancy’s living arrangements were difficult because her mother was remarried and living with her new husband and Nancy was living with her grandmother. We brought the family and community members to Nancy’s home to educate everyone about Burkitt lymphoma, its management, and the importance of adherence to planned treatment as well as the family’s important role. The community members decided to withdraw Nancy’s eldest sister (aged 17 years) from school so that she could take care of her at St. Mary’s. Nancy resumed treatment – we decided to restart all therapy from the beginning to give Nancy the best chance for cure. Her sister has remained with her at the hospital and Nancy has now completed three cycles of therapy but must continue to receive an additional three cycles of therapy. She has responded well to treatment.
Nancy’s home-life presented us with many challenges. Because her father had passed away, the only financial resources for Nancy and her siblings were derived from her mother’s income. Nancy’s living arrangements were complicated because her mother remarried and left Nancy in her grandmother’s care. Our decision to involve the community was vital in ensuring Nancy’s return to our hospital and adherence to treatment. Without the community’s support and intervention, it would not have been possible for the family to continue to bring Nancy to our hospital for her much needed treatment.
We would like to thank her community for getting involved and making the difference in Nancy’s care. Thanks to your generous donations, Nancy has received free treatment throughout this year. Thank you again for supporting children like Nancy who deserve every opportunity for a chance for long-term cure.
In late 2011, when Filbert was ten years old, he experienced abdominal pain followed by swelling. When his abdomen became distended, his father brought him to the Soroti Regional Referral Hospital that was nearby where his family lived. He was admitted and underwent abdominal surgery. A biopsy of the abdominal mass found during surgery was positive for Burkitt lymphoma. Because Soroti Hospital could not provide treatment for Filbert, he was referred to our hospital, St. Mary’s Hospital Lacor in Gulu Uganda – over 150 miles from his home. He was started on the INCTR treatment protocol for Burkitt lymphoma in January 2012 but achieved a partial response to initial therapy. He was then treated with the second-line regimen intended for patients such as Filbert who do not respond well to first-line treatment. He completed all treatment in October 2012. After his discharge, he regularly returned to St. Mary’s for follow up visits and remained in remission until he returned for an annual check up in November 2021.
At the time of his November 2021 visit, Filbert was complaining of pain in his stomach. After making appropriate investigations, we learned that he had suffered a very late relapse of Burkitt lymphoma. A relapse this many years after being in remission for nine years is extremely unusual, but not unknown to happen. Filbert was 21 years old at the time of this relapse. He was re-started on the INCTR protocol. He achieved a partial response to first-line treatment and required further treatment with the second-line therapy. At the time of his last review in January 2022, he was in complete remission.
Prior to this late relapse, he had resumed going to school and was a senior in his studies. He did say that his education had been disrupted because of the lockdowns and restrictions that were imposed in Uganda due to the Covid-19 pandemic.
Filbert wishes to express his thanks to everyone who donates to this project and to everyone in the health care profession who support children with cancer. He wants to become a medical doctor to help those in need.
Thank you to everyone who contributes to this project as your donations ensure that children, adolescents, and young adults receive the care and treatment that they need for this highly curable cancer so that they can fulfill their dreams.
In December 2020, Ukony developed a small gum sore which was initially treated with homemade remedies. There was no improvement and Ukony, then had rapidly increasing swelling in his jaw. During the third week of January 2021, he was taken to a teaching hospital in southern Sudan 60 kilometers (km) from his home. He underwent a tooth extraction, but he only became worse. He spent an additional two weeks at this hospital waiting for his family to obtain the amount of money needed to cover his travel costs to the Juba Osura Tuna Hospital, a major hospital in Sudan. He arrived at the Juba Hospital at the end of February where the doctors recommended that Ukony be transferred to our hospital, St. Mary’s Hospital Lacor in Gulu, Uganda as soon as possible because they were unable to diagnose and treat him for suspected Burkitt lymphoma (BL). Ukony spent an additional 10 days there because his family lacked funds to travel from Sudan to Uganda. Plus, he and his brother (who was accompanying him) both required negative Covid-19 tests to enter Uganda. In the end, their church provided the funds to support the costs of their 1000-km journey to Uganda.
When he arrived at our hospital on March 8, 2021, he was directly admitted to the Burkitt Lymphoma Unit. Ukony was eight years old at the time of admission. He had obvious facial asymmetry due to the large swelling of his left jaw. An oral examination showed a mass which extended from the floor of his mouth to his jaw. Several of his teeth were loose and displaced. The ultrasound examination of the mass revealed a firm intramuscular tumor infiltrating his left jaw. A biopsy was performed which confirmed the suspected diagnosis of BL. Fortunately, he had no other sites of disease.
He was started on the INCTR protocol for BL and completed initial therapy in June 2021. Because he had a partial response to first line treatment, he was treated with the protocol’s second line therapy in hope that he would go into remission. He completed second line therapy in August 2021. He remained at our hospital until November and further scans demonstrated that he was in remission. Because Ukony and his brother were so far from home for such a long period of time, we kept in constant touch with his family by sharing updates and photographs of his progress via mobile phone communications. Ukony and his brother have made the long journey home. Ukony will be followed by the Juba Hospital team in Sudan. The team will share their updates about his disease status with us.
Ukony’s story illustrates the challenges many children with BL face – delays in referrals due to lack of knowledge of local health care professionals about BL and then delays in reaching a hospital capable of treating BL when their families are very poor and unable to readily provide funds for transportation. Ukony's case was more complicated because he needed to travel to Uganda because it was not possible for him to be treated in southern Sudan. He and his brother required Covid-19 tests in order to enter Uganda which further held up his transfer to St. Mary’s. The lengthy trip from South Sudan to our hospital also delayed Ukony’s treatment. BL, although a highly curable cancer, is a rapidly growing one that if not diagnosed and treated promptly can lead to a poor outcome, including death.
Thanks to your generous donations, we were able to treat Ukony for free and to provide him with hope for cure when treatment for BL was unavailable in his home country. Thank you again for your ongoing support!
Emmanuel was brought to our hospital, St. Mary’s Hospital Lacor in Gulu, Uganda by his father on January 30th of this year. Emmanuel was five years old. He had a six-week history of jaw swelling that followed soon after he had a tooth extracted in early November 2020. Upon admission, his lower jaw was so enlarged that his tongue and teeth were no longer aligned. He had pain and difficulty chewing. Our suspected diagnosis was Burkitt lymphoma. He underwent blood tests, an ultrasound examination of his abdomen, and a chest x-ray. He was scheduled for a biopsy of his jaw mass on February 1st to confirm his diagnosis. On the day of the biopsy, we could not find Emmanuel because his father had decided to abandon his son’s medical care and they had left our hospital. His father chose to seek treatment for his son from a traditional healer.
After nearly seven weeks, on March 17th, Emmanuel’s father brought him back to St. Mary’s. His tumor had become enormous in size. It was evident that the traditional healer had cut the mass with razor blades as part of his treatment and the wound created by the cutting was deeply infected.
Emmanuel underwent a biopsy immediately and after confirmation that he had Burkitt lymphoma, he was started on chemotherapy the following day. The side effects of the drugs cause lowering of infection fighting white blood cells that made Emmanuel at high risk for developing life-threatening sepsis because of the wound. Therefore, we had to pay strict attention to wound care during treatment. We were pleased that he responded so quickly to treatment. With appropriate counselling, his father understood that we needed to administer chemotherapy treatment cycles on time and that Emmanuel’s best chance for cure would be for him to complete all planned treatment.
Emmanuel completed all six cycles of chemotherapy according to the INCTR protocol for Burkitt lymphoma and due to strict monitoring, he did not suffer from any complications during treatment. He is in complete remission and will be returning for another follow up visit soon. It is unfortunate that although Emmanuel’s mass completely resolved, he is left with the scars on his chin due to the traditional healer’s interventions.
Emmanuel’s story demonstrates the need to make the public more aware about the signs of Burkitt lymphoma and to seek care, if suspected, from qualified health care professionals capable of treating them, instead of relying on traditional healers. In our experience, traditional healers often drain the scarce financial resources that poor families like Emmanuel’s have and cause delays in children receiving potentially curable treatment, particularly when our hospital offers free treatment.
Thanks to your generous donations, children like Emmanuel can receive the treatment and support they need to have the best chance for cure. Thank you again for supporting this project!
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