Cure 250 Children with Burkitt Lymphoma in Africa

by The International Network for Cancer Treatment and Research (INCTR)
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Filbert After Treatment for His Late Relapse
Filbert After Treatment for His Late Relapse

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.

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Ukony After Treatment with his Brother
Ukony After Treatment with his Brother

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!    

 

 

 

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Emmanuel After Treatment
Emmanuel After Treatment

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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Raphael After Initial Chemotherapy
Raphael After Initial Chemotherapy

Raphael and his family come from a village in the district of Kole in northern Uganda – a journey with accessible roads and available transportation - that can take up to two and a half hours or more to reach our hospital, St. Mary’s Hospital Lacor in Gulu, Uganda.

Rapahel was referred to us by a health center nearby his home. His father accompanied him to our hospital. He provided us with Raphael’s social and recent medical history as the health center did not provide a referral letter. His father stated that he left six other children and his wife at home in order to bring 11 year old Raphael to St. Mary's. Both parents work as subsistence farmers – meaning that the family has very few financial resources. He informed us that Raphael had suffered with progressive swelling in the right jaw for three months. The swelling was initially thought to be due to an infected tooth. Raphael was otherwise well and had no other symptoms except for mild pain when we examined his very enlarged right jaw.

Based upon our findings at the time of his admission, we suspected that Raphael had Burkitt lymphoma. We did a full work-up that included blood tests, an ultrasound of his abdomen, and a biopsy of his jaw mass. The biopsy findings confirmed that he had Burkitt lymphoma. He had no other evidence of disease. We started him on the INCTR protocol for this cancer. He responded well to initial chemotherapy and his face is no longer disfigured by the jaw mass.   

Due to the costs of transportation, which have substantially increased during the global pandemic, it was considered best for Raphael and his father to remain at the hospital’s family home during treatment. So far, Raphael has completed five of six planned cycles of chemotherapy. While with us, he continues with his primary school studies at the Rainbow Family Home School. His only major complaint has been about the food – evidently, he prefers home-style cooking!

We thank everyone who supports this project so that poor children who live in rural areas like Raphael can receive free treatment, have a chance for cure, and receive the social support that they need, including the opportunity to continue their education at the Rainbow Family Home School especially during prolonged stays away from home. Thank you again for your generous donations! 

 

 

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Kalum's Excited and Ready to Go Home!
Kalum's Excited and Ready to Go Home!

Kalum, aged ten, was brought to St. Mary’s Hospital Lacor in Gulu, Uganda by her father in late September of 2020. They travelled 200 kilometers from their village in the Moyo District to come to our hospital. Her mother remained at home to continue her work as a peasant farmer and to care for Kalum’s seven siblings.

Approximately six weeks prior to admission, Kalum’s father reported that she had a tooth extraction and soon afterwards developed rapidly progressive and painful swelling of her left jaw. Upon examination, we noted that the left side of her face was grossly deformed and that she had a mass protruding from the inside of her mouth. Her abdomen was mildly distended and a mass in the right upper abdominal quadrant was palpable and very tender. She had no other clinical signs of disease.

We performed routine laboratory work as well as other diagnostic tests, including an abdominal ultrasound. The ultrasound showed that she had multiple solid masses in her liver as well as a mass in her right kidney. Her other tests were negative. A biopsy of her jaw mass was taken. The results of the biopsy confirmed that she had Burkitt lymphoma.

Based upon the results of the investigations, it was decided to treat Kalum according to the high-risk arm of the INCTR treatment protocol for Burkitt lymphoma – meaning that she would receive a total of six cycles of chemotherapy with intrathecal therapy to prevent spread of disease to her central nervous system. She was started on treatment as soon as possible.  

After two cycles of chemotherapy, she had an excellent response. There was complete resolution of all masses in her abdomen as well as her jaw mass. She recently finished her sixth and last cycle of treatment and tests performed at this time showed that she was in complete remission.

Because treatment cycles for Burkitt lymphoma are given every two weeks and any unnecessary delays in treatment for this particularly aggressive cancer – such a discharge to a home far away from the hospital - can have negative consequences, it was decided that Kalum needed to remain with us for the duration of her treatment. Once she finished all planned therapy, she was very excited to go back home to see her siblings after her long hospital stay!  

Your donations to this project support the costs of treatment and gives children with Burkitt lymphoma the opportunity and hope for long-term cure. Your donations also help to support the costs of transportation so that children and their parents can reach a hospital capable of treating this very curable cancer. Transportation costs are all too often unaffordable for families like Kalum’s. Thank you again for generosity!

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Project Leader:
Melissa Adde
Brussels, Brussels Belgium
$117,401 raised of $125,000 goal
 
913 donations
$7,599 to go
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