Cure 250 Children with Burkitt Lymphoma in Africa

Jonathan was 7 years old when he was first admitted to St Mary’s Hospital Lacor in Gulu, Uganda in March 2018. He had a two-week history of progressive abdominal pain and swelling. His parents took him to a doctor who referred him to our hospital. The journey to our hospital was difficult due to poor access to roads and transportation.  Jonathan and his parents had to travel via motorcycle for two hours and then another two hours by bus in order to reach us.  

Jonathan is one of three surviving children in his family.  Four other siblings died and his mother found it too painful to talk about their deaths. He lives with his parents and two siblings, aged 15 and 13 years old. They live in a grass-thatched house in a village in the Apac District which is a predominantly agricultural region in northern Uganda. His parents are subsistence farmers and are dependent upon the help of their children to pick crops during the harvest season.

Upon admission, Jonathan was found to have wide spread disease throughout his abdominal cavity and fluid surrounding his heart. He also had facial swelling. A biopsy was performed which confirmed the suspected diagnosis of Burkitt lymphoma. He was promptly started on chemotherapy and had marked improvement within a few days.  His mother was very happy because he looked so well. He received his second cycle of chemotherapy. After this cycle was completed, his parents asked for a temporary discharge in order to return home.   

Once at home, Jonathan was happy to see his siblings and friends in his village.  Then, harvest time began and everyone in the village, including Jonathan and his family, were busy with harvesting corn and soya as well as stocking up on seeds and other foods. Harvest time is a joyful time because the entire community comes together to do the jobs that are necessary to prepare for the future when food and work may become scarce. During this time, Jonathan’s father became ill and his mother had to care for him until he recovered. Meanwhile, Jonathan continued to play and help out in the fields by fetching water until one day he could no longer open his one eye.  His eye began to bulge and then, he could no longer see out of this eye. His parents thought that an evil spell had been cast over their family. By this time, Jonathan was a month overdue for his treatment. His parents brought him back to Lacor Hospital as soon as they could.

His parents had a hard time accepting that Jonathan’s new symptoms were consistent with his original diagnosis. They did not understand that Burkitt lymphoma requires on-time treatments until all planned therapy has been completed in order for their child to have the best chance for cure. After many discussions with the parents, it was agreed that Jonathan and his mother would remain in the hospital’s local accommodation so that Jonathan could complete all treatment without delays.  Chemotherapy was re-started. Jonathan’s facial swelling decreased and he can now see. Although Jonathan’s mother misses her other children and husband, she wants to do whatever she can for her youngest child and prays that he will live and be cured.

Jonathan’s story shows how difficult it is to access cancer care in northern Uganda. Furthermore, it illustrates how difficult it can be for parents to support their family including a child with cancer at the same time. Many parents think that once their child feels and looks better that their child is cured. Therefore, they have minimal understanding of the need for their child to complete all planned treatment (and on time) and to bring their child for follow up visits after treatment is completed to ensure that should problems arise, these can be dealt with immediately.

Your generous donations have made it possible for us to provide treatment to children from families who are very poor - such as Jonathan's.  We thank you for your support.

Jane was 9 years old when she first came to St Mary’s Hospital Lacor in March of 2015. When she initially arrived at the hospital, she presented with kidney and ovarian involvement.  A biopsy was performed and it confirmed that she had Burkitt lymphoma.  Ovarian disease in young girls such as Jane is not uncommon. 

She was started on first line therapy and completed this by the end of June of 2015.  Jane achieved a complete response. Unfortunately, when she came for her first follow up visit, she was found to have recurrent disease.  Because of this early relapse, she was started on the second line treatment that includes different drugs from the first line therapy.  She completed four cycles of second line therapy by the end of 2015 and again had a complete response.  But again, Jane suffered a relapse and was treated with additional cycles of chemotherapy. She was well for a period of 5 months until November 2016 when she returned to Lacor Hospital with an orbital mass and multiple abdominal masses.  She was again re-treated, but the response to treatment was only transient.  Thereafter, this became a pattern for Jane – complete responses followed by nearly immediate recurrences - her last being in June 2017.  She was re-treated then, but it was clear that the continual cycles of chemotherapy were taking their toll.   Jane would say that she was “tired of being pricked” by needles.  She said that some procedures were too painful and expressed, “I wish I could rest from all of these pains”.  To be sure that Jane’s original diagnosis was correct and that the treatment approaches were appropriate, she underwent a biopsy that verified her initial diagnosis.  She was observed frequently and allowed to return home briefly. The last time she returned to the hospital, she was gravely ill.  Jane and her parents wanted to try more treatment.   Sadly, Jane died before additional treatment could be started.  She had just turned 12 years old shortly before her death, having spent a significant part of the last three years of her life at Lacor Hospital.  The pattern of Jane’s rapid response to therapy followed by recurrent disease was difficult for the staff to understand and manage.  But, it is not unknown that a child with African Burkitt lymphoma can survive – even after multiple relapses.  Unfortunately, Jane could not be one of these children. 

Jane should be remembered for what she gave to others at the hospital. She endeared herself to so many people-  other children with cancer, their families and the staff. She taught the alphabet to very young children at the hospital.  She knew English sufficiently well so that she could serve as a translator for parents and children. She loved all activities – singing, dancing and drawing.  Her death had a profound effect on not only her family, but other parents, older children and the staff as well.  Following her death, all of the parents accompanied her body to the hospital mortuary in tribute to her.  Jane left a very great hole in so many hearts and she will not be forgotten. 

While Jane’s story is very sad, Jane and her family always maintained their hopes for Jane to eventually be cured.  This is thanks to your generous donations.   Children with  Burkitt lymphoma, particularly, in sub-Saharan Africa may not always have a happy ending.  At this time, we do not know the actual number of children with Burkitt lymphoma in Uganda since many children with this cancer, which grows so rapidly, may die before they ever reach a hospital capable of treating them.  We must also take into consideration the feelings of parents who do not wish to lose a child and of the child who does not want to die.  We thank all of you who have donated to this project because your generosity has given the support and hope that the children with Burkitt lymphoma and their parents so desperately need.    

Bisma is a 10 year old boy who is one of 9 children in his family. His father is a builder and his mother, a peasant farmer. The main source of family income comes from the sale of crops that they grow. But, this income is only enough to provide for the family’s essential needs like food and clothing. The family is unable to pay for health care.

In 2014, when Bisma was 7 years old, he experienced pain and swelling in his jaw. His mother took him to a dentist who extracted a tooth. Unfortunately, things got worse following the extraction – meaning that the jaw swelling and pain returned. His mother then brought him to our hospital, St. Mary’s Hospital Lacor where he was diagnosed with Burkitt lymphoma. When his mother learned that he had cancer, she believed that he would die because those are the beliefs about cancer in the village where they live. She was reassured by the doctors at our hospital that the cancer was treatable and that the chemotherapy Bisma needed was available free of charge. She was encouraged by seeing other mothers with their children on the ward and agreed to stay for the duration of treatment. After the chemotherapy was started, his mother said that the pain Bisma had been experiencing was soon forgotten because he improved so quickly. He went into remission and stayed free of Burkitt lymphoma for 3 years.

During a follow up visit in 2017, Bisma presented with abdominal pain and distension. His tumor was growing so fast that by the time his biopsy results came back, he was bed ridden. He had several masses in his liver, spleen and both kidneys. Due to the extent of his disease, he had impaired kidney function before we were able to start treatment. We knew that he would be at high risk for complications related to not only his lymphoma, but also related to the treatment itself due to his poor kidney function. But, our only hope for curing Bisma was to start chemotherapy.  

He was given the first cycle of chemotherapy under close observation and monitoring for tumor lysis syndrome which is more likely to occur with very extensive disease. He did develop this syndrome, but we managed to get him through the initial days of therapy. As we anticipated, he developed complications related to treatment. He suffered from extensive irritation and erosion of the lining of his mouth and esophagus such that he could not even swallow his saliva. He became very anemic and experienced bleeding. His infection-fighting white blood cells were so low that he developed infections which were life-threatening. Our medical team found his care challenging because he had more extreme side-effects than we had seen before. Every morning, we would first glance at his bed and whenever we found it empty, we thought he had died. We were not alone with our fears. His mother informed us that Bisma said to her, “Mummy, if I survive today, praise God. But if die, then that is it”.

But, Bisma was strong. He fought for his life, day by day. By the end of the first 4 weeks, he had completely recovered. He finished the rest of his treatment with minimal side effects and is now cancer free. He is active and likes music and dancing. He wants to become a policeman when he grows up, but sometimes, he is scared that his cancer will return.

His mother is so grateful that her child was able to receive treatment for free. Because the family could not afford the costs of treatment, she said that her son would be dead by now without donations made to this project. She said, “Right now, I don’t have anything to give you to show how much I appreciate everything, but I want to say thank you so much and may God bless you all”.

From the perspective of being the Lead Pediatrician responsible for his care, late relapse, such as what occurred with Bisma, is seen in only a few percent of patients. But, more importantly, I learned that it is never too late to treat Burkitt lymphoma no matter how extensive it may be because every child has a chance to live. Let us always give them that chance. Thank you to everyone who donates to this project which makes it possible for us to treat these children!

In December of 2016, Anthony came to our hospital, St Mary’s Hospital Lacor in Gulu, Uganda. He was 11 years old.  Anthony is from the Moyo District in the north eastern part of the country and he lives over 100 kilometers from Gulu.  His father is raising Anthony and his two brothers – one brother is Anthony’s twin – as a single parent.  When Anthony arrived on our Burkitt’s ward, he presented with swelling of his abdomen which had been rapidly progressing for one month.  His abdominal swelling was associated with pain and he also had fevers during the night that were followed by sweating.  When we examined him, he had a distended abdomen and we could easily palpate or feel masses within his abdomen.  He also had involvement of his spleen.  But, he was able to walk in spite of his painful and distended abdomen.  And, Anthony was actually able to give us most of the history of his illness.  He underwent a biopsy in order to diagnose what we suspected was Burkitt lymphoma (BL).

Once we received confirmation of Anthony’s diagnosis as being BL, he was started on treatment right away. He developed a common side effect of chemotherapy called neutropenia which means that his infection fighting white blood cells in his body were too low. Therefore, he was at risk of acquiring a serious infection that might potentially result in the loss of his life.  His next cycle of chemotherapy had to be delayed in order to allow his bone marrow which makes these important blood cells to recover.  But, Anthony was strong and he managed to get through this period of neutropenia despite our own limited resources to protect him against life-threatening infections.  Although he received a second cycle of our first line therapy without any side effects, an evaluation of his disease status showed that he was not responding to treatment as we had hoped. 

Therefore, we made the decision to change him to the second line therapy that consists of drugs that are considered to be non-cross resistant (and different) to those chemotherapy drugs he had received during his first two cycles. The drugs used in the second line therapy are also highly effective against BL when our first line therapy does not work as well as we expect it to.  With the ability to provide the second line therapy, we were able to offer Anthony and his family hope.  The second line therapy has more drugs with the potential to cause more harmful side effects.  To our joy, Anthony completed all of the four planned second line treatment cycles without major side effects.  But, most importantly, he had a complete resolution of his BL. 

Anthony comes for regular follow up visits. I saw him recently and he was very happy and healthy.  His life is normal again, he is with his family and he cannot wait to go back to school as soon as the new term begins.  His smile said it all – “thank you, thank everyone and every kind heart that gives to save lives like mine and many of the children with Burkitt Lymphoma”.

During my recent visit to St. Mary’s Hospital Lacor in Gulu, Uganda, I had the opportunity to meet many of the children and adolescents on what is called the “Burkitt’s Ward”.  One of the adolescents who I met was a 17 year old girl named Emily.  Unlike many of the other patients and parents on the ward, Emily and her father were able to speak English.  They both talked to me about Emily’s history and treatment for Burkitt lymphoma (BL). 

In the late spring of 2016, Emily developed abdominal pain and swelling. Her parents, both teachers, took her to the local hospital nearby her home in the Arua District of Northern Uganda.  She was thought to have had an ovarian cyst which was excised in July of 2016.  Upon further examination of the cyst by pathologists, it was determined that she had BL.  Ovarian tumors are common presentation features of BL in girls – Emily was 16 years old at the time of her initial diagnosis.  The doctors at the local hospital referred her to Kuluva Hospital which is located in a suburb of Arua. The doctors at Kuluva Hospital are familiar with the treatment of BL and after further tests were performed, she began treatment according to a regimen similar to what is used at St. Mary’s Hospital Lacor for newly diagnosed patients with BL.  She completed six cycles of therapy in November of 2016 and was then discharged home.  She was able to return to school, but soon afterwards developed abdominal pain and swelling.  The doctors at Kuluva Hospital referred Emily to St. Mary’s Hospital for treatment of suspected recurrent BL.  

Once Emily arrived at Lacor Hospital, she underwent more tests, including a biopsy of one of the abdominal masses detected by scans. The diagnosis was again BL.  Because she recurred so early after the completion of initial treatment, the decision was made to give her what is called Second Line therapy.  Second Line therapy consists of different drugs that are considered effective against BL, but it is a more intensive treatment regimen that requires more complex care than what could be provided at Kuluva Hospital.  As there has been success with Second Line therapy in many patients who have had resistant disease, this was considered the best treatment option for Emily. 

Coming to Lacor Hospital has been difficult for Emily because it is over 250 kilometers away from her home. It takes nearly 6 hours by bus to come to Lacor.  Her father reports that the costs of travel are becoming difficult for her family to afford because it costs approximately $20 for a round trip bus ticket for both Emily and her father.  While this cost might not seem so high to donors to this project, travel costs such as these impose a substantial financial burden on poor families in Uganda who live on less than 2 dollars a day.  When families such as Emily’s have more than one child, it can be extremely difficult to ensure that the other children are provided for when the one child with cancer is away from home.  

Emily has nearly completed treatment and signs are optimistic that her BL has responded well to the new treatment. She and her father understand that it is important for her to complete all four cycles of treatment in order for her to have the best chance of a long-lasting cure.  She loves school and misses going to classes and her friends, too.  When I asked her what she wanted to do when she finished school, she said that she wanted to become a nurse.  This is because of the example that has been set by the many nurses who have cared for her throughout this difficult time in her life.  She just wants to be able to help sick children like the many she befriends on the ward. 

Without your donations, St Mary’s Hospital Lacor would not have been able to offer Emily treatment for her relapse. And, thanks to your donations, Emily has a chance to fulfill her dream of becoming a nurse.