Aug 6, 2018

A Young Boy with Burkitt Lymphoma in Rural Uganda

Jonathan and his Mother
Jonathan and his Mother

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.

 

May 8, 2018

A Tribute to Jane

Jane (July 2017)
Jane (July 2017)

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.    

Feb 13, 2018

Bisma Survives a Late Relapse of Burkitt Lymphoma

Bisma Gives a Thumbs Up
Bisma Gives a Thumbs Up

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!

 
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