Cure 250 Children with Burkitt Lymphoma in Africa

by The International Network for Cancer Treatment and Research (INCTR) Vetted since 2011 Site Visit Verified
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
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!    

Emmanuel with Ronald, an INCTR Volunteer
Emmanuel with Ronald, an INCTR Volunteer

Emmanuel is a 12 year old boy whose parents are subsistence farmers. His family, including his five siblings, live in the Palwo Parish in the Bobi sub-county in the Omoro District in northern Uganda.

He became unwell in 2018 and his parents sought treatment from health facilities nearby his home. Because his condition did not improve, his parents brought him to St Mary’s Hospital Lacor in Gulu where he could undergo medical investigations that were not available in his community health centers. Following these tests at St Mary's that included a biopsy, it was determined that he had Burkitt lymphoma. A total of six cycles of chemotherapy were planned in order to give him the best chance of remission and long-term cure.  

Because he was very ill when he came to St Mary’s Hospital and remained ill after treatment was started, it would have been difficult for him to return home in-between treatment cycles.  Therefore, the team responsible for caring for him made the decision that he and his mother should stay at the hospital’s Family Home.  The Family Home offers many services and one of the services included the ability to attend the Rainbow Family Home School on days when he was feeling well and not having chemotherapy. Initially, Emmanuel was painfully shy at the school so it was not easy for him to answer questions asked of him and or to ask questions if he did not understand something being discussed in class.  He was also aware that he was very behind other children in terms of the basics – reading, writing and arithmetic. But, Emmanuel was very determined to improve and he attended school daily.  He grew more and more self-confident  such that he progressed in his studies and was able to really enjoy participating in both school and non-school related activities with the other children.

Emmanuel completed treatment shortly before Christmas. Although he was discharged from the hospital early in the New Year, his mother says that the family will bring him back for monthly follow up visits to ensure that he remains free of Burkitt lymphoma.

His mother expressed her thanks to everyone who supports this project.  Without your donations, Emmanuel would not have been able to receive free treatment and to stay at the Family Home.  She wants you to know how important the school was in improving not only his academic skills, but his social skills, too.  She stated that he is always willing to help the younger kids being treated with cancer by offering whatever support he can.  And, Emmanuel would like you to know that he wants to become a medical worker when he gets older so that he can help children with cancer.  Thanks again for all of your donations that helped this young boy to overcome his Burkitt lymphoma so that he can fulfill his dreams for the future!!!   

David was 10 years old when he was first admitted to St Mary’s Hospital Lacor in Gulu, Uganda in March, 2013. He came from a rural village in the Kole District which is about two and half hours away from the hospital – depending upon the access to good roads and the availability of transportation services. Both of his parents were peasant farmers and they had five other children to care for.

Upon admission, David and his parents reported that he had a five-month history of abdominal pain and swelling that was accompanied by fatigue. An abdominal ultrasound examination was performed which showed diffuse intra-abdominal involvement. He, then, underwent a biopsy of his abdominal mass that confirmed the suspected diagnosis of Burkitt lymphoma.

He was started on the first-line treatment protocol for Burkitt lymphoma. A total of six cycles of chemotherapy was planned. David tolerated therapy well, but he experienced delays of more than one week due to low numbers of infection fighting white blood cells. His parents requested a temporary discharge from the hospital after the 4th cycle which resulted in an even longer delay in starting the 5th cycle. He stayed at the hospital to ensure that he received his 6th and last cycle of therapy on time.   He achieved a complete response to therapy with no evidence of abdominal disease after the 3rd cycle of treatment and again, at the end of treatment. He was then discharged home. This was in July of 2013.

He wasn’t seen at the hospital following his treatment. We know that relapse after treatment is rare in children with Burkitt lymphoma after one year has passed. But, David was not been seen during this critical first year. Therefore, it was unknown what had happened to David. We could only speculate.   Sometimes, when a child does not return, it is because their cancer has come back and the family choose not to pursue further treatment. Sometimes, families move to other villages without giving forwarding information to the hospital or their neighbors. As time goes by, it becomes more difficult to trace a child like David. But, his parents were contacted recently.  It was a pleasant surprise to learn that David, who is now 15 years old, was very healthy and attending school. When asked why they had not returned to the hospital, they said that because David was so well that they did not think it was necessary to make the journey to the hospital and they did not want to bother the staff because they were so busy with sick children. While David’s story had a happy outcome, it is important that parents are educated about the need for their children to be followed up for tumor recurrence, particularly in the first year after treatment since this is the highest risk period for relapse.  

Through your generous donations, David had access to free treatment.  Because of the generosity of the many donors who have supported this project, we felt obliged to find out what had happened to David and to other children like him who seem lost, but can be found. This is also necessary so that we can report the results of this project with certainty. Thank you again for your continued support!    

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.

 

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.    

 

About Project Reports

Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

Project Leader:
Melissa Adde
Brussels, Brussels Belgium
$89,871 raised of $95,000 goal
 
642 donations
$5,129 to go
Donate Now Add Project to Favorites

Help raise money!

Support this important cause by creating a personalized fundraising page.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.