Robinah was 11 years old when she came to St Mary’s Hospital Lacor in Gulu, Uganda. She came to the hospital in April of 2019 and was accompanied by her 16 year old brother. They had lost both of their parents. Their uncle, who provides for them, is a subsistence farmer and could not take the time away from work to bring her to the hospital. Therefore, Robinah and her brother had to make the hazardous journey from their village to St Mary’s alone. Their journey took a very long time because good roads were not easily accessible and transportation services were unreliable.
Robinah had an approximately one-year history of jaw swelling. Because it was painless, the family did not seek health care. About four months prior to admission, she developed abdominal swelling which progressively worsened. Not long after her abdomen swelled, she developed swelling of her lower limbs and started to have difficulty in breathing. It was then that the family began to mobilize the funds necessary to pay for her transportation to St Mary’s.
Upon admission to the hospital, she had very advanced disease. Not only did she have facial swelling, but she also had wide-spread disease throughout her abdomen. Fluid surrounded both her heart and lungs. A biopsy was performed that confirmed the suspected diagnosis of Burkitt lymphoma. She was promptly started on treatment and rapidly improved. She was able to breathe more easily and her facial swelling became smaller. The staff could see how happy she was. Her brother, who never left her side, was visibly relieved.
After the second cycle of therapy, Robinah was doing so well that she asked if she could go back home so that her brother could continue school. Because the team at St Mary’s was unsure that she would be able to return to complete all six cycles of planned chemotherapy, they called her uncle to obtain his permission to let Robinah stay at the hospital’s family home and informed him that her best chance for a long-term cure was to complete all planned treatment without unnecessary interruptions related to long-distance travel. Her uncle was assured that she would be well taken care of and he agreed to let her stay at the family home during the remainder of her therapy. Her brother then returned home to go back to school.
The family home was vital to Robinah’s successful outcome. While staying there, she found a second family that supported her. She was excited to have the opportunity to continue with her own education through the school based at the family home. This was important to her because she had missed school for nearly a year prior to her admission to the hospital. She completed all treatment and presently has no evidence of Burkitt lymphoma.
With your generous contributions to this project, children who are very poor and need support to cover the costs of treatment, including food and accommodation, can be helped. Your donations ensure that a young child with Burkitt lymphoma has the best chance for cure. Thank you again for your support!
After experiencing a week-long history of a rapidly growing mass in the right side of his face, Guido’s parents brought their five-year old son to St Mary’s Hospital Lacor in Gulu, Uganda.
Upon admission to St Mary’s, Guido’s face appeared deformed due to a very large mass on the right side of his face that extended from his upper to lower jaw. He was in pain and had great difficulty in swallowing such that he could barely drink, let alone eat. Inside of his mouth, his teeth were loose and displaced. Given the classical features of the mass and its very rapid growth, the doctors suspected that he had Burkitt lymphoma. Guido underwent a biopsy of the mass and had other tests performed. The biopsy confirmed that he had Burkitt lymphoma. Fortunately, the tumor had not spread to other parts of his body.
Guido was started on chemotherapy as soon as possible and after two cycles of therapy, he no longer had any visible signs of his jaw mass and his face was normal in appearance. He has continued with therapy. This has been a challenge for his parents. They are subsistence farmers and have seven other children to care for at home which is a very long distance from St Mary’s. His mother has remained with Guido throughout treatment, including the times when he is in-between treatment cycles. Although, Guido’s tumor visibly disappeared very rapidly, his parents understood that their son must complete all planned treatment (a total of six cycles of chemotherapy) to ensure that he has the best possible chance of achieving a long-term cure.
Guido and his mother were able to stay at the hospital’s Rainbow Family Home. At the home, he has been helped to overcome his initial sadness and shyness which were largely due to the disfigurement of his face caused by the tumor. Now, that his mass is gone, he is a much happier little boy. He participates in social activities with other children and enjoys attending the Rainbow Family Home School.
A rapidly growing jaw mass in a five-year old who lives in equatorial Africa is a very classical presentation of Burkitt lymphoma. A major factor in whether or not a child survives this highly curable cancer is access to a hospital capable of diagnosing and treating them. Parents dependent upon seasonal farming work and with other children to care for at home find it financially very difficult to pay for treatment and for other expenses associated with being away from home for prolonged periods of time.
Your generous donations to this project help us to provide not only the necessary treatment, but also other types of support that children with Burkitt lymphoma and their families need. Thank you!
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 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!
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