The Burkitt lymphoma project continues with great success at St. Mary’s Hospital, Lacor in Uganda. So far, 157 children have been treated. In September of 2013, my wife, Emma and I came to St Mary’s to help with the project work. Emma, a pediatrician, is working on the ward caring for the children, while, I support the project team with data collection. One of the priorities was the long-term follow-up of children who had completed treatment to ensure that they were alive and well and identify how we could further improve upon patient follow up.
The majority of the children live in Northern Uganda where travel is a challenge - roads are not always in good condition and travel to St Mary’s can be cost-prohibitive for our families. I decided to map out the home locations of all of our patients and two facts stood out. Two thirds of our patients live over 100 kilometers from the hospital and the patient who lives the farthest away travels over 300 kilometers to reach the hospital!
After completing treatment, the children are asked to return for follow-up initially on a monthly basis and then less frequently as time passes. While some, impressively, attend as planned, many children do not return. As the parents are often poor, it made me wonder if I was a parent and cash was extremely tight, would I think that making a journey of around 150 kilometers was worth it when I knew (or thought) my child was well? With this in mind, we decided, as a project team, to actually travel to the homes to find these "lost" patients who hadn’t come back, to ensure they were doing well.
Whilst mapping the patients, we found areas with high rates of "lost-to-follow-up" and identified 25 children that we thought we could reach out to. As a result of the local communities’ hospitality and willingness to help, we were able to successfully trace 15 patients to their home villages and meet with them and provide a “check-up”. Sadly, two children had died and one had recently become unwell. Having discovered this child, we were able to arrange for him to return rapidly to St Mary’s Hospital where he is, again, receiving treatment and improving. Twelve other children were found to be alive and doing very well. It was brilliant watching the children run around and play with their siblings and they were so proud to tell us they were attending school again!
Amongst the patients we found was the first patient treated with this therapy at St Mary's in 2010. Akello successfully completed treatment for her Burkitt lymphoma and is now a teenager, attending school and doing very well with no lasting signs of illness. She posed for a picture with her family who were delighted to see us and incredibly appreciative that the hospital team had come to their home to see her. We were welcomed like this wherever we visited, offered Ugandan hospitality - including a live chicken to take away when we did not have time to sit and eat with a family, and were able to see some of the beautiful countryside as we travelled.
Clearly, there is a significant cost involved in this venture given the distances covered by car, but it is vital when all other means of contact have failed. Checking on progress is integral to the success of the project and the development of new treatment plans; it gives clear information about progress, allows problems to be identified, builds rapport with the community and brings joy to the families, reminding them that they are remembered and care always continues – even after treatment. Without funds, it would not be possible to provide this support.
We hugely appreciate all your donations so thank you, or as the children here say, Apwoyo!
Arim is a boy who lives in a village called Omara in the Lira District in northern Uganda. He was originally diagnosed with Burkitt lymphoma in 2009 when he was 6 years old. He was treated with 6 cycles of chemotherapy at our hospital and he greatly improved. After the end of treatment, he had no evidence of disease and was then able to resume the life of normal 6 year old boy. He completed his 4th year of primary school. Before Arim became sick, he lost two siblings shortly after they were born, due to infections and his father died several years ago, leaving his mother alone to care for him. Because Arim’s mother has only limited education, she is only able to support Arim and herself through manual labor.
Although Arim did well, in June 2013, he unfortunately started to complain of abdominal pain. Very soon, his abdomen became grossly swollen and he had severe difficulty in breathing. He had little energy and felt very weak and eventually became unable to walk and could barely move due to his shortness of breath. Tests were done and confirmed that his Burkitt lymphoma had come back.
Arim started therapy again and his mother was so pleased that he had greatly improved after one cycle of treatment. Although he is still on treatment, he is doing so well that he has managed to spend a few days at home with his friends and relatives between cycles of therapy. He is greatly looking forward to the time when he can return to school.
Our staff at St Mary’s Hospital Lacor is grateful to the many donors who have contributed to the INCTR project – making treatment possible for a child like Arim and giving him the chance to live the life of a normal boy.
Although Nigeria has recently introduced national health insurance, it unfortunately has not had a positive impact on the plight of children and their parents with Burkitt lymphoma because it does not cover cancer treatment. In the past year, at the Obafemi Awolowo University Teaching Hospitals Complex in Ile-Ife, we have treated many patients with Burkitt lymphoma thanks to the generous donations made to Global Giving for the INCTR project for the treatment of this cancer. The parents and children deeply appreciate the kindness and generosity of the donors because without this support, the majority of the families could not have afforded the costs of the treatment for this highly curable cancer.
The donations have had other positive impacts on the overall care of the children. An example is that we have been very successful in being able to monitor children after they have been discharged from the hospital so that we have excellent follow up on our patients. At times, parents, due to pressures to care for other children at home and to work to support their families, sometimes cannot ensure that their child can complete planned treatment. But, with funding, we are able to make home visits and verify that these children are indeed well. A good example of how we have been able to follow such children is the case of young OW, a 4 year old boy who came to us in April this year. He had bilateral jaw masses and his disease went away. After completing three cycles of treatment, his parents could not bring him back to the hospital for treatment. But, he is doing very well and is constantly monitored to ensure that his health remains good and that he shows no signs of return of his disease.
The collaboration in the treatment of Burkitt lymphoma between INCTR and Bugando Hospital in Northern Tanzania was initiated approximately 2 years ago, but already much has been achieved and the Hospitals Oncology Department in particular is grateful to INCTR for its assistance in the diagnosis and treatment of patients with Burkitt lymphoma (BL). Although BL does not, of course, account for all the oncology patients, the project has had a broad impact on many aspects of oncology in the hospital, since the basic principles of care can be applied to other cancers, and in the context of diagnosis, significant improvements have been made which, of course, mean that patients receive the most appropriate therapy for their disease. Also very important is the detection of cases and improving access to care. In this regard, we believe we detect all cases in the region, but we hope to undertake a more detailed examination of the fraction of all cases in the region that reach Bugando Hospital.
With respect to diagnosis, we feel that we are now able to diagnose accurately BL,DLCL,HD and other childhood cancers such as Wilms’ tumour, retinoblastoma and hepatoblastoma which can resemble BL clinically. We stage patients according to the size of the tumor and involved sites, based on clinical examination and ultrasound alone, since we do not have access to expensive CT and MRI scans. The INCTR treatment protocol for BL, which contains a considerable amount of information about toxicity and what needs to be done if there is a high degree of toxicity. This has greatly increased the discipline with which treatment is given, and the need to record response and toxicity has been invaluable in teaching the nurses and residents in both pediatric and adult oncology branches to adhere closely to the protocol treatment and to ensure that patients suffering toxic side effects are promptly treated. Wehave also learned the importance of communicating effectively with other departments and following up patients who have completed their treatment, either by mobile telephone or actual visits. Thus, our record keeping is nowmuch more accurate.
Because this collaboration has ensured a regular supply of chemotherapy drugs required to treat patients according to the protocol, we have been able to increase the number of patients treated, and even been able to treat other patients with the excess of drugs provided by INCTR. In all, a total 56 cases have been enrolled into the INCTR protocol. Five were not eligible only 3 deaths have been seen so far among these 56 patients. Two of these were due progressive tumor growth – i.e., patients had resistant disease.
Lastly, but most importantly, INCTR has taught staff to understand research methods, including the collection andstorage of data, quality assurance and overall project management.
We are planning to extend the knowledge gained from the conduct of the INCTR Project to the entire oncology department, and to ensure that the principles of care learned from its use are applied on a daily basis to oncologypatients. We also plan to continue to collaborate with INCTR and hopefully add other components such as public education and education of primary care physicians to ensure that patients are diagnosed as early as possible. This, as is the case with many other aspects of the INCTR protocol can be applied to all cancers, not just Burkitt lymphoma.
(Based on an interview with Ilong Gleasong, Oma’s father, by our Nurse in charge of the oncology and palliative care units, Claire Lalam. (these are not the true names of the patient and father)
Oma was a healthy boy aged 14 years, who attended school regularly. He was in primary 6 in December 2012 and appeared well and energetic at the beginning of the month. On the 15th of December, however, he developed fever, headache and intermittent abdominal pain which rapidly worsened as his abdomen became swollen and he became progressively weaker. Soon, he could not walk and was unable to eat. During this time he was taken to various health facilities where he was given repeated treatments for malaria and other common infections – such “empirical” treatment (treatment without a diagnosis) usually helps children with fevers, which are most often caused by malaria or another infection. However, Oma did not improve. In fact he continued to deteriorate. Eventually he went to APAC Hospital, where an ultrasound examination of the abdominal was performed. This identified a large mass (lump) in the abdomen, the most likely cause of which was felt to be cancer. Oma was therefore referred to Lacor hospital for further tests and potentially, treatment.
“When we arrived at Lacor hospital,” said Ilong, “Oma was very weak, malnourished and not even able to sit up.” He was also in a great deal of pain that was only partly controlled by morphine given every 4 hours. A biopsy (tissue sample) of the abdominal mass was performed, which the pathologist reviewed and diagnosed as Burkitt lymphoma.
Treatment was started promptly and Oma has already completed the 4th cycle of chemotherapy. “He has some vomiting on the day after the treatment,” says Ilong, but he improved very quickly once treatment was started. His abdominal swelling had disappeared just 1 week after the 1st dose of chemotherapy.”
Oma is already playing with other boys and girls. He is happy and seems very healthy again. He often thinks about going back to school, and sometimes misses his siblings at home, whom he has not seen since he came to Lacor. His home is far away and the family cannot afford to go home and come back for treatment every 2 weeks. The father is worried about financial issues since he lives by farming a small plot of land and has a young family of 6 children to feed, the eldest being Oma and the youngest just 2 years old. Ilong is, therefore, very grateful that he will not have to pay for the treatment.
Ilong and Oma have a general understanding of the illness and are both very pleased that he has done so well. They have expressed their gratitude to the hospital for saving his life. In turn, the hospital is grateful to all the people who have donated generously to GlobalGiving, without whose help they could not achieve this seemingly miraculous result.
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