Dr. Roberto Ferrara, an INCTR faculty member, recently spent three weeks on the children’s cancer ward at St. Mary’s Hospital, Lacor in Uganda to work on INCTR’s on-going project in Burkitt lymphoma. The hospital sees 80 new children with this cancer a year, but sadly many come too late with such advanced disease that they cannot be treated effectively. St. Mary’s Hospital is the only major center in Northern Uganda able to treat this type of cancer. Because their results are so promising – over 70% of children who reach the hospital in time are cured, Dr. Ferrara assisted the staff and parents of children in creating an educational film about Burkitt lymphoma. This will be widely distributed to health care personnel and the public in the region.
The film was made in the local language, Acholi. Dr. Felix Bongamyn, an intern in training in pediatrics at St Mary’s, underlined the importance of early diagnosis. As Dr. Felix stated, “without specific treatment, Burkitt lymphoma can progress very quickly and the child can die in a few weeks”. He went on to say that “even a few days can make a difference” to a child’s outcome so that it is important not to delay coming to the hospital for treatment as soon as initial signs are noticed. He emphasized that Burkitt lymphoma is not caused by an “evil spirit” – as many Africans believe, nor is it a punishment for failing to appease a tribal God. It is a cancer that can be cured, if diagnosed and treated as soon as possible.
Sister Claire, the nurse who cares for the children, spoke to parents about the need for their children to complete all planned treatment in order to have the best chance for long-term survival. Parents whose children were successfully treated recounted their personal experiences. One father told the story of how his child was paralyzed as a result of Burkitt lymphoma, but after treatment, the child could walk again.
Volunteers like Dr. Ferrara, who assist doctors, nurses and parents to “get the message out” that Burkitt lymphoma can be cured, are a valuable resource to this project. And, without the dedication of the staff at St. Mary’s Hospital and without their willingness – along with parents of children affected by this cancer - to participate in the production of the film, such a powerful and effective way of “spreading the word” to others in Northern Uganda would not have been possible. Most importantly, without your donations, the staff at St. Mary’s Hospital would not have been able to treat and cure so many children with Burkitt lymphoma. Thank you to everyone who has contributed to this project and given children with this cancer the hope for cure!
Three parents of children recently treated for Burkitt lymphoma at the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC) in Ile-Ife, Nigeria, wished to express their thanks to all of the generous donors who made treatment possible for their children.
Alimot, a 10 year old girl was ill for about four weeks before she was admitted to the OAUTHC in Ile-Ife. Her parents tried to treat her symptoms at home, but without success. Alimot’s mother stated, “I am very happy to write a letter to you because my child is doing well” since she started chemotherapy. She also sends her blessings of good will to all of the donors who contributed to this project.
Alani, another little girl of 6 years old had symptoms of Burkitt lymphoma for four weeks. But, Alani lived a great distance – some 150 kilometers away - from the Ile-Ife hospital. A hospital closer to her home could not help her and so she and her mother made the long journey to Ile-Ife, where she could get free chemotherapy, courtesy of your kind donations. Her mother wrote, “I am happy because I see the use of the drugs working like a miracle” and that “I had lost hope before”. Alani’s mother thanked everyone who has given to the project so that her child could get the help she needed.
A little boy, aged 7 years named Abdul was sick for some 6 weeks. A hospital nearby his home tried to care for him, but couldn’t provide him with the proper treatment and referred him to the OAUTHC in Ile-Ife. Abdul’s father wrote that he is “very happy that the medicines are working well” and helping his son to get better. He sent his best wishes to everyone who has given and has expressed his thanks.
Although there is national health insurance in Nigeria, sadly, it does not cover children like Alimot, Alani and Abdul who have cancer. Your donations help children to be able to receive the treatment that they need and to give them a chance to be cured. Their parents’ expressions of gratitude reflect how much your donations mean to children and their families who otherwise would not be able to afford treatment of this very curable childhood cancer called Burkitt lymphoma.
Alfa is a delightful 6 year old girl who epitomizes the stoicism and determination of many children who are patients here at St. Mary’s Hospital, Lacor - always with a smile on her face.
I met Alfa last September after she made the 164 kilometer journey with her father from her home in Nebbi to St. Mary’s Hospital, Lacor. An arduous journey at the best of times, the stakes were raised yet further by Alfa’s illness; she was weak, feverish and in pain. Over the previous 3 months, she had been experiencing worsening pain in her stomach along with swelling of her jaw. Treatment at her local hospital made no difference and she was later referred on to St. Mary’s Hospital; one of only three hospitals in the country where childhood Burkitt lymphoma can be treated.
She continued to deteriorate after she arrived at the hospital, becoming unable to stand or walk as the cancer affected the nerves in her body. She was quickly diagnosed and given life-saving chemotherapy drugs. It remained an uphill battle. But, with many hours of physiotherapy and support from both her father and the ward team, she improved dramatically. On her last day of treatment she very proudly showed off her ability to walk again as she came down the ward to greet me.
Remaining on the ward for such a long time was both costly and emotionally draining for the family. Without the funds, and associated hope that donors have so generously given, it would not have been possible to support her and her father through this. Of critical importance to Alfa was the ability for us to immediately give the expensive chemotherapy and physiotherapy; without this she would likely have remained paralyzed for life.
Alfa remains in excellent health and continues to get stronger. Due to her extreme shyness, her smile is her only outward expression of her thanks, though she did whisper to me that she is busy practicing to try and outrun her brothers once again. However, her father was very keen that we openly convey his deepest gratitude to all of the donors. He does not like to think about what would have happened without the funds that have been raised through this project and he asked us to say, “God bless you all”.
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.
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