At the age of only 17 years old, Safina developed swelling in both of her breasts. In July of 2012, she sought help at a regional hospital. The doctors suspected that she had advanced breast cancer. They performed a bilateral matectomy and she was discharged home, but without a histological diagnosis. Several weeks later, Safina developed masses in her surgical scars. In October of 2012, she was referred to our hospital- St. Mary’s Hospital Lacor- for a biopsy that confirmed the diagnosis of Burkitt lymphoma. This cancer is curable by chemotherapy. Surgery alone is not the correct treatment for this cancer because removal of all tumor by surgery is rarely possible and even if it can be removed, chemotherapy is always needed. While breast involvement is uncommon, it occurs primarily in pubertal girls or pregnant women.
When Safina came to us for her biopsy, her cancer had not only come back in her surgical scars, but was also found in her abdomen. Because our hospital is able to provide free treatment for Burkitt lymphoma, thanks to generous donors who contribute to this project, we started chemotherapy and Safina improved promptly. After three cycles of chemotherapy, Safina wanted to go home for a break at Christmas. Unfortunately, she did not come back to complete the rest of her treatment. We thought that this might be because she could not find the money for transportation or because she felt very well and thought she did not need any more treatment. All of our attempts to contact her failed as the phone number that she gave us was no longer in service.
In July of 2013, Safina returned to us. She was having excessive vomiting and was very weak. We did an ultrasound which revealed that Safina was 28 weeks pregnant, but that her Burkitt lymphoma had returned in her abdomen which was displacing the baby. We did a biopsy of the mass in her abdomen to definitively confirm that her cancer had come back. This was necessary because Safina was expecting a baby and we had to plan carefully how best to treat her.
In a poor resource setting like ours, we could not provide a safe delivery of her baby at this stage in her pregnancy – 28 weeks of gestation. Since the tumor was progressing fast, it was threatening Safina’s life and that of her baby. Safina was counseled about receiving chemotherapy during pregnancy – it is safe to give most chemotherapy agents required for treating Burkitt lymphoma in the last trimester of pregnancy. And, we knew we had to start treatment as soon as possible to save both of their lives. We chose effective drugs that would cause as little harm as possible to her unborn baby. Remarkably, Safina responded to treatment and the masses in her abdomen reduced in size.
Safina’s baby girl was delivered by Cesarian section at 36 weeks of gestation. The baby was healthy. Safina continued treatment after the birth of her baby. And, we were fortunate to have support to buy costly milk formula for the baby as Safina was unable to breast feed her baby – due to the bilateral mastectomy and also because she was on chemotherapy. Safina stayed in the hospital for the entire duration of her chemotherapy – even after her baby was born.
When Safina came for follow up in January, she brought her baby. We are pleased to say that Safina is in complete remission and that her baby is walking, playing and beginning to talk calling Safina her “Ma Ma”.
The story of Safina has taught us once more, how important it is for us to raise awareness and to educate other health care professionals in our region (Northern Uganda) about Burkitt lymphoma so patients can be diagnosed and treated as soon as possible at a hospital like ours. By doing this, we hope that other patients like Safina will never need to undergo unnecessary surgery and will not suffer delays in starting appropriate treatment. Her story also taught us how important it is to sustain our patients by providing free treatment and the necessary social support throughout treatment. We realize that we must continually educate our patients and their families to ensure good adherence to treatment.
Without the donations from the many people who have contributed to this project, it would not have been possible for us to save the lives of both Safina and her baby girl. We at St. Mary’s Hospital Lacor who care for the children and adolescents with Burkitt lymphoma wish to express our gratitude and appreciation for your continued support of this project.
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!
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