Rebecca was 7 years old when she was referred to our hospital by a distant and small hospital in eastern Uganda. She had lower leg swelling on both sides of her body that had started four months before. And, in the three weeks prior to admission to our hospital, St Mary's Hospital, Lacor, she developed abdominal distention and swelling in her lower jaws.
Before she was able to come to St Mary’s, her family had to prepare for the long journey and they had to seek money to sustain not only Rebecca, but her mother and baby brother who was still breast feeding. The family knew from the referring hospital that Rebecca would have to remain far from home during treatment. Unfortunately, just a few days before her departure from the referring hospital, Rebecca developed lower leg weakness and became unable to walk or stand without support. Then, she suddenly became paralyzed.
When she arrived at St Mary’s, we felt that she had all of the features of Burkitt lymphoma – especially considering the typical feature of jaw involvement. We did all of the investigations very quickly because we knew that her disease was progressing very rapidly and we wanted to initiate treatment as quickly as possible in order to avoid any permanent damage to her spinal cord because this would result in her never being able to walk again. We performed a biopsy of her abdominal tumor which confirmed our diagnosis – Rebecca had Burkitt lymphoma. By this time, she was very sick and could not sit at all.
Treatment was started as soon as possible after the diagnosis was made. Rebecca improved slowly, but soon after treatment she was able to sit in the bed and feed herself without help from her mother. When she was more stable, physiotherapy was started with passive exercises. Her mother learned to help Rebecca with these exercises. Her mother was also very careful in attending to her – attempting to mobilize her gently in order to try to prevent her from developing bed sores. After the 3rd cycle of treatment, Rebecca’s tests showed that she had complete resolution of her tumor.
One morning, during our ward rounds on all of the children, Rebecca gave me a priceless gift. I was examining another little child when she came towards me very slowly walking with just the support of the ward beds to guide her along. She was just a bit unstable because her legs had become so thin. She took five steps all by herself. I was so surprised because I was so used to seeing her in a wheelchair or being carried by her mother. She was smiling at her accomplishment!
Moments like these make working with the children with this cancer so rewarding and professionally meaningful. I was amazed by how much improvement Rebecca had made. This was due to Rebecca and her mother’s commitment to treatment because they both never lost hope or belief that Rebecca would walk again.
Seeing Rebecca walk again was also gratifying because many children with this cancer who present with paralysis often remain unable to walk again because they reach us when the cancer is so advanced that it has permanently damaged their spinal cords. Although they can be cured, they are never able to walk again.
We, at St Mary’s Hospital thank the people who are so loyal in giving to this project. It helps us to provide free treatment to children with Burkitt lymphoma. With your support, we are often able to give back smiles to parents and to save the lives of children who would otherwise have died. Thank you again for your kind donations!
Burkitt lymphoma (BL) is one of the most common childhood cancers in equatorial Africa. BL is also one of the most aggressive cancers and is fatal if left untreated. However, it is highly curable with chemotherapy alone. Sadly, many children never reach specialized centers such as St Mary’s Hospital Lacor in Uganda or the Bugando Medical Center in Mwanza, Tanzania where treatment for this cancer is available. There are many complex reasons for this. Most of the families live in remote or rural regions that make travel to these hospitals difficult. For these families, the costs of transportation alone can use up the entire family income for a year. And, if they do seek medical help at district hospitals or clinics, often the personnel who see them do not recognize the signs of BL which results in delays in prompt referrals to these specialist hospitals. When they do arrive at the specialist hospitals, they often have such advanced disease their chances of survival are low. And, for those patients who have a chance for cure, they rarely have sufficient funds to cover the costs of diagnosis and treatment without becoming completely impoverished. Doctors generally only address their relationships with the patients who they treat and assume that intermittent unavailability of drugs and lack of social services are normal. For these reasons, INCTR – in collaboration with these two hospitals – decided to address the broader issues pertinent to the care of BL such as ensuring that children are referred for treatment as soon as possible. In the past few years, things have moved forward. Because of your donations to this project, funds are available to provide treatment free of charge to the children.
Alleviating the burden of the costs of treatment for the children and their families has enabled the staff to develop a comprehensive “model of care” for children with BL. By a model, we mean to say that all aspects of high quality treatment, including all of the issues mentioned above are being addressed. Efforts are on-going and include these examples:
INCTR became involved in the treatment of BL in 2004. To date, more than 800 children have been treated. Our project with Global Giving began in late 2010 and since that time, 350 children have benefited from your donations and have received the necessary chemotherapy drugs for their treatment. Results are excellent - given the resources in most of the hospitals. Overall, the cure rate is 62% for all centers combined, but at St Mary’s Hospital, it is over 70%.
With your continued support, more can be done to constantly improve the results of treatment for these children and ensure that no child is excluded because of poverty. Because of your support, a new mind-set into tackling the broader scope of the problem at the level of the community as well as the hospital level has evolved. Involving district hospitals and clinics, dealing with the many psychosocial issues the families face, and getting the public involved – even in the villages where the families come from - will only increase these children’s chances of cure and ensure that they live long, normal and happy lives. Thank you again!
Philip was nearly 5 years old when he was brought to our hospital in June of 2011. Since his birth, he has lived in a hut with his parents, two brothers and a sister. Both of his parents are peasant farmers and were never able to complete basic primary school education. During the rainy season in 2011, Philip began to have swelling in his abdomen. This only began a few weeks before he came to St Mary’s Hospital. During this time, his abdominal swelling increased in size very quickly. By the time he was brought to our hospital by his mother, he had many large masses of tumor throughout his abdomen. He was also very weak and almost unable to walk. A biopsy was performed promptly which determined that he had Burkitt lymphoma. Therefore, chemotherapy was started promptly along with intensive supportive care due to the extent of his disease. Thankfully, he responded very well to treatment.
His mother understood that Philip’s Burkitt lymphoma could be fatal if he did not complete all planned treatment. She struggled, but managed to bring him on time for all of his planned treatment. Meanwhile, Philip’s father continued to work hard in the farming fields in order to sustain the entire family. In spite of having support for the costs of treatment, Philip’s mother – like other parents with children undergoing cancer treatment on our ward – had to find “day” work nearby the hospital in order to be able to have food for both of them. It is not uncommon or unusual that most parents of children undergoing cancer treatment on our ward need to find day work. And, they take turns looking after other parents’ children so that these parents can work, too.
Philip recently came back to see us at St Mary’s Hospital. He is 9 years old now. He is in excellent health and cured of his lymphoma. He has grown like a normal child. He is doing well in school, too. When he is not at school, he helps his parents to look after their vegetable garden so that they have enough to eat. His mother is very proud of him – because he is healthy, doing well in school and taking on family responsibilities – including looking after his little sister.
Donations such as the ones made by the many donors to this project have supported treatment costs, which, in turn have alleviated a large financial burden on parents such as Philip's. Thanks to all who have given and to those who continue to give their support for this project!
Bernard was brought to the pediatric ward at St Mary’s Hospital Lacor on a very busy day in May, 2014. We were making our ward rounds to check on all of the children. The scene was very chaotic – the patients were hugging their mothers, others were lining up waiting to be seen by the doctors, other children were waiting to receive their chemotherapy and some of the children were playing while waiting for orders to be discharged. Suddenly, a young man came onto the ward carrying four year old Bernard who was wrapped in a blanket and dropped him on a bed. Bernard was in desperate need of medical care and all things were put to one side so that he could be assessed immediately.
Bernard was shivering and barely conscious. He was very malnourished. He had generalized swelling all over his body - his abdomen was very distended and his face was deformed by large jaw masses on both sides of his face and swelling of the orbits of his eyes such that his eyes could not even be seen. He was paralyzed. Additionally, he had many ulcers in his legs and also one on his back that was so deep that we could see the surface of his bones. These were also infected. We worked him up as quickly as possible to prepare him for treatment for suspected Burkitt lymphoma.
The young man who brought Bernard to us was asked questions by a nurse about how he came to be in such a condition. We learned that Bernard had been living with relatives in a village in a very remote rural area. After his father had died, his mother had re-married, but her new husband would not allow her to keep Bernard once she became pregnant with his child. Bernard was then sent to live with his father’s relatives. The young man who brought him to St Mary’s was his older brother. He was told by the relatives that Bernard was dying so he went to see him, but he did not want to give up hope for his younger brother. He took Bernard to our hospital on his motorcycle and they had to travel a long distance before reaching our hospital.
Once Bernard was stabilized and his diagnosis was confirmed as Burkitt lymphoma, we started chemotherapy. We had to reduce the initial doses of chemotherapy given to him because of his poor kidney function. We monitored him very closely before and after we started treatment – knowing any let up in surveillance could result in complete renal failure and death. Even with all of these precautions, we were not sure if we could save little Bernard. Within a few days of starting treatment, the swelling all over his body began to decrease as did the masses in his abdomen. When the swelling in his face caused by the tumors in his jaws and in the orbits of his eyes disappeared, we learned that Bernard was blind from the pressure that his disease put on the nerve that controls vision. He also started to become more alert, but one mystery we were unable to readily solve was that Bernard could not stop crying. He would not talk to us, he would only cry. Because people from other regions in Uganda speak different languages, we were lucky to have a nurse who could speak his language. It became clear to us that he wasn’t in pain, but being blind and paralyzed, he was scared and all he wanted was his mother.
Through generous donations made to this project, we located his mother and provided the funding for her to come to St Mary’s Hospital to be with her little boy. When she came, Bernard stopped crying – her voice and her touch comforted this very frightened little boy.
Bernard stayed with us at the hospital for the entire duration of his treatment and a bit longer to allow the pressure sores to heal completely and to receive physical therapy. In spite of his very advanced disease and all the complications he faced, he responded to treatment very well and gained weight. He could even sit without support and was able to feed himself again. He started to see some shadows and lights, but he never regained the use of his legs – the damage caused by the tumor was irreparable. He liked to hear music being played on a radio which made us all happy.
Just this month, Bernard came back to us for a follow up visit. He was in complete remission at one year from the start of his initial treatment – relapses are extremely rare after this time. Sadly, Bernard was not able to return to live with his mother, but with support, his brother and his wife took Bernard to live with them and he is cared for very well.
A child such as Bernard who was extremely poor was able to be treated for free thanks to generous donations made to this project. But, his story taught us that we need to be able to do more to prevent children from coming to us with such advanced disease by educating people in the rural villages about the signs of this highly curable cancer. It brought home to us that there are many social factors that can impact any sick child such as living with distant relatives with no financial means for transportation to a far away hospital and other children to care and provide for. Without his brother’s intervention, Bernard would surely have died. If Bernard had been brought to us sooner, he probably would be walking and playing like any other 5 year old boy. But, in spite of everything, Bernard is happy and free of cancer.
Because we are able to provide free treatment through generous donations made to this project, we can also focus on the other needs these very poor families of children with Burkitt lymphoma have. Thanks to all of you who have given and continue to give to this project!
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.
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