Our hospital, St Mary’s Hospital Lacor in Gulu is located in Northern Uganda in sub-Saharan equatorial Africa. One of the most common childhood cancers that we see is Burkitt lymphoma (BL). The incidence of BL is considerably higher in Ugandan children than it is in the USA or Europe. Although BL is a rapidly growing tumor, it responds extremely well to treatment that consists of chemotherapy alone.
In our experience, the vast majority of the families whose children are diagnosed with BL live below the poverty line. Accessing chemotherapy for treatment of this highly curable cancer was once only a dream for these vulnerable families. But, thanks to donors and well-wishers, such as all of the wonderful people who have contributed to this project, the children are able to receive the chemotherapy that they need. And, their families receive support for other necessities such as food during their child’s hospitalization.
We wish to share the story of VO who benefited from this project. He was eight years old when he came to St Mary’s Hospital. Prior to admission, he had a one month history of swelling in his left jaw that was associated with pain and excessive sweating. The mass in his jaw was so large that the left side of his face appeared to be almost twice the size of the right side of his face – giving him a distorted appearance. Once the diagnosis was confirmed as BL, he was started on chemotherapy. He completed all planned chemotherapy and has been cured of BL for more than two years. In addition, he fully recovered from the disfiguring effects that were once caused by what we would typically call a “Burkitt’s face”. He has returned to school, enjoys playing with his mates, and looks like a normal child.
One parent whose child also benefited from the treatment program supported by donations coming from this project had this to say, “After my child developed abnormal swelling on the face, I thought it was a demonic power causing this. I wasted time and money seeking the service of a traditional healer in vain. When my child received chemotherapy from Lacor Hospital, the swelling reduced quickly as if the doctors used magic. Besides it was free of charge and now my child is healthy and happy again. God should continue blessing the sponsors of the cancer treatment program’’.
In addition to treating children with BL at our hospital, we work with a network of hospitals in our region and their communities in order to ensure that children with suspected BL come to our hospital as soon as possible. Our goal is to make every person, including health care workers, aware of the signs of BL so that treatment is sought earlier and to ensure that not only health workers, but also the public know that our hospital is able to offer chemotherapy free of charge thanks to your generous donations to this project.
Our patient, Faith, is a 5 year old girl who comes from a remote village located on a riverbank in South Western Nigeria where there is no road network and easy access to a health care facility. A month prior to admission to our hospital, the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC) in Ile-Ife, Nigeria, Faith became ill with abdominal swelling accompanied by severe pain, weight loss and fever. Her father who is a spiritual healer attempted to treat Faith, but realizing that his efforts were not working, he sought help from the nearest health facility. The family had to take a speed boat on the river to reach this center – a journey that took an hour and a half. She was seen by a pediatrician who suspected that Faith may be suffering from cancer. Because this hospital lacked the necessary expertise and capacity to manage her care, Faith was referred to our hospital. It was fortunate that the referring pediatrician had trained with us and was familiar with the signs of Burkitt lymphoma (BL). Faith was transferred to our hospital immediately – although it took her and her parents some four hours to reach Ile-Ife via public transport from the referring hospital. This was in October, 2016.
When she came to us, Faith was very weak and could not stand on her feet. She was also noted to be grossly anemic, in addition to having the other symptoms as described by the referring doctor and her parents. We also noted that she had fresh scarification (“cutting”) marks all over her abdomen – indicating to us that traditional methods of care had been used. Because Faith’s father is a spiritual healer, he had been administering local traditional medicines to her in addition to performing the abdominal scarification that we observed. He had hoped that Faith’s abdominal swelling would go away and wanted only to help his daughter the best way that he knew how. The use of these traditional approaches along with the family’s limited access to any type of health care facility contributed to the delay in receiving medical help.
After Faith was admitted to our hospital, she was quickly evaluated for a suspected diagnosis of BL. Due to severe anemia, we had to administer blood transfusions in order to stabilize her. Once we established that her diagnosis was BL, she was immediately started on chemotherapy. By the end of the first treatment cycle, her condition improved dramatically and her abdominal masses were barely palpable.
Her father – who had never left her side – exclaimed during our ward rounds that the doctors at our hospital were second to God. We believed that this declaration must have been due to the fact that he could not heal his daughter even though he was a known spiritual healer within his local community.
At the time of this report, Faith has completed five of the 6 cycles of therapy she needs to ensure the best possibility of long-term cure for her BL. Her parents, especially her father wishes to express “Modupe” – which in Yoruba, the local language of South Western Nigeria, means, “I am grateful” to the GlobalGiving community of donors whose generosity has provided Faith with the possibility of a bright future – free of cancer and the opportunity to live a normal life.
Our team at OAUTHC also wishes to thank the generous donors who have given to this project. Without your donations, we would not have been able to provide Faith with the necessary drugs and blood transfusions that she needed. More importantly, we, as a team, have been able to change her father’s orientation towards health-seeking behaviors. As a result, her father has promised to start educating the people in his community to seek medical assistance early, if they become as ill as Faith. We think that this will help a great deal because Faith’s father is believed and respected very much as the local community’s spiritual healer.
Sordiq was 13 years old when his father brought him to our hospital, the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC) in Ile-Ife, Nigeria. Three months prior to his admission to our hospital, he had developed a painless swelling of his left jaw. His parents admitted to initially giving their son traditional medicines, but when these failed, they took him to a local health facility near where the family lives. The health facility decided to perform surgery to remove the jaw mass. Following surgery, the doctors placed him on pain medications and antibiotics and assured Sordiq’s parents that he had been “cured” of the problem with his jaw. He was then sent home. The family never received a report of what the jaw mass actually was.
Unfortunately, Sordiq’s jaw swelling returned. Because his father was so disappointed in the outcome of the surgery, he and Sordiq traveled some 65 kilometers from their home in the town of Ikirun for care at our hospital. At the time Sordiq presented to our institution, he was found to have recurrent left jaw swelling and abdominal masses. We suspected that he had Burkitt lymphoma (BL) due to the classic appearance of his jaw mass along with the presence of abdominal disease. He was quickly evaluated and after the diagnosis of BL was confirmed, he was begun on treatment.
After the 2nd cycle of chemotherapy, his abdominal masses had disappeared and his jaw mass had become much smaller. His parents thought this was a miracle. They were so motivated by this result that they brought him back to complete all planned therapy – something that doesn’t always happen in a country such as ours – particularly when parents see a rapid resolution to their child’s cancer without understanding that completing all planned therapy ensures their child’s best chance for cure. Sordiq’s parents ensured that he never missed his appointments and at the end of therapy, he had complete resolution of his abdominal masses and his jaw mass. He has now returned to school and is doing very well.
Sordiq’s story highlights three points that need to be made about BL. Traditional medicines, although ineffective in the treatment of BL, are often used. Using these types of medicines delays diagnosis and treatment and thereby can increase the risk of treatment failure. In not getting to a specialized center such as ours, the diagnosis was missed by the initial health facility that he was treated by. Furthermore, surgery alone will not cure BL. Without chemotherapy, tumors removed by surgery will grow back just like in Sordiq's case. And, BL is usually a widespread disease within the body and therefore, not amenable to surgery. BL is one of the cancers that can be cured by chemotherapy alone – making surgery unnecessarily risky and can lead to severe disfigurement and permanent disability.
Sordiq’s parents wish to be convey their thanks not only to our team here in Ile-Ife who took care of him, but also to all of you – who through your donations – made it possible for him to have free chemotherapy and the opportunity to live his life like any other teenager his age.
Kaosara is a 10 year old girl who lives with her parents in a town called Odeomu in Osun State, Nigeria. In November, 2015, she developed rapidly progressive, but painless masses on both sides of her jaw. This was mistaken for parotitis, an infection of the salivary glands, which is often referred to as mumps. Mumps is called “shegede” in the local language where Kaosara lives. According to traditional treatments, Kaosara was asked to mouth-breathe into a cracked wall early in the morning as a remedy for her problem. Unfortunately, after one week, there was no improvement and her parents took her to a private hospital where she received additional treatment for about three weeks. However, her condition worsened and she was referred to our facility, the Obafemi Awolowu University Teaching Hospitals Complex (OAUTHC) in Ile-Ife.
When she came to our hospital in early January of this year, Kaosara had marked swelling of both of her jaws and bleeding of the gums. It was difficult for her to swallow, talk and breathe because of the size of her jaw masses. She also had a paralysis of one of her cranial nerves. This particular cranial nerve controls the muscle involved in the lateral gaze of the eye and, when compressed, causes double vision. After confirming the diagnosis of Burkitt lymphoma which was at an advanced stage, we started chemotherapy immediately. After just the first cycle of therapy, her jaw tumors had resolved and she was left with only a slight paralysis of the cranial nerve. During our ward rounds, her mother confessed that this was a big miracle.
Her story demonstrates how important it is for a child suspected of having a highly curable cancer such as Burkitt lymphoma to be referred immediately to a center such as ours. Traditional cures were started first which were followed by a lengthy stay in a hospital not capable of making the diagnosis. Although long distances often prevent parents from obtaining appropriate treatment for their children with cancer, in this case, Kaosara’s home town was only a 45 minute drive away from our hospital.
Social circumstances also came into play during treatment. Kaosara’s mother, who stayed with her during treatment, lost her income as a petty trader. Her mother received no financial support from the family for Kaosara’s care. Good Samaritans paid Kaosara’s hospital bills and your donations paid for her chemotherapy. Her mother wishes to thank all of you all for your generous support for this project which enables children with Burkitt lymphoma like Kaosara to have hope for cure because now,with the correct treatment, many children can be cured.
Barakat was 19 years old and Ajarat was 11 when their mother passed away. This left Barakat responsible for the care of her three younger siblings, including little sister, Ajarat, while their father worked some 600 kilometers away from the family home.
When Ajarat was 12 years old, Barakat noticed that Ajarat had a painless swelling of her jaw and loosening of her teeth. This worsened over a two month period. Barakat initially took her little sister to a state hospital. This hospital, in turn, referred them to our hospital for specialized care for what was suspected to be Burkitt lymphoma. Our hospital, the Obafemi Awolowo University Teaching Hospitals Complex in Ile-Ife, Nigeria is located some 80 kilometers away from the state hospital which made this a costly journey for the two sisters to make. It was largely for financial reasons that Ajarat was delayed in reaching our hospital. When she finally arrived, she had advanced disease, not only in her jaw, but also in her abdomen.
After Ajarat was admitted to our hospital, we did all of the necessary investigations and confirmed the diagnosis of Burkitt lymphoma. She was started on treatment and the response was dramatic. Her sister telephoned their father to inform him of the good news. The father was finally able to make his way to our hospital and was impressed by the results of Ajarat’s treatment. After counselling, the father promised to ensure that Ajarat completed all of the planned treatment – 6 cycles in total. Ajarat was discharged to home after two cycles of treatment in order to ease the financial burden of the costs of hospitalization and the costs associated with her and Barakat staying far away from home. Barakat was also needed at home by her other siblings and to tend to household matters.
Things went well – with Barakat doing the best that she could to ensure that her sister returned for treatment on time. Sadly, their father died very suddenly at the time of the 5th cycle of treatment. Following the death of their father, Barakat was unable to bring Ajarat back to the hospital to complete treatment because of her increased responsibilities for the care of her family that she then had to shoulder all alone. But, Barakat continues to remain in touch with us to let us know about Ajarat's health. She says that Ajarat has no signs of cancer and is in good health. Ajarat has now returned to school.
Ajarat’s story has many messages about how cancer places financial burdens on poor families in Africa. The great distances to one of the few treatment centers capable of diagnosing and treating a cancer such as Burkitt lymphoma often result in delays in starting treatment because travel to such centers is usually very expensive. The loss of a parent means that an elder sibling, like Barakat, becomes responsible for the care of his or her siblings. Parents may be unwilling to use scarce resources on a child with cancer, largely because of the belief that cancer is always fatal. Furthermore, it is often difficult to complete treatment – again because of the finances required to travel to and from the hospital and the costs associated with hospitalization. This can result in a significant loss of income required to sustain a family. Therefore, families of children with Burkitt lymphoma are dependent on the kindness of donors such as you to help cover the costs of the chemotherapy for this highly curable cancer. Ajarat’s sister, Barakat, wishes to thank those who gave to this project because she says, “the help you have rendered has been everlasting”.
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