Children
 Uganda
Project #9630

Cure 250 Children with Burkitt Lymphoma in Africa

by International Network for Cancer Research and Treatment (INCTR)
Vetted
Kaosara and Her Mother After Treatment
Kaosara and Her Mother After Treatment

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.

Ajarat (left) and Barakat (right)
Ajarat (left) and Barakat (right)

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”.  

Dr Calbi, Rebecca and Her Mom (on right)
Dr Calbi, Rebecca and Her Mom (on right)

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! 

INCTR Working on the Ground at St Mary
INCTR Working on the Ground at St Mary's Hospital

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:

  • Education and training of the staff at the two specialist hospitals in order to improve the overall quality of care delivered, including nursing care
  • Staff at district hospitals and clinics in the catchment areas of the specialist hospitals have been educated in the signs of BL and provided with referral guidelines for suspected cases
  • These two efforts have been greatly aided by the development of training tools for both staff at the specialist hospitals and at the district hospitals and clinics
  • Collaborations have been established with other local NGOs to provide services such as housing for patients and families in between treatment cycles, food, transportation to and from the hospitals, and home visits to ensure that the children are doing well after treatment
  • For the first time, the survival rate of patients treated by the two specialist hospitals can be calculated and the assumption that cancer is incurable is being overcome
  • The demonstration of high survival rates has greatly encouraged the health care providers and has even influenced younger doctors to train as oncologists whereas before oncology was viewed as end-of-life care
  • Public awareness through community out-reach – via antenatal clinics, childhood vaccination clinics and by going directly into the communities themselves to educate the general public about the curability of this cancer has been markedly enhanced so that more people are informed. This has led to more patients being referred earlier
  • Letting parents of children with BL participate in forums with the staff in order to have a voice in what can and needs to be done in order to ensure that the psychosocial care of children with this cancer or any other childhood cancer can be continuously improved.

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 with his Mother and Little Sister
Philip with his Mother and Little Sister

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!

 

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Organization Information

International Network for Cancer Research and Treatment (INCTR)

Location: Brussels - Belgium
Website: http:/​/​www.inctr.org/​
Project Leader:
Melissa Adde
Brussels, Brussels Belgium
$61,237 raised of $75,000 goal
 
 
344 donations
$13,763 to go
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