International Network for Cancer Research and Treatment (INCTR)

INCTR is dedicated to helping to build capacity for cancer prevention, treatment (including palliative care) and research and to improve access to needed care in order to lessen the suffering and limit the number of lives lost from cancer in developing countries.
Dec 1, 2015

Moving Forward in Africa

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!

Aug 26, 2015

Philip's Story

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!

May 28, 2015

Bernard - A Story of Courage

Bernard
Bernard

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!  

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