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.
Feb 24, 2016

My Gift from Rebecca

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! 

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!

 
   

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