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Cure 250 Children with Burkitt Lymphoma in Africa

by The International Network for Cancer Treatment and Research (INCTR)
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa
Cure 250 Children with Burkitt Lymphoma in Africa

(Based on an interview with Ilong Gleasong, Oma’s father, by our Nurse in charge of the oncology and palliative care units, Claire Lalam.   (these are not the true names of the patient and father)

Oma was a healthy boy aged 14 years, who attended school regularly.  He was in primary 6 in December 2012 and appeared well and energetic at the beginning of the month.  On the 15th of December, however, he developed fever, headache and intermittent abdominal pain which rapidly worsened as his abdomen became swollen and he became progressively weaker.  Soon, he could not walk and was unable to eat.  During this time he was taken to various  health facilities where he was given repeated treatments for malaria and other common infections – such “empirical” treatment (treatment without a diagnosis) usually helps children with fevers, which are most often caused by malaria or another infection.  However, Oma did not improve.  In fact he continued to deteriorate.  Eventually he went to  APAC Hospital, where an ultrasound examination of the abdominal was performed.  This identified a large mass (lump) in the abdomen, the most likely cause of which was felt to be cancer.  Oma was therefore referred to Lacor hospital for further tests and potentially, treatment.

“When we arrived at Lacor hospital,” said Ilong, “Oma was very weak, malnourished and not even able to sit up.” 
He was also in a great deal of pain that was only partly controlled by morphine given every 4 hours.  A biopsy (tissue sample) of the abdominal mass was performed, which the pathologist reviewed and diagnosed as Burkitt lymphoma.

Treatment was started promptly and Oma has already completed the 4th cycle of chemotherapy.  “He has some vomiting on the day after the treatment,” says Ilong, but he improved very quickly once treatment was started.   His abdominal swelling had disappeared just 1 week after the 1st dose of chemotherapy.”

Oma is already playing with other boys and girls.  He is happy and seems very healthy again.  He often thinks about going back to school, and sometimes misses his siblings at home, whom he has not seen since he came to Lacor.  His home is far away and the family cannot afford to go home and come back for treatment every 2 weeks.  The father is worried about financial issues since he lives by farming a small plot of land and has a young family of 6 children to feed, the eldest being Oma and the youngest just 2 years old.  Ilong is, therefore, very grateful that he will not have to pay for the treatment.  

Ilong and Oma have a general understanding of the illness and are both very pleased that he has done so well. 
They have expressed their gratitude to the hospital for saving his life.  In turn, the hospital is grateful to all the people who have donated generously to GlobalGiving, without whose help they could not achieve this seemingly miraculous result. 



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Children waiting for treatment
Children waiting for treatment

At St Mary’s Hospital Lacor in Northern Uganda, which is part of INCTR’s Burkitt lymphoma project, drugs needed for the treatment of this cancer have been unavailable for some weeks, and key drugs have only   recently become available again.  The situation was so dire that children and their families who came to the hospital during the early autumn months were asked to travel to Kampala, Uganda to get much needed treatment there.  Sadly, the families, many of whom live on less than two (sometimes less than one) dollars a day, could not afford the transportation costs, let alone the costs associated with staying in Kampala.  Burkitt lymphoma grows very rapidly such that even if families could have embarked on the long journey from Gulu to Kampala, it was likely that some children would have died en route.  Therefore, they chose to wait at St Mary’s Hospital in the hope that the drugs, ordered three months ago, would arrive.  Consequently, new patients received only palliative care when they could have started specific therapy for their disease and, patients who already started treatment were unable to complete therapy.  Some children died while waiting for the drugs and other families simply left the hospital after giving up all hope that the drugs would ever come. 

This problem has arisen because of recent changes in the drug distribution system in Uganda, which has led to chemotherapy drugs not being stocked by many local suppliers of medicines, and markedly increased the time from ordering to receipt of drugs (all of which have to be imported), with no guarantee that the drugs will arrive when expected.  Guaranteed purchasing of specific quantities of drugs from a single company and payments made in advance at regular intervals could alleviate this situation, although more funds will be needed to initiate a system of this kind.  The team at St Mary’s Hospital is dedicated to finding a solution and is in daily contact with the drug suppliers.  They are also working with the government to ensure that non-governmental hospitals such as St Mary’s can have better access to drugs.  But, this will take time to work out.  Having sufficient funds on hand to make the advance purchase of drugs for Burkitt lymphoma is essential if patients are not to arrive at the treatment center after an arduous journey only to find that they cannot be treated anyway.  Your donations will be of enormous help to St Mary’s since they will enable the hospital to make the necessary advanced purchases to ensure that children with this highly curable cancer are given a chance to live. 

It is encouraging to be able to report that some drugs have recently arrived at St Mary’s, and that progress has been made in developing an improved system of drug purchasing and delivery that should avoid a similar occurrence in the future.  Children in other countries have continued to receive their treatment as planned, but it will be important to examine their purchasing strategies to avoid a similar occurrence. 

In this holiday season, when the thoughts of many turn to those less fortunate than themselves, please consider making a donation to help and to give hope not only to the children at St Mary’s, but to those at the several other hospitals involved in INCTR’s project.   And rest assured that we will explore what measures we can take to support our African colleagues who are doing all they can to permanently solve this problem.  We sincerely thank all of you who have donated to the project this year – without your help, many more children with a potentially curable disease would have died.   

Children and parents waiting for treatment
Children and parents waiting for treatment

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Child with BL before treatment
Child with BL before treatment

In 2011, the Bugando Medical Centre in Mwanza, Tanzania located near Lake Victoria, began work on the INCTR project to help children in this region diagnosed with Burkitt lymphoma.  Drugs needed to treat this cancer were made available through the project.  Just having the necessary drugs on hand to treat this cancer alleviated a larger burden on our team of care-givers.  Parents of the children treated for Burkitt lymphoma who initially thought that their children had an incurable disease could see the immediate results of treatment.  And, these parents have encouraged other parents with children with Burkitt’s to have hope for cure.     

Being able to provide free chemotherapy drugs is only one aspect of the project and more challenges are encountered by families- the major one being the cost of transportation to a specialized centre such as the Bugando Medical Centre.  To reach the centre in the first place, but transportation costs are also needed to ensure that we continue to know that the children we have treated such as eight year old Imelda continue to do well after treatment.

We would like to thank the donors of this important project and hope that they will continue to support it so that we can bring the hope and promise of cure to more children afflicted by this cancer.         

Child with BL after 1st cycle of treatment
Child with BL after 1st cycle of treatment
Emelda, 8 years, before treatment
Emelda, 8 years, before treatment
Emelda after treatment
Emelda after treatment

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Mama Setoni's little boy
Mama Setoni's little boy

Mama Setoni Amainge is from a Maasai Warrior tribe from Mtambo which is located past Arusha and is near Karato.

Mama Setoni’s little boy, Leikibai Pai Manywele had been very ill for a few weeks.  She first started noticing her little boy had a swelling on the left side of his face which was there for two weeks, then in the third week the eye on the same side starting to protrude. The little boy also then started experiencing problems with walking. Mama Setoni started to become very worried for her little boy.

Mama Setoni went to Selyan Hospital (where she normally goes when family members are ill) to see Dr Mohammed.

After checking the child, Dr Mohammed referred them to Muhimbili Hospital. Mama Setoni stayed in Arusha for one day, and then started her long journey to Dar Es Salaam by bus with her sister.  Luckily they had left home with sufficient funds so the trip was fine, the only setback was her little boy was very ill throughout the journey.

When Leikibai reached Muhimbili Hospital he had become increasingly worse. He was seen by Dr. Trish and was diagnosed as having Burkitts Lymphoma. He could not pass urine normally, could not eat, nor walk properly, and was throwing up. He was admitted to the Upendo ward, which is the Intensive Care Ward at Muhimbili Hospital.

Mama Setoni did not fully understand the treatment the doctors administered to her son.  She says she knows there were injections, but does not know how many or what they were for.  But once he began treatment she slowly began to see her son get better and even begin to smile again

She says her son was given a tube to help him pass urine, and as a result has become better compared to his initial condition. He is not throwing up and can walk better although still he is still experiencing some difficulties.

As his mama she feels bad and her heart is not happy when her son is ill. However, he is now smiling and happier and he feels better, and she gets happier and feels better as a result. They are due to stay on the ward for another few months in order for him to fully get better.

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Jona after treatment, ready to go fishing
Jona after treatment, ready to go fishing

I am a doctor caring for children with Burkitt lymphoma in Vanga in the Democratic Republic of Congo.  After a short break in Germany, I returned to Vanga in early January.  One of my first questions was -  how are our BL kids doing? Nina was just finishing her 6th cycle of chemotherapy.  When I left for my break, she was quite sick.  I found her in a health center 60 kilometers away from Vanga and she was barely breathing and had huge swellings on both sides of her face.  All of us at the hospital wondered if she would live.  She made it!  Now, she is smiling and running around playing.   Other children with BL came to the hospital and we had 6 of these children in one room.  Two were very sick.  One boy was permanently blind from disease affecting the nerve that provides vision.  And, an 11 year boy had a huge abdominal mass.  We asked ourselves, how will these two boys tolerate the first cycle of treatment?  We were afraid that the boy with the big abdominal mass who so sick and so weak in his bed might die of complications caused by the tumor breaking down once chemotherapy started.   Could the child who was blind tolerate treatment needed to further prevent the spread of disease to his central nervous system?  But, both Jona and Kalala came through the first cycle – although they suffered a lot during those first few days of treatment.  But, slowly and surely things changed.  Jona told me one morning, “I want to go fishing”.  So, I asked him, “Oh, do you really want to go fishing?”   What a miracle that his wish came true a few days later when Jona went fishing at the nice Kwilu River near the Vanga Hospital.  Kalala, even though he is blind, started to entertain the entire Vanga Hospital pediatric ward by singing and playing his homemade guitar.  He even taught Modia, another child suffering and recovering from BL to play the guitar.  Because these children shared one room, had the same diagnosis and treatment – and being about the same age, they have all become friends.  Just like other children, they play and dance together, try to find out who is the strongest of the six, and even share meals together.   

It was a pleasure to return to Vanga Hospital to witness this – the return to life for these children who I feared would die. 

My staff and I are so glad to be able to help children like these and to see that wonderful things can happen for children with Burkitt lymphoma in Vanga, a faraway place in the bush of the Congo.   

BL kids on the ward
BL kids on the ward
BL kids enjoying their friendship
BL kids enjoying their friendship

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Project Leader:
Melissa Adde
Brussels, Brussels Belgium
$98,072 raised of $99,900 goal
 
756 donations
$1,828 to go
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