Children
 Uganda
Project #9630

Cure 250 Children with Burkitt Lymphoma in Africa

by International Network for Cancer Research and Treatment (INCTR)
Vetted
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!  

Safina
Safina's Baby Girl

At the age of only 17 years old, Safina developed swelling in both of her breasts.  In July of 2012, she sought help at a regional hospital.  The doctors suspected that she had advanced breast cancer.  They performed a bilateral matectomy and she was discharged home, but without a histological diagnosis.  Several weeks later, Safina developed masses in her surgical scars.  In October of 2012, she was referred to our hospital-  St. Mary’s Hospital Lacor-  for a biopsy that confirmed the diagnosis of Burkitt lymphoma.  This cancer is curable by chemotherapy.  Surgery alone is not the correct treatment for this cancer because removal of all tumor by surgery is rarely possible and even if it can be removed, chemotherapy is always needed.  While breast involvement is uncommon, it occurs primarily in pubertal girls or pregnant women.  

When Safina came to us for her biopsy, her cancer had not only come back in her surgical scars, but was also found in her abdomen.  Because our hospital is able to provide free treatment for Burkitt lymphoma, thanks to generous donors who contribute to this project, we started chemotherapy and Safina improved promptly.  After three cycles of chemotherapy, Safina wanted to go home for a break at Christmas.  Unfortunately, she did not come back to complete the rest of her treatment.  We thought that this might be because she could not find the money for transportation or because she felt very well and thought she did not need any more treatment.  All of our attempts to contact her failed as the phone number that she gave us was no longer in service.    

In July of 2013, Safina returned to us. She was having excessive vomiting and was very weak.  We did an ultrasound which revealed that Safina was 28 weeks pregnant, but that her Burkitt lymphoma had returned in her abdomen which was displacing the baby.  We did a biopsy of the mass in her abdomen to definitively confirm that her cancer had come back.  This was necessary because Safina was expecting a baby and we had to plan carefully how best to treat her.   

In a poor resource setting like ours, we could not provide a safe delivery of her baby at this stage in her pregnancy – 28 weeks of gestation.   Since the tumor was progressing fast, it was threatening Safina’s life and that of her baby.  Safina was counseled about receiving chemotherapy during pregnancy – it is safe to give most chemotherapy agents required for treating Burkitt lymphoma in the last trimester of pregnancy.  And, we knew we had to start treatment as soon as possible to save both of their lives.  We chose effective drugs that would cause as little harm as possible to her unborn baby.  Remarkably, Safina responded to treatment and the masses in her abdomen reduced in size.  

Safina’s baby girl was delivered by Cesarian section at 36 weeks of gestation.  The baby was healthy.  Safina continued treatment after the birth of her baby.  And, we were fortunate to have support to buy costly milk formula for the baby as Safina was unable to breast feed her baby – due to the bilateral mastectomy and also because she was on chemotherapy.  Safina stayed in the hospital for the entire duration of her chemotherapy – even after her baby was born.   

When Safina came for follow up in January, she brought her baby.  We are pleased to say that Safina is in complete remission and that her baby is walking, playing and beginning to talk calling Safina her “Ma Ma”.  

The story of Safina has taught us once more, how important it is for us to raise awareness and to educate other health care professionals in our region (Northern Uganda) about Burkitt lymphoma so patients can be diagnosed and treated as soon as possible at a hospital like ours.  By doing this, we hope that other patients like Safina will never need to undergo unnecessary surgery and will not suffer delays in starting appropriate treatment.  Her story also taught us how important it is to sustain our patients by providing free treatment and the necessary social support throughout treatment.  We realize that we must continually educate our patients and their families to ensure good adherence to treatment.  

Without the donations from the many people who have contributed to this project, it would not have been possible for us to save the lives of both Safina and her baby girl.  We at St. Mary’s Hospital Lacor who care for the children and adolescents with Burkitt lymphoma wish to express our gratitude and appreciation for your continued support of this project. 

Two Happy Boys After Treatment
Two Happy Boys After Treatment

Dr. Roberto Ferrara, an INCTR faculty member, recently spent three weeks on the children’s cancer ward at St. Mary’s Hospital, Lacor in Uganda to work on INCTR’s on-going project in Burkitt lymphoma. The hospital sees 80 new children with this cancer a year, but sadly many come too late with such advanced disease that they cannot be treated effectively. St. Mary’s Hospital is the only major center in Northern Uganda able to treat this type of cancer. Because their results are so promising – over 70% of children who reach the hospital in time are cured, Dr. Ferrara assisted the staff and parents of children in creating an educational film about Burkitt lymphoma. This will be widely distributed to health care personnel and the public in the region.  

The film was made in the local language, Acholi. Dr. Felix Bongamyn, an intern in training in pediatrics at St Mary’s, underlined the importance of early diagnosis. As Dr. Felix stated, “without specific treatment, Burkitt lymphoma can progress very quickly and the child can die in a few weeks”. He went on to say that “even a few days can make a difference” to a child’s outcome so that it is important not to delay coming to the hospital for treatment as soon as initial signs are noticed. He emphasized that Burkitt lymphoma is not caused by an “evil spirit” – as many Africans believe, nor is it a punishment for failing to appease a tribal God. It is a cancer that can be cured, if diagnosed and treated as soon as possible.    

Sister Claire, the nurse who cares for the children, spoke to parents about the need for their children to complete all planned treatment in order to have the best chance for long-term survival. Parents whose children were successfully treated recounted their personal experiences. One father told the story of how his child was paralyzed as a result of Burkitt lymphoma, but after treatment, the child could walk again.

Volunteers like Dr. Ferrara, who assist doctors, nurses and parents to “get the message out” that Burkitt lymphoma can be cured, are a valuable resource to this project. And, without the dedication of the staff at St. Mary’s Hospital and without their willingness – along with parents of children affected by this cancer - to participate in the production of the film, such a powerful and effective way of “spreading the word” to others in Northern Uganda would not have been possible. Most importantly, without your donations, the staff at St. Mary’s Hospital would not have been able to treat and cure so many children with Burkitt lymphoma.  Thank you to everyone who has contributed to this project and given children with this cancer the hope for cure!

Little Boy Receiving Treatment for BL
Little Boy Receiving Treatment for BL

Three parents of children recently treated for Burkitt lymphoma at the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC) in Ile-Ife, Nigeria, wished to express their thanks to all of the generous donors who made treatment possible for their children.

Alimot, a 10 year old girl was ill for about four weeks before she was admitted to the OAUTHC in Ile-Ife. Her parents tried to treat her symptoms at home, but without success. Alimot’s mother stated, “I am very happy to write a letter to you because my child is doing well” since she started chemotherapy.  She also sends her blessings of good will to all of the donors who contributed to this project.

Alani, another little girl of 6 years old had symptoms of Burkitt lymphoma for four weeks. But, Alani lived a great distance – some 150 kilometers away - from the Ile-Ife hospital. A hospital closer to her home could not help her and so she and her mother made the long journey to Ile-Ife, where she could get free chemotherapy, courtesy of your kind donations. Her mother wrote, “I am happy because I see the use of the drugs working like a miracle” and that “I had lost hope before”. Alani’s mother thanked everyone who has given to the project so that her child could get the help she needed.

A little boy, aged 7 years named Abdul was sick for some 6 weeks. A hospital nearby his home tried to care for him, but couldn’t provide him with the proper treatment and referred him to the OAUTHC in Ile-Ife. Abdul’s father wrote that he is “very happy that the medicines are working well” and helping his son to get better. He sent his best wishes to everyone who has given and has expressed his thanks.

Although there is national health insurance in Nigeria, sadly, it does not cover children like Alimot, Alani and Abdul who have cancer. Your donations help children to be able to receive the treatment that they need and to give them a chance to be cured. Their parents’ expressions of gratitude reflect how much your donations mean to children and their families who otherwise would not be able to afford treatment of this very curable childhood cancer called Burkitt lymphoma.     

Alfa Showing Her Smile of Thanks
Alfa Showing Her Smile of Thanks

Alfa is a delightful 6 year old girl who epitomizes the stoicism and determination of many children who are patients here at St. Mary’s Hospital, Lacor - always with a smile on her face.

I met Alfa last September after she made the 164 kilometer journey with her father from her home in Nebbi to St. Mary’s Hospital, Lacor. An arduous journey at the best of times, the stakes were raised yet further by Alfa’s illness; she was weak, feverish and in pain. Over the previous 3 months, she had been experiencing worsening pain in her stomach along with swelling of her jaw. Treatment at her local hospital made no difference and she was later referred on to St. Mary’s Hospital; one of only three hospitals in the country where childhood Burkitt lymphoma can be treated.

She continued to deteriorate after she arrived at the hospital, becoming unable to stand or walk as the cancer affected the nerves in her body. She was quickly diagnosed and given life-saving chemotherapy drugs. It remained an uphill battle. But, with many hours of physiotherapy and support from both her father and the ward team, she improved dramatically. On her last day of treatment she very proudly showed off her ability to walk again as she came down the ward to greet me.

Remaining on the ward for such a long time was both costly and emotionally draining for the family. Without the funds, and associated hope that donors have so generously given, it would not have been possible to support her and her father through this. Of critical importance to Alfa was the ability for us to immediately give the expensive chemotherapy and physiotherapy; without this she would likely have remained paralyzed for life.

Alfa remains in excellent health and continues to get stronger. Due to her extreme shyness, her smile is her only outward expression of her thanks, though she did whisper to me that she is busy practicing to try and outrun her brothers once again. However, her father was very keen that we openly convey his deepest gratitude to all of the donors. He does not like to think about what would have happened without the funds that have been raised through this project and he asked us to say, “God bless you all”.

Alfa and her Father
Alfa and her Father
 

About Project Reports

Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

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
$61,757 raised of $75,000 goal
 
 
349 donations
$13,243 to go
Donate Now Add Project to Favorites

Help raise money for this important cause by creating a personalized fundraising page for this project.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter
WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.