Mar 2, 2020

Wilms Tumor Mistaken for Malaria

Raphaella and her Mother
Raphaella and her Mother

Raphaella came to our hospital, St Mary’s Hospital Lacor in Gulu, in November of 2018 when her father decided to bring her to us because she was not improving with treatment given to her by their local health center. The doctors at the health center thought that Raphaella had a hyperactive malaria syndrome and treated her with anti-malarial drugs for many months.

Her father explained that Raphaella had a 7 month history of progressive abdominal distention that was associated with pain, intermittent fevers, and weight loss. Two weeks prior to admission, she developed chest pain associated with a cough. Further complicating her problems was that Raphaella had known epilepsy which was not properly controlled – her parents could not afford the costs of transportation to obtain the necessary drugs to treat this condition.

Upon admission, Raphaella was very sick. She had a grossly distended abdomen and was severely malnourished. We immediately began tests and found that she had an enlarged left kidney and that disease had spread to her spleen, liver, and lungs. A biopsy was performed which confirmed our suspected diagnosis of Wilms tumor – a type of childhood cancer that arises in the kidney. In our setting, Wilms is treated with pre-operative chemotherapy before we surgically remove the affected kidney (nephrectomy). A nephrectomy, which is a necessary part of treatment for Wilms tumor, is followed by post-operative chemotherapy for a period of time. We were heartened that after 8 weeks of pre-operative chemotherapy, the lesions in her liver, spleen and lungs had completely resolved. She, then, underwent a successful removal of her left kidney.  Unfortunately, Raphaella developed several post-operative complications and required two more surgeries, including a colostomy.  This meant that we had to delay her post-operative chemotherapy for nearly 8 weeks to allow her to recover from these extra surgeries.

Once Raphaella started post-op chemotherapy, she suffered all of the challenges associated with the known side effects of the drugs used. At one point, she developed such a severe infection due to her low levels of infection fighting white blood cells that she nearly lost her life. But, Raphaella was such a fighter and she survived. She stayed at the hospital’s Family Home during treatment to ensure that we could deliver chemotherapy on time and monitor her closely so that we could intervene promptly when treatment-related complications arose. Raphaella completed all chemotherapy in October 2019. We are pleased to report that she is free of cancer and that we were able to close her colostomy. With appropriate anti-seizure medications, her epilepsy is now well-controlled. She returns to St Mary’s for regular follow-up visits.

Raphaella’s story reminds me how necessary it is to improve and intensify public and health workers’ awareness about the signs and symptoms of childhood cancer at the community level so that referrals of children with suspected cancers can be made as quickly as possible.

It also taught me that children with cancer - no matter how extensive their disease is at presentation – deserve the opportunity to have the correct treatment and to be given the chance to live. Therefore, I would like to thank everyone who donates to this project because your support makes it possible for St Mary’s to accurately diagnose and treat children like Raphaella.  

Jan 28, 2020

Salvage Therapy Rescues Ruth

Ruth After Treatment
Ruth After Treatment

Ruth was 9 years old when she first came to St Mary’s Hospital Lacor in Gulu. She is from a village in Lira, the district that borders Gulu in northern Uganda.   Her father brought her to St Mary’s in June 2019 after she experienced a one-month history of progressive and painful abdominal swelling.  

When she was admitted to our hospital, Ruth was quite ill. Her nutritional status was very poor and she had severe wasting. Upon examination, she had a grossly distended abdomen and an ill-defined mass that was palpable and very large.  She underwent blood work, a chest x-ray and an ultrasound of her abdomen.  The ultrasound revealed that she had multiple tumors in her liver, a separate large mass within her abdominal cavity as well as fluid in the abdomen.  A biopsy of the large abdominal mass was performed which confirmed that she had Burkitt lymphoma.

Ruth required supportive care, including nutritional support, and was started on first-line (FL) chemotherapy for Burkitt lymphoma that consisted of cyclophosphamide, vincristine, methotrexate and treatment to prevent the spread of disease to her central nervous system.

Unfortunately, Ruth did not respond to FL treatment as we had hoped. Therefore, after two cycles of FL therapy, she was immediately changed to the second-line treatment which is intended for patients such as Ruth who do not respond well to FL therapy. The drugs used in this second-line regimen are different to FL. She responded very well to this salvage regimen. Although it is more intensive - meaning that patients can experience more prolonged or serious side effects than with FL therapy, Ruth tolerated second-line therapy well. She completed all planned treatment and achieved a complete response. Ruth was recently seen at the hospital and has no evidence of disease. And, she is recovering her strength.

Thanks to your generous donations to this project, poor children from rural villages have access to the necessary treatment for Burkitt lymphoma, including salvage therapy when needed, in order to provide them with the hope for long-lasting cure and the chance to fulfill their dreams. Thank you again for your support.    

Dec 2, 2019

An Unanticipated Success: The Family Home School

Children Enjoying Activities at School
Children Enjoying Activities at School

In early 2018, Joyce was appointed as the teacher for children with cancer who undergo treatment at St Mary’s Hospital Lacor in Gulu, Uganda. She opened the Rainbow Family Home School within the premises of the Family Home that is located on the hospital’s grounds. As INCTR previously reported, the main goal of the educational program for the children is to enable them to cope with life while undergoing cancer treatment.  The main elements of the curriculum include reading, writing, mathematics, social studies, health and basic English. Recreational and social activities are also major components of the program.

When Joyce began, it was not easy because the children spoke in many local languages and some, although of school-age, had never been in a formal classroom before. One of her earlier decisions was to teach the children in one common language – English. She found that children – of all ages – were eager to learn and many who had missed going to school were more than happy to have the opportunity to keep up with school while away from home.  This was also important to their parents who did not want their children to fall behind other children of the same age.    

Children with some types of cancer, such as Burkitt lymphoma, often present with disfiguring tumors in the facial region. While this cancer rapidly responds to treatment, it can take some time for abnormalities to completely resolve. At the Rainbow Family Home School, the children find that they fit in. Their shyness about their appearances quickly disappear because their fellow students and Joyce warmly welcome them.

The school provides a friendly environment for children to learn and to have emotional support they need - from Joyce and from other children suffering from cancer. Children often need to stay at the Family Home for prolonged periods of time during treatment. The reasons vary from patient to patient, but the most common reason is the long distance and/or the unreliability of transportation (including costs) from home to the hospital that inevitably lead to unnecessary disruptions in or abandonment of treatment when parents wish to return home in-between their child’s treatment cycles to care for their other children and to resume work to sustain their families.  

It should be noted that when the school was opened, St Mary’s management team and staff considered it an “experiment” and were sceptical about it being successful. Their opinions rapidly changed. The Institutional Director recently wrote to say; “The teacher is doing a great job. I see faces of happiness and without INCTR, I would not have envisaged how useful this venture would be”.

Thanks to everyone who has donated so generously to this project. Your donations mean that children with cancer treated at St Mary's have the opportunity to keep up with school and to have recreational and social activities that improve the quality of their lives while undergoing treatment.  


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