Improve Quality Childhood Cancer Care in Uganda

Gillian was five years old when she first came to St. Mary’s Hospital Lacor in Gulu, Uganda. Her father, who accompanied her, reported that she had a three-week history of progressive abdominal swelling associated with pain. He also stated that she had a reduced appetite and when she did eat, she felt full and could not complete her meals.  When we examined Gillian, she had a grossly distended abdomen and an obvious mass in the right lumbar region.  The mass was not tender and had a smooth surface.   She did not have pallor, jaundice, or swelling in her lower limbs.  Despite her decreased appetite, her nutritional status was good.  

Gillian underwent a series of examinations including routine blood work, a chest x-ray, and a scan of her abdomen. The abdominal scan revealed that she had a large mass in her right kidney and multiple masses in her liver. A tru-cut needle biopsy of the mass was performed. The results of the biopsy confirmed that Gillian had Wilms tumor, a type of kidney cancer that occurs in young children. Wilms tumor is the second most common childhood cancer that we see at St. Mary's. 

When we examined the tumor cells further, it was determined she had an unfavorable type of Wilms tumor. Because Gillian also had disease that had spread to her liver, her prognosis was considered poor.  After counselling about her diagnosis and prognosis, her parents gave their consent to start her on our treatment regimen for Wilms tumor. She began with several cycles of chemotherapy and then underwent the surgical removal of her right kidney. Upon recovery from her surgery, she was re-started on chemotherapy. After her third cycle of post-operative therapy, she was discharged to her home in a rural village in the Amuru district which is a two hour journey – under the best of circumstances – from St. Mary’s Hospital to recover from this cycle of chemotherapy.

Unfortunately, while she was home, the Ugandan government instituted a ban on the use of public transportation because of the global pandemic caused by the novel coronavirus, Covid-19.  This meant that Gillian did not return to resume her much needed chemotherapy.  After many weeks had passed, a local organization found Gillian at home in her village and brought her back to our hospital.  

Once she was back at St. Mary's, we undertook studies to ensure that her cancer had not returned.  Thankfully, she had no evidence of disease. Gillian went on to complete all planned chemotherapy. Two months after treatment completion, Gillian and her father returned to the hospital and we are pleased to report that she remains free of disease and is doing very well.  

We would like to thank the people who support this project. Without your generous donations, children like Gillian would not have access to free treatment and therefore, would have no chance of cure.  Thank you again for your support!

The first case of the novel coronavirus, COVID-19 was reported in Uganda in late March. Around this same time, the Ugandan government placed a ban on the use of public transportation, in addition to implementing other types of restrictions, to prevent the spread of the virus. These have markedly reduced access to care for children with cancer.  

While the use of government ambulances was permitted and private vehicles could be hired for transportation, the costs were high ($20 to $50). Boda-bodas - or motorcycles - could also be hired for travel within the wider Gulu district, and although the costs were less ($15 to $30), they were still too high.  This is because most families live on less than three dollars a day in the best of times and parents simply could not afford to bring their children to St Mary’s at these prices.  

With this in mind, we developed an emergency response plan that was put into place in April to cover the transportation costs for parents of children with cancer. Children who had been discharged to home in-between treatment cycles were brought back to St Mary’s and when they completed their next course of treatment, they were taken home. We also brought children who had completed their planned treatment back to the hospital for routine follow-up appointments. Children who had been waiting for several weeks at the hospital to be discharged after all planned treatment was completed were taken home. Financial support mechanisms for children living outside of the Gulu District were also implemented.  Since this plan was put into place in April, we have been able to support 45 children with transportation to and from the hospital.  

St Mary’s typically sees 10 to 15 newly diagnosed children with cancer each month. But, from late March through the end of May, only three such patients were admitted to the hospital. We hope to bring more children with suspected cancer to our hospital for care. Even with our best efforts to improve transportation support mechanisms, we know that many other children under our care have abandoned treatment altogether at this time.

Your donations have made it possible for us to assist families with transportation costs. With your continued support, particularly during this period, you can help us to ensure that as many children with cancer as possible receive the treatment they need. Thank you very much for your donations!