When I Visited a Home of a Child Who Faced Cancer in Rural Uganda

The first thing I and the team at Kitagata Hospital saw was the bright and smiling face of a young seven-year-old girl.  She guided us into her home where her parents greeted us.

On the surface, she seemed like a happy seven-year-old, but the reality was that she had been battling leukemia for the last three years of her life. Only recently had she gone into remission. This was no small feat, and her family was greatly supported by Project SHiNE, a transport program for pediatric cancer patients run by Kitagata Hospital and supported by the Palliative Care Association of Uganda (PCAU).

Over the last three years, the child and her mother have traveled monthly to Mbarara Regional Referral Hospital, which is approximately 100 kilometers away from her home. This proved to be immensely taxing on the family, as the young girl’s parents ran a Kiosk and had to shut it down every time the young girl went for treatment. While at the hospital, the young girl is required to receive special investigations several times during her stay to make sure she is okay enough to continue treatment. This costs the family upward of Uganda Shillings 100,000 or ($28) for every investigation. This is a lot of money for the family. The SHiNE Project has been supporting these costs. Such costs contribute greatly to the terrible statistic of 30% of treatment abandonment for children with cancer in Uganda.

The effects of chemotherapy have required the young girl to have special dietary needs, which are beyond what the family can afford. Some of these needs include increased intake of protein through dairy and meat consumption. While the family can provide her with milk, they do not have any livestock and must purchase any eggs or meat that the young girl needs.

Now that the young girl is in remission, she is not required to travel to Mbarara Regional Referral Hospital monthly. However, she is still facing obstacles. She is required to attend a series of routine investigations several times per year. Her schooling has been resumed, but she is far behind her classmates. She missed classes while receiving treatment. The school is not equipped to accommodate the young girl’s extra needs, especially when it comes to her need for extra teaching to catch up and diet.

Her story and more like it serve as powerful examples of the impact the ShiNE Child Program can have on the lives of children receiving treatment for a cancer diagnosis. The program is supporting 27 children in this area of southwestern Uganda. This girl was able to complete her treatment due to the support she received. When you meet her, she is a happy and healthy young girl able to continue living her life to the fullest. ShiNE Child Program is a prime example of how palliative care not only provides relief but also has the power to save lives.

During his recent internship with PCAU, Ethan Harned worked on various projects including the Special Hearts to Nurture Every Child (SHiNE) Program. The program goal is to reduce the current cancer treatment abandonment among children from 30% to 5% in the next 5 years.

 As told by:
Ethan Harned, Undergraduate Student
University of Notre Dame USA
Student Hesburgh-Yusko Scholars Program

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