Improve Quality Childhood Cancer Care in Uganda

by The International Network for Cancer Treatment and Research (INCTR)
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda
Improve Quality Childhood Cancer Care in Uganda

Project Report | Feb 19, 2023
Abandonment of Free Treatment for Food Supplements

By Francis Okongo | Palliative Care Specialist, St Mary's Hospital

Timothy With His Family and Friends
Timothy With His Family and Friends

Timothy was diagnosed with advanced rhabdomyosarcoma of the scrotum, a type of childhood soft tissue sarcoma in 2021 when he was 12 years old. He became traumatized when he learned of the poor prognosis of his cancer. The family learned about the scrotal swelling after Timothy’s friend detected an unusual swelling in his scrotum. Because this strange swelling was similar to what his friend had, the friend asked Timothy to report this to his parents so that they could take him to herbalists in their area who provided treatment that had "cured" his friend.  

After suffering from this scrotal swelling for so long, Timothy was finally taken to a nearby hospital where he was operated on and diagnosed with rhabdomyosarcoma. This hospital referred him to our hospital, St Mary’s Hospital Lacor in Gulu for free treatment. He started on a full course of chemotherapy, but he developed progressive disease that spread to his lungs. We referred Timothy to the Uganda Cancer Institute in Kampala for more advanced cancer care and investigations. It was learned that Timothy’s cancer had spread to his brain. There was no hope for recovery and he was sent back to St Mary’s to receive palliative chemotherapy.

We provided intensive psychological and social support for Timothy and his family, but they were so frustrated and depressed to learn that Timothy would not live for long. He received a single dose of palliative chemotherapy to prolong his life and was discharged home. He was scheduled to return for a second cycle of chemotherapy, but he refused to return to St Mary's and said “the chemotherapy will kill me before the cancer itself, so I am not going back to any hospital”. Our hospital sent a team to visit Timothy’s home – 200 kilometers away from Gulu – to thoroughly explain his disease status to him and his family. During our visit, we learned that the family was giving him very expensive food supplements as an alternative to chemotherapy. These supplements were costing over 270 US dollars which was beyond the family’s income. Timothy is presently alive, and we continue to provide Timothy and his family with psychosocial support via regular telephone calls.

Timothy’s family members and his community are so grateful to St Mary’s for all the efforts tthat were made to provide him free treatment with initial chemotherapy and then palliative care. They have pledged to become ambassadors to inform their community about childhood cancer and its curability and to inform parents and guardians to regularly check their children for any unusual swellings so that if a cancer is suspected, it can be diagnosed and treated early and result in cure. This will also ensure that families are spared using their limited financial resources on treatments that will not work. We wish to thank everyone who supports this project because it means that children like Timothy can receive free treatment and palliative care and much needed psychosocial support.

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Organization Information

The International Network for Cancer Treatment and Research (INCTR)

Location: Brussels - Belgium
Website:
The International Network for Cancer Treatment and Research (INCTR)
Melissa Adde
Project Leader:
Melissa Adde
Brussels , Belgium

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