Improve Quality Childhood Cancer Care in Uganda

When Immaculate was three months old, she developed a swelling in her right cheek.  Her parents sought care at a local hospital where she was admitted and treated for two weeks without improvement.  She was then referred to another hospital and was hospitalized for a further three weeks.  The doctors at the second hospital suspected that she had cancer and referred Immaculate and her parents to St. Mary’s Hospital, Lacor in Gulu - nearly 380 kilometers from her home. She was admitted to St. Mary's in November 2020. She was accompanied only by her mother.  Her father had provided financial support for them up until this time.

Upon admission, Immaculate was a healthy five-month-old baby who was being breast-fed by her mother - apart from a large solid mass in her right cheek that was painful to the touch.  She underwent routine tests – which were all negative except the ultrasound examination of her cheek that revealed the  cheek mass was infiltrating her right salivary gland.  The biopsy confirmed that she had rhabdomyosarcoma, a type of cancer that can involve tissues such as this in young children. When her mother telephoned the father to inform him that their daughter had cancer, she said that he never spoke a word. After this call, she tried to contact him again, but he had cut off all his telephone services. She tried to telephone Immaculate’s paternal grandfather who stated that his son was not at home whenever she called.   

Mother and daughter were alone and without any financial or emotional support from the father. At St. Mary’s, they were given free accommodation and food at the hospital's Family Home and provided  with much needed psychosocial support. Immaculate began treatment for her cancer in December 2020. We anticipate that she will complete all treatment in early January 2022. Her treatment has been delayed at times due to side effects of chemotherapy and the need to excise the cheek mass. She is presently in complete remission and has a residual cyst. Upon treatment completion, we will perform cosmetic surgery to remove excess tissue that is still visible (including in the photograph of her with her mother). 

Immaculate and her mother have not left the hospital - even during breaks between treatment cycles.  Her mother wants to ensure that her daughter completes all planned treatment. As a team, we have have watched Immaculate grow and meet normal childhood developmental milestones. She is now able to eat simple table foods, use a potty chair, and able to stand and walk on her own. She can speak a few words and she can interact and play very well with other children. It is hard for us to believe that she will be 18 months old very soon.

After treatment and cosmetic surgery, Immaculate will return to live with her mother’s family which is very far away from St. Mary’s (near the Ugandan border with Kenya). Her mother hopes to start a small business to financially support herself and her daughter. Our team has plans in place to ensure that Immaculate is followed at regular intervals at the hospital and at home to ensure that she remains cancer free.  

Immaculate’s mother wishes to thank everyone who has donated to this project because it has meant that her daughter has received free treatment and they have received free accommodation and other services throughout their prolonged stay at St. Mary's.  Thank you for your generous donations that provide the necessary support for children like Immaculate to give them the best chance for cure.  

In 2018, Joyce, a teacher with training in child psychology, opened the Rainbow Family Home School for children with cancer at St. Mary’s Hospital Lacor.  When she began working with the children, she observed that they were very sad because they felt rejected, unloved, and not valued. Their self-esteem was poor. She developed an educational curriculum that provided the children with lessons in reading, writing, mathematics, social studies, and basic English as well as lessons focused on health and hygiene. She also addressed the children's lack of self-esteem by integrating social and recreational activities to promote life-skill building so that the children could become more self-confident and feel comfortable interacting with each other. Although the hospital administrative and medical staff were initially reluctant to have the school, they soon realized what a difference it made to the children’s quality of life.    

Schools in Uganda were closed because of the global pandemic. St. Mary’s had to make necessary changes and implement procedures due to Covid-19. It was uncertain how the changes would impact the Rainbow Family Home School and the children. Fortunately, the hospital school was allowed to remain open, but it had to move to a nearby facility outside of St. Mary’s main campus to ensure that the hospital complied with government policies related to the need to reduce patient and visitor flow. It took the children some time to adjust to having their lessons at the new facility because they were used to having a classroom decorated with pictures and alphabets and having cupboards that stored their educational materials.  The children had to learn to observe standard operating procedures (SOPs) to minimize their risk of developing Covid-19.  The SOPs included the enforcement of strict hand washing, social distancing, avoidance of touching their noses, eyes, and mouths, and the use of masks for older children. They were a bit anxious at first, but with a thorough explanation about why the changes and SOPs were necessary, they settled in – thanks to Joyce. Children who returned for short stays or who required long stays at the hospital to avoid treatment delays were happy that the family home school remained open to enable them to continue with their studies since their schools at home were closed. This is a contrast to the days before the Rainbow Family Home School opened when the children received no education during lengthy hospital stays and missed going to school. 

Joyce has made an extraordinary contribution to improving the quality of the lives of children undergoing cancer treatment at St. Mary’s Hospital and has helped them to adapt to the challenges imposed by the global pandemic.  Your generous donations have made it possible to support her efforts and to provide the children with the educational materials and social and recreational activities needed during treatment that are so important to their overall sense of well-being.  Thank you again for supporting this project!