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
Elizabeth and Her Mother  After Treatment
Elizabeth and Her Mother After Treatment

Elizabeth is an only child. Her father abandoned her and her mother when she was four months old.  Her 18-year-old mother receives no financial support from her husband.  Mother and daughter live with Elizabeth’s maternal grandfather. 

Elizabeth was referred to our hospital, St. Mary’s Hospital Lacor in Gulu, Uganda by the Lira Regional Referral Hospital (LRRH) which is in a nearby district. Her mother reported that in January 2021, Elizabeth had a poor appetite and suffered from weight loss that began when she was one and a half years old. At the age of three, Elizabeth began to develop swelling in the left abdominal/lumbar region. She reported that Elizabeth also had pain, fever, night sweats, and a total loss of appetite. Her mother took her to a nearby health center that immediately referred her to the LRRH. She spent three weeks at the LRRH where she received treatment for malaria, but because there was no reduction in the abdominal swelling, she was referred to our hospital for suspected cancer. She was admitted to our hospital in early April 2021 - four months from the onset of symptoms of cancer.

After a complete evaluation, Elizabeth was diagnosed with Wilms Tumor – a type of childhood cancer of the kidneys. She started pre-operative chemotherapy in mid-April 2021 and when this initial treatment was completed, she underwent a nephrectomy (a total removal of her left kidney) in July 2021. After recovering from surgery, she was given post-operative chemotherapy and completed all treatment in late October 2021. She achieved a complete remission and was discharged home with a schedule of appointment dates for routine follow-up visits.    

During treatment, Elizabeth and her mother were never visited by any relatives.  They did not receive any type of support from the family.  After discharge from St. Mary’s, Elizabeth’s mother did not bring her back for a routine follow-up visit in January 2022, but when they both returned a month later, Elizabeth was diagnosed with severe acute malnutrition and her mother was equally weak and wasted. They were both started on nutritional rehabilitation at the hospital. Both are much better now.  Our team decided that it would be in their best interests to remain at the hospital’s Family Home until Elizabeth completes at least six months of follow up check-ups to ensure that they have the necessary psychosocial support, including food.  Elizabeth was last evaluated in May 2022 and found to be in complete remission.

Elizabeth and her mother live in very poor circumstances and faced many challenges before, during, and after the completion of treatment – largely due to the lack of family support, even while at home after her initial discharge post treatment completion.

Thanks to your generous donations, children like Elizabeth can receive treatment for free and other support – food, accommodation, and transportation – which were all beyond the means that her mother could provide. While it is good news that Elizabeth remains in remission, we are concerned about the struggles that they will face once they leave our hospital. Your donations make it possible for us to care for children like Elizabeth and continue to care for them when they have been successfully treated. Thank you again for your support!

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Queen and her Father Wave Good-bye to the Staff
Queen and her Father Wave Good-bye to the Staff

Three-year old Queen and her family, originally from Sudan, are currently living in a refugee camp in Uganda following their displacement by the civil war in southern Sudan.  In late June 2021, Queen experienced abdominal distention and pain that were managed by a health center.  She was discharged after being given medication, but her condition continued to worsen.  She returned to the health center with progressive abdominal distention and severe pain.  She stayed at the health center for two more weeks, but after she had no improvement, she was referred to our hospital, St. Mary’s Hospital Lacor in northern Uganda for further investigations and management. 

When Queen arrived at St. Mary’s on July 23, 2021, she was immediately admitted to our children’s cancer ward. Upon examination, her abdomen was grossly distended and tender to the touch. She was in such severe pain that she cried inconsolably. She also had respiratory distress. Blood work revealed that she was severely anemic. She required a blood transfusion and was given medications to manage her pain. We performed an abdominal ultrasound which showed a large solid mass in her left kidney. She underwent a biopsy of the renal mass that was positive for Wilms tumor. She was started on chemotherapy for this cancer at the beginning of August. Because her left kidney was totally non-functional, it was removed in October. She completed all therapy at the end of January 2022.

Her father remained with Queen at St. Mary’s throughout her entire course of treatment. We closely monitored Queen for side effects of chemotherapy, including infections. Unfortunately, Queen experienced many such effects and she had malaria several times – all of which resulted in treatment delays. She also contracted Covid-19 while in the hospital and was transferred to our Covid Treatment Unit for two weeks which further delayed her treatment and prolonged her hospital stay. But her father was committed to ensuring that Queen complete all planned therapy despite the many setbacks.

Prior to her discharge, Queen underwent additional scans which showed that she was in complete remission. Her father was so happy. He wishes to thank the dedicated team at St. Mary’s and all the donors who contribute to this project for their support. Thanks again for your generous donations that enable children like Queen to receive the highest quality treatment for cancer.

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Immaculate and Her Mother
Immaculate and Her Mother

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.  

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Children Learning the Parts of the Body in English
Children Learning the Parts of the Body in English

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!      

     

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Abraham with His Mother
Abraham with His Mother

Abraham was admitted to our hospital, St. Mary’s Hospital Lacor in Gulu, Uganda in December of 2020. He came to our attention during an outreach session that our hospital held in his local community to raise awareness about childhood cancer. Abraham and his mother were immediately brought to St. Mary’s because he was obviously very ill.  

At the time of admission, he was only one. His mother reported that Abraham had been ill since he was four months old when she noticed a swelling in his abdomen. The swelling progressed rapidly. His mother further explained that he soon developed multiple swellings on his scalp.  About two weeks prior to admission, he had developed protrusion of both of his eyes with loss of vision and cried excessively. Abraham's parents were unable to seek help when he first developed abdominal swelling because their respective families would or could not help them support the costs of seeking and obtaining medical care. 

Because of the clinical findings upon examination, we immediately did a work-up and the tests revealed that he had a large mass above the left kidney.  A biopsy was performed which confirmed our suspected diagnosis – neuroblastoma- a type of childhood cancer. As Abraham’s doctor, it was the first case of this cancer that I had diagnosed at our hospital in a very long time.  Because of our own limited resources for managing children with neuroblastoma, we usually refer these patients to the Uganda Cancer Institute in Kampala.

When we counselled the mother about the need to go to Kampala for her son's treatment, she broke down crying because she had no existing means of support. She said that traveling and staying in Kampala was not an option for her.  She asked us to do anything that we could for her son.  We bit the bullet and started Abraham on an intensive chemotherapy regimen.  

We were heartened when he showed a good response to the first cycle of therapy. He has recently completed his third treatment cycle. We faced many challenges in managing the side effects of chemotherapy he has experienced, particularly anemia. Abraham has a rare blood type. The supply for his blood type is normally difficult to obtain, but the situation was made worse because of a general blood supply shortage in our region. But, despite the difficulties, we have been able to manage the treatment-related complications Abraham has experienced so far.

We hope for the best for Abraham and his mother. Family support is an essential part of treatment and we have been able to provide Abraham’s mother with the necessary mental, emotional, and spiritual support during his treatment.  As his doctor, I remain worried about their future because Abraham's overall prognosis is very poor.

Abraham’s story reminds me how necessary it is to inform the public and health care professionals at the community level about the signs and symptoms of childhood cancer so that referrals of children with suspected cancer can be made promptly and prevent children presenting with such advanced cancer as Abraham. It also taught me that families and children with cancer need comprehensive psychosocial support. The support that we have given to Abraham’s mother has enabled her to remain at St. Mary’s so that Abraham can complete planned treatment. It also made me wonder if Abraham’s prognosis would have been better if his parents had the necessary financial support to seek and receive medical help when he first became ill.

We thank everyone who donates to this project because it enables us to deliver the best possible care to unfortunate children who present with very advanced cancer like Abraham. Although Abraham’s long-term prognosis is poor, we have been able to offer his mother the support that she needs and give her son a better quality of life. Thank you again for your generous donations!        

 

 

 

 

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Project Leader:
Melissa Adde
Brussels, Belgium
$23,898 raised of $75,000 goal
 
196 donations
$51,102 to go
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