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
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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Gillian Post Chemotherapy
Gillian Post Chemotherapy

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!

  

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Family Assessment at St Mary's During Lockdown
Family Assessment at St Mary's During Lockdown

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!    

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Raphaella and her Mother
Raphaella and her Mother

Raphaella came to our hospital, St Mary’s Hospital Lacor in Gulu, in November of 2018 when her father decided to bring her to us because she was not improving with treatment given to her by their local health center. The doctors at the health center thought that Raphaella had a hyperactive malaria syndrome and treated her with anti-malarial drugs for many months.

Her father explained that Raphaella had a 7 month history of progressive abdominal distention that was associated with pain, intermittent fevers, and weight loss. Two weeks prior to admission, she developed chest pain associated with a cough. Further complicating her problems was that Raphaella had known epilepsy which was not properly controlled – her parents could not afford the costs of transportation to obtain the necessary drugs to treat this condition.

Upon admission, Raphaella was very sick. She had a grossly distended abdomen and was severely malnourished. We immediately began tests and found that she had an enlarged left kidney and that disease had spread to her spleen, liver, and lungs. A biopsy was performed which confirmed our suspected diagnosis of Wilms tumor – a type of childhood cancer that arises in the kidney. In our setting, Wilms is treated with pre-operative chemotherapy before we surgically remove the affected kidney (nephrectomy). A nephrectomy, which is a necessary part of treatment for Wilms tumor, is followed by post-operative chemotherapy for a period of time. We were heartened that after 8 weeks of pre-operative chemotherapy, the lesions in her liver, spleen and lungs had completely resolved. She, then, underwent a successful removal of her left kidney.  Unfortunately, Raphaella developed several post-operative complications and required two more surgeries, including a colostomy.  This meant that we had to delay her post-operative chemotherapy for nearly 8 weeks to allow her to recover from these extra surgeries.

Once Raphaella started post-op chemotherapy, she suffered all of the challenges associated with the known side effects of the drugs used. At one point, she developed such a severe infection due to her low levels of infection fighting white blood cells that she nearly lost her life. But, Raphaella was such a fighter and she survived. She stayed at the hospital’s Family Home during treatment to ensure that we could deliver chemotherapy on time and monitor her closely so that we could intervene promptly when treatment-related complications arose. Raphaella completed all chemotherapy in October 2019. We are pleased to report that she is free of cancer and that we were able to close her colostomy. With appropriate anti-seizure medications, her epilepsy is now well-controlled. She returns to St Mary’s for regular follow-up visits.

Raphaella’s story reminds me how necessary it is to improve and intensify public and health workers’ awareness about the signs and symptoms of childhood cancer at the community level so that referrals of children with suspected cancers can be made as quickly as possible.

It also taught me that children with cancer - no matter how extensive their disease is at presentation – deserve the opportunity to have the correct treatment and to be given the chance to live. Therefore, I would like to thank everyone who donates to this project because your support makes it possible for St Mary’s to accurately diagnose and treat children like Raphaella.  

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Project Leader:
Melissa Adde
Brussels, Belgium
$20,351 raised of $75,000 goal
 
162 donations
$54,649 to go
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