Lindiwe Sibiya and son Luthando Sibiya Picture:Supplied
Lindiwe Sibiya and son Luthando Sibiya Picture:Supplied

World Childhood Cancer Awareness month: A mother shares her story of despair and then hope

By Viwe Ndongeni-Ntlebi Time of article published Sep 28, 2021

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Luthando was just five-years-old when his mother, Lindiwe Sibiya, found him coughing up blood in his sleep.

Following blood tests, the Sibiya’s found out that Luthando was suffering from a rare blood disorder, aplastic anaemia.

According to the Leukaemia Foundation, aplastic anaemia occurs when one’s bone marrow fails to produce enough blood cells. If left untreated, this blood disorder can be fatal, and in some instances, a blood stem cell transplant is the only viable treatment option for patients with severe aplastic anaemia.

Sibiya says Luthando seemed healthy when he went to bed that night. When the blood wouldn’t stop, she called an ambulance, and he got admitted to hospital. Since then, their lives have changed forever.

September is World Childhood Cancer Awareness month, and a light is shone on spreading awareness and early detection.

During this month, DKMS Africa (formerly known as The Sunflower Fund) is focusing on the children who have survived serious illnesses to commemorate them during this month.

Finding out that your child is sick can be hard to process.

“I thought my child had been bewitched,” says Luthando’s mother, as she replays the night that changed their lives forever.

Luthando was one of the lucky 25% of blood disorder sufferers who found a donor match – from a relative.

In 2020, the boisterous preschooler received a blood stem cell transplant from his older sister, Lusanda, who was just 9-years-old. Lusanda was a 100 percent genetic match to Luthando.

“My lively child had an arduous journey that affected our entire family. We are forever changed by his illness, and, at the same time, we are immensely grateful that Lusanda was able to gift her brother a second chance at life at such a young age.”

“My little girl was so brave and did everything she could to help her brother. But others are not as lucky and need the help of strangers. I am begging fellow South Africans to find the courage like my daughter did. Please register to become a blood stem cell donor. I can promise you, the procedure was simple and pain-free to Lusanda,” says the beaming mom.

Alana James, Country Executive Director for DKMS Africa, says: “Luthando’s story illuminates the journey of children and the heavy toll that illnesses like blood disorders place on the entire family unit. Luthando was extremely fortunate that his sister was a match, and we are extremely proud of her bravery. We are also immensely proud of the role that organisations such as CHOC play in supporting patients.”

While Luthando's story may have a happy ending, with some kids, it can be fatal.

Researchers find that there are many advances in paediatric oncology, yet cancer remains a leading cause of mortality in children and adolescents, particularly in high-income countries.

However, according to the Department of Health: “Child cancer is highly curable with survival rates of around 80% in developed countries yet in low and middle-income countries tens of thousands of children die needlessly every year from the disease - most dying without any effective pain relief.

“Poor diagnosis coupled with too few specially trained doctors and nurses and the mistaken belief that child cancer is too difficult to cure combine to create very low survival rates.

“In fact, at least 50% of child cancers can be cured even in resource-poor environments with relatively simple and inexpensive drugs and procedures which have been known to doctors for decades.”

Adding that around 80% of all child cancer cases globally occur in low, and middle-income countries, yet fewer than a third of children are diagnosed in these countries, and of those who are treated, less than 20% survive.

The World Health Organization (WHO) explains that cancer occurs in people of all ages and can affect any part of the body. “It begins with genetic change in single cells that then grow into a mass (or tumour), invades other parts of the body and causes harm and death if left untreated.

Unlike cancer in adults, the vast majority of childhood cancers do not have a known cause. Many studies have sought to identify the causes of childhood cancer, but very few cancers in children are caused by environmental exposure or lifestyle factors.

Cancer prevention efforts in children should focus on behaviours that will prevent the child from developing preventable cancer as an adult.

“Some chronic infections, such as HIV, Epstein-Barr virus and malaria, are risk factors for childhood cancer. They are particularly relevant in low- and middle-income countries.

“Other infections can increase a child’s risk of developing cancer as an adult, so it is important to be vaccinated (against hepatitis B to help prevent liver cancer and against human papillomavirus to help prevent cervical cancer) and to pursue other methods such as early detection and treatment of chronic infections that can lead to cancer.

“Current data suggests that approximately 10% of all children with cancer have a predisposition because of genetic factors,” notes the organisation.

“Because it is generally not possible to prevent cancer in children, the most effective strategy to reduce the burden of cancer in children and improve outcomes is to focus on a prompt, correct diagnosis followed by effective, evidence-based therapy with tailored supportive care,” concludes the WHO.

The Childhood Cancer Foundation South Africa (CHOC) agrees with WHO and says: “It is imperative that children are diagnosed early for effective treatment of early-stage disease, which will translate into favourable outcomes and improved overall survival.

Many factors are responsible for delays in childhood cancer, including the child’s age, family’s socio-economic status, parental educational level, distance of residence from the hospital, cancer type, site, and stage.”

The organisation says we should endeavour to ensure children with cancer do not face further delays in the diagnosis and treatment of cancer during the global Sars-CoV-2 pandemic.

“The burden of the Sars-CoV-2 is further testing our fragile African health care systems. Many caregivers are unemployed due to national lockdowns, there are inadequate transport systems, and caregivers are afraid to venture out of the safety of their homes to seek healthcare as the ever-present danger of contracting Covid-19 lurks. Sadly, we may experience even further delays in the diagnosis of childhood cancer.”

Health professions are encouraging communities to be a voice of hope this September and beyond this month. To collaborate with healthcare workers, non-profit organisations, and the Department of Health to spread awareness and save the lives of many children.

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