The challenges parents face when looking after their children with cancer
Other than seeing their children in pain and tears, parents caring for children who have cancer go through financial and psychological problems. They also adjust their lives to spend more time in hospitals.
Elizabeth Monama, whose son Fortune (20), was diagnosed with leukaemia when he was 12 years old says the whole experience overhauled their lives. They had to draw a balance between their work and social lives in order to spend more time with him throughout his treatment.
“Our lives were disrupted because we used to spend most of our time at the hospital taking care of my son and we barely had time to rest. We had to put a balance between our jobs and being with him and it was very difficult because his condition required undivided attention and care,” Monama says.
Leukaemia is a cancer of a person’s blood-forming tissues, including bone marrow. According to World Health Organisation (WHO), leukaemia constitutes about a third of all cancer in childhood. “The other most common malignancies are lymphomas and tumours of central nervous system. There are several tumour types that occur almost exclusively in children including neuroblastoma, nephroblastoma, medulloblastoma and retinoblastoma.”
Monama says that only a few people knew about and understood the condition her son had, so made it difficult to know how they should support him.
“Even though he received his chemotherapy from a government hospital, his treatment was very expensive. As only a few people knew and understood his condition, it was up to us as his family and close friends who were with him all the way to offer him support,” she says. “He also developed a fighting mindset from the support he received from us and other cancer survivors.”
The best advice comes from experience
Monama says the best way to help children beat cancer is to be there for them throughout their treatment, offering them support, no matter what difficulties parents and families go through.
“I would advise other caregivers to be strong for their children and give them all the support they can because fighting cancer requires too much energy and a strong fighting spirit and they must also pray to God all the times for guidance and strength,” she says.
“I am just happy that my son has been cancer-free for the past five years and it is what keeps me going every day,” Monama adds.
Evodia Baloyi (37), from Groblersdal, says they had financial and psychological problems when her now 15-year-old son was diagnosed with leukaemia.
“To be honest we went through a very difficult time as a family as we all had to adjust our lives in order to be able to give full support to my son. Though he is now cancer-free and he will be celebrating his journey this month, I still shed a tear every time I think about the whole ordeal we went through,” says Baloyi.
Baloyi says that having to explain her son’s cancer condition also made life more difficult for her because she didn’t have enough information about it and people didn’t understand it. “It becomes hard when you have to explain to people. You have to take constant days off at work because you have to be at the hospital almost every day and the costs are also too much, even though you’re using a medical aid,” says Baloyi.
She adds that parents also need support and counselling because the experience can be overwhelming.
“No one can ever be ready to go through such ordeal. Cancer is not like any other diseases so a cancer patient also requires a lot of support. Imagine not knowing how to explain to your child about the condition he/she is suffering from,” says Baloyi.
Most childhood cancer initially presents non-specific signs and symptoms, which may lead to late detection.
Support in many forms
Osteosarcoma cancer survivor, Nomsa Tshingowe (28) of Mulima village, outside Louis Trichardt, says she started a food drive in 2018 through her organisation Cancer 0 Thirty 5, to offer support to parents who are looking after their children who have various cancers, after she realised the challenges they experience.
The organisation collects food parcels from donors and donates it to needy families of childhood cancer survivors. “Through my journey with cancer, I realised that once one family member is diagnosed with cancer, the whole family system gets disrupted and they need all kinds of support they can get. You find that some parents are unemployed, and it frustrates them not knowing where to get the next meal,” says Tshingowe.
Tshingowe says: “So far we have assisted over 54 families with food parcels [since we launched in] 2018. Our plan is to make sure that we don’t only provide food parcels to the families affected with cancer once in a year but to do it quarterly or on a monthly basis. We also hope to host more cancer awareness campaigns in parts of rural Limpopo as most people still lack information on how to support people who have cancer, especially young children.” – Health-e News