Due to South Africa’s depressingly low success rate for diagnosis and treatment of childhood cancer, CHOC (Childhood Cancer Foundation South Africa), in conjunction with paediatric oncologists, has developed an easy to remember six-point early warning system for parents, teachers, nurses, traditional health practitioners, GPs, paediatricians, anyone really.
I was lucky enough to attend a workshop run by CHOC and facilitated by Mama Brenda a member of the CHOC team and a nursing sister who works in the Paediatric Oncology Centre at Charlotte Maxeke Johannesburg Academic Hospital.
So what were the three most important things I learnt?
1. You know your child best, look for the signs
You spend the most time with your child, therefore you are best positioned to notice the small things – a lump, a persistent rash, a weird looking spot in the eye, one too many nose bleeds, a change in personality, unexplained bruises or a loss of weight or appetite.
CHOC has created the acronym St. SILUAN to help people remember the six key early warning signs that your child may have cancer.
Obviously kids can be weird, they get bruises, nose bleeds, they throw tantrums, they don’t always want to eat. But as parents, we know more or less what is the norm for our child.
The keywords to remember are:
Unexplained: No reasonable explanation for why your child is acting the way they are or have the problem they have. If multiple bruises pop up over night without any obvious explanation or your child’s eye has changed colour or has weird white spots where there were none before.
Persistent:If your child is having blood noses constantly, or not eating constantly, or losing weight constantly, or keeps loosing their balance then perhaps these things are no longer random, they have now become patterns and patterns require further investigation.
On a side note, children should not get backache or headaches, generally speaking, if your child is complaining of these persistently you should seek medical help.
2. Don’t take “no” for an answer, demand answers if your gut says something is wrong
Do not underestimate the power of a parent’s instinct, if you feel your child’s symptoms are being overlooked or not taken seriously, do not put your tail between your legs and let it go. If the doctor or nurse or traditional healer gives a diagnosis and treatment but the symptoms do not go away on completion of the treatment go back.
And make sure you go back to THE SAME clinic or doctor. If you keep going to a new person each time, you will only ever get the first base answer, a health practitioner will need to see a pattern to escalate their thinking and recommendations.
When a doctor examines your child, be assertive, ensure they physically assess your child from head to toe, do not let them prescribe some Panado based on your verbal account of your child’s symptoms.
3. Private health care is not always best
One of the biggest things Mama Brenda schooled my privileged ass on was that if you want answers and you feel you are not getting them or you have answers and your child is in need of the best medical care in the country, when it comes to childhood cancer, do not think private health care.
If your child has cancer, the best place for your child is at one of the government teaching hospitals associated with CHOC – these are the Red Cross Children’s Hospital, Groote Schuur and Tygerberg hospitals in the Western Cape, Steve Biko, George Mukhari, Unitas, Little Company of Mary, Charlotte Maxeke (Joburg Gen) and Chris Hani Baragwanath hospitals in Gauteng and Northern regions, Greys Hospital and Inkosi Albert Luthuli Central Hospital in KwaZulu-Natal, Universitas Hospital in the Free State and Frere Hospital and Dora Nginza Hospital in the Eastern Cape.
The reason for this is that these hospitals are the hospitals that have centres for excellence in paediatric oncology, these departments are staffed by some of the best and most experienced doctors and nurses when it comes to diagnosing, treating and caring for children with cancer. These departments are made up of multi-disciplinary professionals who approach treatment from a holistic point of view. And this holistic view includes the families of the children in their care. In these hospitals, you will find not only the best care but the support structures needed to survive the often long road ahead when your child is diagnosed with cancer.
Ultimately this is CHOCs purpose – to provide care and support for children with cancer, and their families as well as, to support specialist treatment centres.
To support CHOC’s cause click here.
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Leigh Tayler is a writer, a Leo, a feminist, a fan of The Walking Dead, a lover of all things unicorn and nearly succumbs to rage strokes on the daily. Oh, and she also happens to be a mother to one small feral child. She wears her heart on her sleeve and invariably tells it like it is, the good the bad and the ugly. She juggles her writing, her family, her sanity in-between a demanding career in advertising. She has no shame in sharing her harebrained and high-strung anecdotes on her experience of motherhood, no sugar coating, no gloss, just her blunt truth with a healthy side order of sarcasm. Find her on her blog, The Ugly Truth of Being a Mom.