September is Childhood Cancer Awareness Month Photo The Alfano Group
South Africa – September marks Childhood Cancer Awareness Month around the world. Around 80% of all child cancer cases globally occur in low- and middle-income countries. Only one third of children are diagnosed in these countries. Having a child diagnosed with cancer can have a devastating impact on a family.
The theme for South Africa this month is to ‘make the world gold’ as gold is the colour for childhood cancer awareness. It is important to spread awareness about childhood cancer and how to provide support to a child. This comes after a new study found there would be a higher survival rate if children had access to resources, said Shuhaida Adam, of Islamic Careline.
According to Adam, research indicates childhood cancer should not exist. It is an anomaly. As such, it takes some time before medical professionals are willing to diagnose a child with cancer. There may be a sense of disbelief or refusal before parents come to terms with the diagnoses.
“The parents or the caregivers that they [children] are living with, they sort of believe the symptoms to be belonging to another illness or even the healthcare providers may first rule out other illnesses before they look at cancer. Sometimes when the diagnosis comes the child’s condition is now quite advanced.”
Childhood cancer is a very intense experience for all involved
Childhood cancer impacts everyone the child knows. Their educators, their friends and even their friends’ parents have to get involved in the journey, said Adam. It is an intense experience but the child and the family need as much support as they can.
“It’s a very intense experience and as a family you will be going through this journey with the child. Whether it is your own child or whether it’s your brother or sister, it’s a journey that you’re going to be a part of … [everyone] will be a part of this journey. Somehow you do have a little role to play in how we as a community can make this experience as comforting as possible for the child who’s going through it and for the family. Everybody has a role to play.”
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The impact it has on parents
Receiving a cancer diagnosis may elicit difficult emotions such as denial, anger, anxiety and/or depression. Parents can experience a range of emotions including numbness and even denial, said Adam.
“Parents [may experience] absolute numbness, absolute devastation. There’s absolute shock. Oftentimes there’s a tendency towards just believing the diagnosis. You’ll find that what parents do is they perhaps want to get another opinion. They want further testing done … When everything points to the presence of cancer then there can be a whole host of other emotions that come through. Especially fear, anger, pain on the parents’ side. Some parents may feel guilty. They may believe there’s something genetic they have passed on to their child.”
It is important for parents to remember childhood cancer comes out of nowhere. It is not genetically passed down, said Adam. No other person can have this cancer and the child can still get it. One should not blame themselves.
The treatments for childhood cancer and the impact of it
Depending on how far the cancer is, parents can be just thrown into the system, said Adam. This can be especially difficult on parents and the child. If the child is from a rural area, they may find themselves far from home which can make things worse for them and their parents.
“If it’s a bit advanced then families might find they are immediately thrown into the whole system. They are thrown into the treatment. The child will have to maybe go immediately to stay over in a hospital … Every parent would want to be there for the duration of the treatment. However, with the reality of life and responsibilities, some parents will not be able to be there for the treatment and to be there for their child.”
There are different treatments for childhood cancer, but it all depends on how far along the cancer is. There is surgery, radiation therapy and chemotherapy. Unlike chemotherapy, radiation therapy can often cause more serious side effects in children. It is a tough time for a child especially if they don’t have a parent around. They will be coming to terms with their health and treatments, said Adam.
“Children who are diagnosed will experience perhaps extreme behaviour changes. They may act out. They experience stress, trauma and after the treatments you might find that they are experiencing post-traumatic stress disorder. The impact of what they have gone through stays with them even after the treatment. When they are back home you also find this child may experience extreme fear and anger towards whoever they can take it out on.”
A child might also have a crisis of faith, explained Adam. They may be angry at their Creator and also at those who try to comfort them.
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The impact it can have on siblings
It can also be an incredibly difficult time for siblings. Especially if they are older and understand what cancer is like, said Adam. They may also go through the same emotions as their parents because they understand and know the reality of the situation.
“Your older children, who have a greater understanding of what this illness is about what cancer is, they may also experience a lot more despondency and depression around the diagnosis … Other children who are at home, who are not diagnosed, can have a tremendous impact on them as well.”
They can also feel some type of jealousy towards the child that is sick. They feel this jealousy because the child that is sick is getting special treatment from everyone in the family. It is important to remember this jealousy does not come from a place of malice, explained Adam. The jealousy is from them feeling neglected.
“They are feeling left out. They are feeling as if they are not as important in the family anymore. That jealousy can also lead to anger towards the diagnosed sibling.”
It is important to watch the siblings’ emotions and make sure to not neglect them. Ensure they know they are loved just as much and give them time when they need it. It is a difficult thing to do but a little goes a long way.
The effects it can have on the parents’ relationship
When parents are involved in the care of a child with cancer, they experience both positive and negative changes in their relationships. Parents might take on different roles with one fully focused on taking care of the child while the other continues with life and work. This can leave a parent feeling left out and may cause the two to drift apart, said Adam.
“Oftentimes we find that where the parents are living together there may be a strain on the marriage. The parents may find that they’re arguing with each other quite a bit or that one parent copes and is able to deal with the diagnosis more strongly than the other. They may resent their partner for not being as supportive as they would have liked.”
Dealing with all the challenges that comes with childhood cancer
The best way to handle these challenges is by having a strong support group. A strong support group can help in many different ways, explained Adam. Look towards your friends and family members for support.
“Look to your support and that’s practical support. Family members who can assist you with looking after your other children. Who can help with the cooking, cleaning, and meals. That makes a world of a difference. Oftentimes we don’t want to burden our other family members but just realise also that the impact of the treatment is very intense you will need that extra help.”
Having the extra support will help to decrease the stress levels in the house. It will also help to lighten the load of work. Couples can also take time for themselves and be with each other, so the marriage does not become strained.
One can also seek help in the form of therapy. Counselling can help families deal with their emotions. Group therapy can work wonders to make sure relationships don’t break down and everyone is heard. It is imperative that one has a strong support structure and therapy. These methods will help to release the stress and keep the family together in a difficult time.
