September 2020 is Childhood Cancer Awareness Month and is symbolised by a gold ribbon, worn to commemorate the event. This is an annual international awareness month to raise support, funding and awareness of childhood cancers and the impact for sufferers and families of sufferers of childhood cancer. (Source – www.awarenessdays.com)
Having been an oncology (cancer) parent that experienced the rollercoaster ride of ups and downs, despair and hope, of being destitute and then being adamant not to give up, I get asked the question so many times. Do children really get cancer?
Yes, they do! It is not a journey I would wish on my worst enemy; however, you acquire a different kind of ‘family’. Even today, 20 years after our son’s death, I still have contact with some of the parents that walked the road.
However, cancer and its treatment may not be the only damaging factors to consider. Childhood cancer is extremely stressful, for the patient and the whole family. Stress begins at the time of diagnosis, when families are confronted by the tremendous burden of understanding the disease and medical terms, and facing the possibility of the child’s death at a young age. Family life is disrupted as families struggle with a ‘new normal’ that consists of frequent hospital visits, and in our case after our son Drisan’s bone marrow transplant ending up in ICU on a ventilator in isolation for 6 weeks, overwhelming medical bills, and a questionable future. The financial impact is immense, and the future a terrifying vastness of uncertainty.
The darkness of fear and depression attempts to overwhelm parents, not knowing if their child will survive. But there is also hope, comradery amongst the staff and parents that make it a little better.
Then there are the stressful and sometimes painful medical procedures that leave a parent in tears because of the feeling of hopelessness. The side effects of the treatment—nausea, fatigue, diarrhoea, vomiting, and hair loss, make it so much harder to just stand by and pray for your child.
Vera van Dalen – CANSA TLC Facebook – “There are many stories about childhood cancer. Few are nice. Many stories are even after years so real and left physical and emotional scars. Oncology is not the place you want your child to be. Some nursing staff working on rotation avoid paediatric oncology. It is easier to work in a unit where the patient stay is short. Then you don’t get to know the people.
In oncology they become family. They become “my people”. We get to know each other. Even if we haven’t met each other, yet know of another oncology family, we relate. We don’t want to, but we do. We convert to become part of a family with scars and memories. Some can walk away, some stay and allow themselves to fall in love with the children time and again.
Parents support each other, cry and pray together and do what they have to, to get through it. In times of loss, it is “the family” that will get you and understand truly where you are.
Outside people don’t know that you don’t only cry for one child, but for the combined bundle of intertwined experiences, hurt, losses and somewhere in there your loss that won’t leave you.
Oncology will change your perceptions. It is September childhood cancer awareness month. CANSA TLC support continues 24/7 every day of the year. We didn’t close our doors for one day during the lockdown. We continue to support it. We still see parents in need. Some are out, some still here.”
Childhood cancer is not a lonely journey, it is filled with ups and downs, of new friends suffering the same as you. The “normal” at home when you suddenly have to clean your child’s port with a solution to prevent it from clogging. The terrible fear of not being sure what to do, knowing if you make a mistake your child can die. Along the journey, you learn to adapt and live one day at a time.
CANSA TLC Facebook page has excellent information on the symptoms of various childhood cancers, a vault of information to assist the parents of a newly diagnosed child. So to finally answer the question again: Yes, children do get cancer. However not all die, there are successes and miracles.
Lastly to my good friend Vera, after Nicus died in 2000, you embraced cancer and are such an amazing person, dedicating your life to helping others understand. To all the parents with oncology children, my only advice is when you get up in the morning, you ask God for strength and courage for the day, and if you get through it, tonight before going to sleep you thank God for it. Live every day, one day at a time. Time does not stand still, don’t lose hope.