The emotional costs of childhood cancer

The fight against childhood cancer is physically brutal, but the emotional impacts can be even more severe, reaching far beyond the child themselves and continuing long past the end of treatment.

Imagine being told your child has cancer, and then being told you have 4 hours to uproot the entire family and move closer to the hospital. Your children have to start in new schools, make new friends; you have to find new jobs and new accommodations, and make arrangements for the house you’ve left behind – all without knowing how long you’ll have to stay. Often one parent has to leave their job to care for the child, but the bills still need to be paid. Someone has to go to work every day and pretend that everything is normal, when in reality it all feels meaningless and fake, and all you want to do is scream at the next person who complains that they are having a bad day.

After the initial shock of diagnosis wears off, a constant smothering fog of fear and anxiety descends, but you laugh and smile, and put on a brave face. Imagine being forced to deny your 1 year old food, drink or the comfort of nursing all day, on their birthday, for a procedure that never eventuates. Imagine holding it together all day because your child needs you, and then waking at 3am to vomit violently and repeatedly into the nearest sink from the anxiety of their forthcoming surgery. It can be weeks before all the diagnostic tests are complete and a definite diagnosis is given – and with that comes a prognosis, which can be upwards of a 90% chance of survival (as with acute lymphoblastic leukemia), or 0% (for DIPG, a type of brain cancer).

Picture your child’s pain as they face the unfairness of it all, when their friends are off on school camp, and they are in hospital having chemo which they know will strip the skin from the inside of their mouth and make them vomit uncontrollably. Picture having to hold them down over and over again as their little body is tortured and poisoned, and then trying to comfort them afterwards, knowing you helped inflict that pain. Imagine having to keep your child confined to a single hospital room for weeks on end, denied even a single breath of fresh air. How do you explain why this happened to them? You know that it has to be done, but alone in the dark, when they are finally sleeping, your heart breaks into a million pieces and leaks from your eyes like acid rain, your throat clenching so tight you can barely breathe as you struggle not to wake them again for just one more kiss.

Imagine hearing your child ask if they are dying, and having to tell them yes. Holding them in your arms as they draw their last breath, watching as their little body is lowered into the cold, damp ground.

And what of your other child, the healthy one who is now terrified of their own mortality, watching the suffering of their best friend, no longer able to play together, and always feeling a distant second in the shadows of the cancer kid? Siblings develop anxiety, panic attacks and separation issues, feeling less important and less loved, even jealous of their sick brother or sister. Imagine telling your child they can’t go to a friend’s house to play, because they might bring home an infection. Picture explaining the physical changes they witness when their sibling goes from seemingly healthy to bald, grey, wasted and wheelchair-bound, because of the medicine the doctors have given them. Imagine your son confessing he wishes his baby brother would die, so that he would not have to suffer any more. Yet your heart explodes with joy when your family is all together, laughing and being normal in those moments they are well.

As a grandparent, you witness the pain two-fold, seeing the pain of your child as they fight for their baby’s life, and knowing there is nothing you can do to make things better.

After the cancer is beaten, there is elation, pure relief and untold joy. And there is horrible guilt that your child has survived, when others have not. And the happiness is soon overshadowed as you attempt to return to normal life – the adjustment is jarring. Everything you’ve known while in treatment, all the families, all the support systems you relied upon so heavily for so long are ripped away, and once again you feel isolated, disoriented and alone.

And the anxiety continues. Post-traumatic stress disorder (PTSD) is incredibly common among the parents, siblings and grandparents of children who have faced cancer. Every time your child is due for another scan or doctor’s appointment, every time one of your children is unwell, or looks tired, or sleeps more than usual, the panic comes bubbling up again to smother you. Driving past the hospital puts butterflies in the pit of your stomach, even if you’re only heading to a nearby playground. You know that secondary cancer can come 10 years after treatment, that heart damage can be found 30 years later, and you struggle with the fear, the guilt of not having got that diagnosis sooner, the regret of the time lost with your other children, of what your family had to go through.

If you have never been touched by childhood cancer, acknowledge that you can never truly understand what it is like, but don’t let that stop you from reaching out to help. Even the simplest things can help lighten the load and give families time to reconnect, and knowing that others care can be a great source of strength and light in some of the darkest times most families will ever face. Don’t be afraid to ask what you can do to make a difference.

This post is part of our series in support of Go Gold Australia and Childhood Cancer Awareness month.
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