Stress and fatigue heightens sensitivity. Well meant words can deeply hurt the family of a child with cancer.
The following are suggestions from parents of words and actions to avoid. Though by no means exhaustive, this will help guide you in choosing your words.
Remember too that you don’t have to say anything at all. Often a silent hug is the greatest comfort.
“Don’t keep telling us how brave we are. We aren’t facing this nightmare from choice. We are just ordinary people battling extraordinary circumstances.”
“Don’t tell us you know exactly how we feel. You simply cannot know what we are feeling unless you have / had a child with cancer yourself.”
“Don’t criticise our treatment choices, especially when our child’s eye is to be removed. We are advised by specialist doctors and have researched each possible treatment. The decisions we make are excruciatingly hard, and removing our child’s eye sounds barbaric to us too, but we know it is the best way to save our child’s life. It doesn’t help to be told ‘there must be another option’ or ‘how can you let them do that?’ We are devastated too, but saving our child’s life takes priority over saving an eye.”
“Please don’t say ‘Doctors can do so many wonderful things to treat cancer now’. – my daughter is throwing up from chemo. Her hair has fallen out and she may face second cancers because she had cranial-radiation so young. That isn’t wonderful.”
“Never ask ‘How long will she live?’ Even if our child is dying, we cannot answer that question. We only cherish every day we have together.”
“A work colleague said to me, ‘well, life is a terminal condition, we’re all going to die some day’. I almost hit him. No family should have to face the potential death of a child. I’m sure he was just struggling for something to say, but I’d rather he’d kept his mouth shut in that instance.”
“Do not say ‘you can have more kids’. That implies our child with eye cancer is less than perfect – that we can try again to have a ‘normal’ child.”
“Never imply that we are to blame for our child’s cancer. We feel guilty enough, even without reason. Never suggest we should not have had children if the cancer is inherited.”
“Don’t belittle the fear we feel for our child. We can never worry too much, no matter how much we trust God, or how stable the cancer is.”
“Don’t ask us ‘what if’’. For example, ‘What if the insurance doesn’t pay out?”, “what if her treatment doesn’t work?’ or ‘what if the cancer spreads?’ The current battle is all that most parents can deal with in the present moment.”
“My brother-in-law asked ‘how will you pay for all her treatment?’, when Hannah was taking her anti-nausea meds. She was 8 at the time, and worried for weeks that we could not afford to make her well again.”
“When people used the word see, they would get all upset and then try to avoid the word. It is ok. My child does see – just in a different way.“
“Do not try to hush others when they talk about the cancer. It is ok to talk about it.”
“Don’t exclude the child or family. Cancer is NOT contagious, and facial disfigurement is NOT evil.”
“Please don’t avoid the subject of our child’s cancer, but don’t make constant comments or conversation about cancer either. We need to share in normal conversations and activities too. They keep us in touch with the world.”
“While visiting me at the parent’s accommodation in our hospital, my sister-in-law said ‘gosh it’s fab here, just like a luxury hotel’. My response was one of absolute horror. I wanted to be anywhere but there – there with my baby while she underwent radiotherapy to treat a life-threatening cancer. Those words hurt me deeply.”
“Don’t place unnecessary demands on us. One of my friends always ended up crying when we spoke about Sara, and I would have to comfort her – when I needed friends to comfort me. Another friend offered to look after our garden, but continually sought our advice on how to do it. In the end we had to ask him to stop coming because we just couldn’t deal with the stress.”
“Please don’t tell us ‘This is God’s will’. You might firmly believe that, but I can never believe God would allow one of His precious children to suffer in such a horrific way. That goes against everything He stands for as a ‘Loving Father’.”
“Friends kept saying ‘God never gives us more than we can handle’, but we couldn’t handle this. Our little boy was dying, and people wanted us to believe that God knew we could deal with that? At the time, we simply couldn’t cope with the burden of Joshua’s cancer. We are a Christian family and knew Josh would soon be with Jesus, but we were made to feel like if we had a stronger faith, everything would be OK, and it wouldn’t matter that Josh was going to die.”
“There is a difference between what we desperately desire, and what God knows to be our greatest need. Sometimes, the only way He can heal is to guide the hands of the surgeon removing our child’s eye, or to send His angels to bring her home to Him. Please, please don’t shipwreck someone’s faith or double their anguish by implying bad things are happening to their child because they aren’t praying enough.“