| "'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." “How long will she live?” "A work colleague said to me, 'well, life is a terminal condition, so 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." "When Joshua died, some people said our other children would 'help to ease the pain of it all', and suggested that we could still have other children. We have since had beautiful, delightful twin girls, and though we love them dearly, they will never ever replace Josh." "Do not say ' you can have more kids'. That implies that our child with 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 ever 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." "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." "The last thing we needed was someone's negative opinions about what we were doing to help our daughter." "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." "Don't share stories of children who have died, or who have long- term side effects from their cancer. As parents, we have sought information about each treatment, but the decisions we must make are excruciatingly hard, and it really doesn't help to be constantly reminded of the potential risks." "When talking to a family of a child with cancer, I strongly feel that statistics should be avoided. The truth is that cancer, no mater how successfully it is treated, can come back, no mater how small the odds might be. Avoid getting caught up in statistics, for example, 'Your child is three years out from her last tumor. I think we can safely say, she will be fine.' These statements are what give parents a false sense of security. For those families who are faced with a secondary cancer with their child, the stats quoted in the literature and by medical professionals can be thrown out the window." "Do not try to hush others when they talk about the cancer. It is ok to talk about it. " "Don't avoid the subject of our child's cancer, but please don't make constant comments or conversation about cancer either. We do appreciate normal conversations and activities too. They keep us in touch with the wider world." "Don't make personal comments or ask personal questions in front of the children. My brother-in-law asked 'how will you pay for all her treatment?', once 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." "Don't be insensitive. For example: whilst visiting me at the parent and child accommodation within 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 else but there - there with my baby whilst she underwent radiotherapy to treat a life-threatening cancer. Those words hurt me deeply." “When people used to use the word 'see', they would get all upset and then they would try to avoid the word. It is ok, since my child did see - it was just in a different way. “ "Don't ask parents to let you know if there is anything you can do. They'll have to remember who you are, and then get in touch with you. Far better to suggest something and then do it." "Don't place unnecessary demands on us as parents. 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." "Don't exclude the child or family. Cancer is NOT contagious " |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Communicaticating with the family of a child with cancer. |
| ORPHANS OF THE CANCER STORM |
| Disclaimer This information page has been prepared by an individual who does not have medical training. Contributions have been shared by the parents of children diagnosed with retinoblastoma or optic glioma. Orphans of the Cancer Storm cannot make any assurances relating to the validity of medical information contained within this page. The OCS website is intended for information purposes only and should not be used as a guide to diagnosis or treatment. If this information raises any concerns about your child’s condition or care protocol, discuss them with his or her paediatrician, oncologist, or other appropriate medical professional who has knowledge of the case. |
| Words And Actions Which Do Not Help. |
