Tell your child the truth as they will sense it anyway
We used hold Sebastian down for his port access and NG tubes but we would tell him it will be a quick ouchy and then it will feel better. It’s heart-breaking seeing your child in pain but if you tell them it won’t hurt they won’t trust you when you actually mean it.
If you’re at the Marsden or a hospital with parent washing machines
Take your washing powered and softener it makes you feel so much better having clean clothes that smell like home.
Most of all cry and talk when you need to
In oncology you become one big family everyone understands each other’s pain.
Ask friends and family to visit
When you are in hospital for weeks on end those few hours visits really give you something to focus on.
Don’t Google anything
We didn’t Google but know people that did and they found some really damming stuff. Every child is different so listen to your consultants not goggle.
Meals are vital
We didn’t have a hot meal for two weeks after Sebastian’s diagnosis and when we finally had one it made us feel so much better. If friends and family can bring you meals let them.
Listen to your instincts
You know your child better than anyone. You will have to become their advocate and fight for them. Ask questions whenever you need to.