Simple tips to stay organised while on treatment: what other parents say

‘Use a whiteboard at home for scheduled care such as mouth care, or use a chalk pen on the bathroom mirror so child/carer can tick off schedule.’

‘Study the treatment protocol and medicine list with a view of understanding the side effects and how to manage them.’

‘Write everything down. Instructions from medical staff, medications given, mouth care schedule, significant medical events from the day, etc – as it is hard to be organised and on top of everything whilst processing the diagnosis.’

‘I popped reminders for medication into my phone with an alarm. This helped me remember the medication that was due at certain times of the day.’

‘Always keep a bag packed and ready for both you and your child for unexpected hospital stays. A couple of changes of clothes, basic toiletries, snacks, a water bottle and a phone charger are all essential.’

‘Diary was most critical in particular where appointments needed to be booked in considering both parents where ever possible.’

‘Ask for a copy of the medical protocol so you can understand the treatment plan ahead.’

‘For parents, it’s handy to keep a spare pillow and blanket in the car too as emergency can have very limited resources on offer for parents.’

‘Always have a notepad and pen handy to record questions, concerns and details of conversations.’

‘Have a list of therapists/clinicians for the nurses to page when you get on ward so you can check in with them each admission.’

‘Have another person with you when in meetings with doctors and keep a folder for all chemo related paperwork.’

‘Take plenty of photos. It may not seem like a time to remember when you’re in the middle of it but it’s good to reflect when it’s over. Also, hang in there.’