Do I carry on with everyday life or make special times?
Time is so precious, especially when your child is feeling up to doing things. Choose very carefully how you use this time and be cautious about accepting too many holidays and treats. It’s important to find a balance between enjoying the little things that life has to offer, and making special memories.
Is it important to continue routines?
You’re bound to want to make this time as special as possible but it is important to maintain routines where you can, as well as the good behaviour you normally expect. This goes for brothers and sisters too.
Children and young people like consistency and it will help your child and their siblings feel more secure. Obviously this won’t always be possible so you’ll need to make a judgement call on which routines you can keep in place.
School might seem insignificant but for your children, this sense of normality and activity can be a huge help. You could talk to the school about whether they can support your child going in for part of the day, or arrange a visit with some classmates if they are too unwell but would like to spend time with friends.
How can I create special times?
It’s a nice idea to sit down with your child and talk about the things they might want to do or things you might want to do together as a family. These experiences can not only be great fun but will create some lasting memories for you all to hold on to forever.
Your child might start thinking about a ‘bucket list’ of special things they want to see or do, like going on holiday, watching their favourite team play or meeting a celebrity. Many families treasure these experiences and, although not everything is always possible, there is help to make it happen.
Some charities organise and fund outings, holidays, experiences and gifts for kids and teens with serious conditions – they’ll speak to your child’s consultant to make sure it’s ok from a medical perspective. Together for Short Lives’ factsheet has more info about grants and wishes.
Your Young Lives vs Cancer Social Worker might also be able to point you in the direction of local organisations or grants you could access. Here are some organisations you might want to check out:
Remember though, you don’t have to push the boat out to make memorable moments. Making a memory box can be comforting for your child and their siblings. You can collect special things and then talk together about what’s important and why.
For older children, it can reassure them how significant their life has been and gives them an opportunity to celebrate what a difference they’ve made.
Be guided by your child as they may be most happy with short outings to favourite places, or just doing simple things and familiar things at home or with their friends. The medical team can support you and your child to manage physical symptoms and enable trips and treats.
Taking lots of photos and videos is very important, as is including their siblings in everything. One thing I wish we had done is a cast of my child or our family's hands.
How do I look after my child at home?
It can feel like a big responsibility taking care of your child at home when you don’t know what to expect. Remember that there will always be medical and emotional advice available from the team caring for your child at any time that you need it and from resources on and offline at specialist charities. Planning with your team gives you the best chance for you to get things right with your family.
Sacha, DD's Mum
Instead of going back and forth to the hospital with the unrealistic hope that he was going to be cured and putting him through more suffering, we focused on keeping him calm and comfortable at home. My big fear was that he’d be in pain. That was my biggest terror. But there is nothing that can’t be managed at home. If I can do it, anyone can.
CCLG produce a booklet called Managing symptoms at home which gives information on specific symptoms and general care including nutrition, complementary therapies and relaxation. The booklet contains an in-depth list of symptoms and it’s unlikely that your child will experience all of these. Speak to your child’s nurse or someone involved in their care if you have any worries, or for more guidance.
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