Date published: 05 April 2023 by Katie Inglis
For this year's National Sibling Day we are featuring Lucy's story to highlight the importance of sibling support for families with a seriously ill child. René and John share their experience of support for their daughter Molly when Molly's sister, Lucy, was diagnosed with cancer.
René and John are parents to one year old Lucy and seven-year-old Molly. In July 2022, René noticed a strange lump while changing Lucy’s nappy one evening and knew straight away that she needed to get it checked. René took Lucy to their local A&E where they were immediately sent to Bristol Royal Infirmary. Things happened very quickly, but after a biopsy and an MRI scan, the doctors informed Lucy’s parents that the lump was a cancerous tumour. They were then told they needed to start thinking about starting chemotherapy immediately.
René described this time as an ‘instant rollercoaster of madness’. She explained how their lives changed instantly after Lucy’s diagnosis.
‘John went from a full-time job to completely no work as his employers were amazing and let him take sick leave. I had to stop my business as I work part-time looking after the girls, so I had to give that up too. It was an instant life change.’
Lucy spent long period of time in hospital receiving treatment, and this completely changed their family routines and daily life. René also explained how relationships with family and friends changed immediately. Because of Lucy’s treatment, they had to be extremely careful with who they mixed with to avoid her getting unwell.
‘It was almost like being in COVID basically. All playdates and baby groups stopped. Whenever we saw someone, we always had to ask, “are you well, is anyone in your family ill”, and if they are then we couldn’t see them. There is no social life. You’re either living in the hospital, or you’re at home. There is a lot to handle, and it is very full on’.
Throughout all the long nights, hospital stays, and treatments, both René and John were reassured that they had the skills they needed to get through this.
‘I know how to keep a smile and keep up the appearance that everything is wonderful but inside you are crying, screaming and at your wits end. For us, keeping Molly and Lucy happy was essential. We knew we had the skills, but nothing can prepare you for the change and the impact this has on your life. John and I have gone through tough times already so we know we can get through stuff, and it’s bought us so close. I knew we could get through this, but I did not know how hard it would be.’
While dealing with the new diagnosis and the disruption that this brought, René and John were aware of the affect this would have on their older daughter, Molly.
‘Initially, we were booking loads of play dates and things like sleepovers for Molly, but she actually said to us that what she really wanted was consistency and to be able to sleep in her own bed – she’s a very articulate seven-year-old! John and I then decided we would alternate spending nights in the hospital, so Molly got at least one of us every night.’
Due to the restrictions of covid, siblings weren’t allowed in the ward where Lucy was. Molly could not see or visit her sister which was very challenging for the family. It was at this point that René and John reached out to Rainbow Trust for support through self-referral. Family Support Worker Wendy has been supporting the family since October 2022.
‘Molly has been amazing, she is such a beautiful and strong character, but she is only seven. We told our oncologists we needed some support because while we were battling with these huge questions, Molly was asking the same big questions. She asked us things like, “why does Lucy have cancer? Will I get cancer? Will you get cancer?” All those fabulously big questions and I love that she is so open and shares how he feels. But she felt very alone at school because she had no friends who had gone through this. She’s also had to see Lucy being poorly a few times, nasty medical stuff – most children will not have seen that.’
Wendy provides sibling support for Molly; she spends time with her after school and the two chat and do arts and crafts together. Wendy has also taken Molly to some groups who also have a sick sibling. Having this support and time for Molly to explore her feelings has been invaluable for the family.
‘It’s really for Molly to have that time and for her having a connection with Wendy who knows how to talk to her and help work through those challenging questions. It is just so precious because it gives Molly a sense of ‘oh I’m important, how I’m feeling counts.’ It gives her space for her emotions. ‘People want to hear what I have to say.’ And that’s what Wendy gives us. She is so wonderful and the way she handles it, she is so gentle but has so much experience and knows what to say. It really really helps, and Molly looks forward to seeing Wendy and they’ve developed a rapport and a relationship, and that’s been great.’
René described how life would be harder without Wendy’s support, as trying to make Molly feel involved as a sibling can be challenging, especially due to the hospital restrictions.
‘It’s reassuring to me as a mum, as I can say to Wend “are we doing okay, is this, okay?”, and knowing she has so much knowledge and experience with siblings is extremely valuable.’
René’s message to other parents who want to reach out for support would be:
‘Don’t be embarrassed and don’t be ashamed, ask for the help because it is there. Be brave and be honest with yourself to know what your limits are. There is help out there and it can come from a charity and that’s okay because they’re there for that! It can really make a big difference, so be brave!’
Donate to Rainbow Trust Children’s Charity today to help us support more families like Lucy’s who are facing the unknown.