Rebecca & Heidi’s Story
For International Sibling Day we spoke with Rebecca, who lost her sister Heidi to Neuroblastoma in 2000. 25 years later, Rebecca reflects on her experience of watching her sister battle neuroblastoma and how it has motivated her to start fundraising. Rebecca share’s their story here…
Memories
Heidi was born on the 4th October 1997 and passed away on the 24th September 2000. I was two years old when Heidi was first diagnosed with neuroblastoma - she was just five-weeks-old and had her first round of chemo at just 9 weeks. The treatment at first was successful, but sadly, Heidi relapsed when she was 2 years old leading to another 6 months of chemo, which sadly was unsuccessful. Heidi passed away just ten days before her 3rd birthday.
As I was only five when Heidi passed there isn't a lot I can remember about her, but I do remember that despite everything she was going through, she was still a smiley and happy little girl and what you would expect a toddler to be like. Her attitude and personality wouldn't indicate that she was a cancer patient at all! Her favourite colour was yellow, she was obsessed with the teletubbies (Lala was her favourite, because she was yellow!), she loved to draw and colour, play dress up games, and go on days out to the farm. She absolutely loved KitKats, and the promise of one was sometimes the only way to get her to eat her dinner!.
Heidi spent a lot of time in hospital, so my memories of her at home are very limited, but if you took me to any of the hospitals she stayed in today, I think I could still direct you to the playrooms! We would always visit the playroom to draw and colour when I went to see her in hospital, but our favourite thing to do together was raid the dressing up box and play in the Wendy houses. We had a Wendy house at home in the garden that we played in whenever we could, so I think it was a sense of familiarity for us both.
One of my favourite memories with Heidi at home was when we both woke up earlier than mum and dad one morning and I somehow managed to quietly take her out of her cot so we could go downstairs and play. We emptied our toybox so that we could use it as either a boat or a car in one of our games and I remember putting Heidi in it to be the driver, but not being able to get her out again. So Heidi ended up stuck in the toybox for a while until our parents woke up. I most definitely got told off for both taking her out of her cot and also putting her in the toybox, but as we didn't get to play together very often it was definitely worth the telling off, and that's one of the times we did that has always stuck in my memory!
I lived with my grandparents as my parents took it in turns to stay with Heidi at the hospital. I will always remember sitting in my bedroom at their house on my 5th birthday and ringing my dad and Heidi in the morning to tell them all about the presents I got. I was especially excited to tell her all about the Barbie bakery that she had got me and how excited I was for her to be able to come home so we could play together.
Grieving
When I was younger I don't think I felt that my sister’s illness had an impact on me, but I definitely feel the impact more now that I am older and understand more what it was that she and my parents went through. I definitely think that I grieve more now for the sister I lost and didn't get to know than I did when she was going through her treatment for neuroblastoma and passed away. Seeing my friends' relationships with their siblings develop as we have gotten older to be ones of friendship often leaves me feeling sad, lonely and jealous of what they get to experience.
Although she was only with us for just under 3 years and that doesn't seem like a long time, she has definitely left an impact on us and there is a hole in our family without her.
I think it's tough to say what the impact her journey has had on us as a family. She is missed every day and we often talk about what she might be like and how our lives would be different if she hadn't passed away. But as she was so young when she was diagnosed and passed away, it feels weird to say, but we also don't really know life to be any different as a family.
Grief isn't something that goes away, and it brings up a lot more emotions than sadness or shock, and it's ok and normal to feel different emotions at different stages. I have found that losing a sibling can be lonely and isolating, but being able to channel those forms of grief into a way of memorialising and remembering your sibling really helps and provides a different type of comfort. If I'm having a bad day or feel like I miss my sister a lot, I'll have a KitKat or wear something yellow. Every person’s journey with this experience is unique, especially when it is a sibling, and there’s no right or wrong way to navigate it.
The love and bond you have with your sibling will always be a part of you, and their memory will continue to live on through the stories and memories you, your family and friends shared with them.
You're not alone and it’s okay to lean on others for support when you need it.
Looking forward
This year is 25 years since Heidi passed away and I am also turning 30 - I wanted to do something to mark both of these. I was looking for a way to challenge myself as it feels like a rite of passage that once you hit 30 that the running trainers come on. But I also wanted to do something that would also be in honour of my sister, so this felt like the perfect opportunity for both. We used to fundraise for Neuroblastoma as a family quite a lot when I was younger. We would hold an annual archery competition as we were members of our local club, and all of the money raised through the entry fees, raffle, lunchtime BBQ and cake sale would be donated to Neuroblastoma. This became tricky to continue as a I got older and went to university, and also something that Covid prevented as well. So I'm really excited to be fundraising for Neuroblastoma UK again. Hopefully this will be the first of many times I can do something like this for Heidi.
I think the biggest challenge most of the time is building up the will to leave the house and train, especially when it's wet and windy! I've found having a running plan has helped me overcome this as it's kept me more accountable. But also the thought that I'm not just doing this for me - I'm doing this for my little sister, my parents, the friends they all made on the hospital wards, and the families that have been affected by it since is really important to remember. This has motivated me to put my trainers on when I least wanted to!
Running in memory of Heidi is important to me as it's a way for me to feel closer to my sister and keep her memory alive, but it's also important as I think it's a disease that not many people are aware of, despite the number of children (and families) neuroblastoma affects each year. I want to help raise awareness so that more support can be provided to those currently affected by neuroblastoma.
The headspace that running gives you is the perfect time to switch off from the rest of the world and I've found this really beneficial and comforting to give me the space to think about Heidi, and I'd encourage others to do the same. Use it to think about your loved one in both the memories you were able to share and also some of the what ifs. I used to absolutely hate running, but signing up for this challenge and having the accountability to go out and train has made me start to enjoy it a lot more. I definitely think that space to think that running gives you is a big factor in why I do enjoy it now.
Losing a loved one creates a vulnerability, so don't be too hard on yourself if at certain points you struggle or it seems too much. I've found running in memory of my little sister has allowed me to embrace that vulnerability but also grow from it. When I am really struggling, I like to think that my sister would be proud of me for doing this for her and for all of the other families that have been affected by neuroblastoma, and that’s what helps me push through.
As painful and sore as they might be sometimes, every step is a step towards helping another family or individual going through a similar journey.
We would like to thank Rebecca for sharing her and Heidi’s story and congratulate her on running the London Landmark for Neuroblastoma UK - raising a fantastic £685.
Funding vital research. Saving young lives.
We fund vital research to develop new and more effective treatment for children with neuroblastoma. But we need your help. Please donate today and join the fight against childhood cancer.
