Rupert's story
After losing his appetite and doctors initially thinking he had appendicitis, three year old Rupert was diagnosed with stage 4 high-risk neuroblastoma in November 2019. His mum Alice shares their story.
Alice and Rupert are supporting our Christmas fundraising appeal to help give children with neuroblastoma a #BrighterFuture. The money raised will help scientists develop new, more effective and kinder treatment for children like Rupert.
From an initial diagnosis of appendicitis to cancer
“It was such a scary time but the hospital team was such a comfort and it felt like the safest place to be.”
Rupert lost his appetite and stopped eating.
“We took Rupert to the doctor in October 2019 when he lost his appetite and stopped eating. They couldn’t find anything wrong and he was otherwise fine but on a second visit they noticed that Rupert’s tummy was slightly swollen.
We were sent to hospital for an ultrasound scan, and they found fluid in his abdomen. He was then rushed to a larger hospital by ambulance with suspected appendicitis.
After that, it was bad news followed by bad news. Rupert was really poorly. They found a large retroperitoneal mass following another scan, and he was diagnosed with high-risk neuroblastoma. It had spread to his bone marrow. He had a central line fitted on the Friday and started chemotherapy on the Saturday. From an initial diagnosis of appendicitis to cancer - it was just horrendous. It was such a scary time but the hospital team was such a comfort and it felt like the safest place to be.
Rupert’s treatment
“His scar is beautiful and you wouldn’t know he’d had such a big procedure. ”
Rupert had chemotherapy every ten days for 80 days, including over Christmas and the New Year.
Rupert was on the Rapid COJEC chemotherapy trial where he had chemotherapy every ten days for 80 days, including over Christmas and the New Year. It was very intense and relentless, we were in the hospital more than we were at home.
He was due to have surgery in early February 2020, but he had low counts in all his blood tests so it was initially postponed. The wait was awful, we just wanted the tumour, all its unknown horribleness out and the surgery out of the way. The surgery lasted nine hours. But Rupert came out of it amazingly. He had two nights in ICU but then really bounced back. His scar is beautiful and you wouldn’t know he’d had such a big procedure.
Just one week after the first national lockdown started, Rupert started his high dose chemotherapy. In a way, it felt like the right time - we were going into isolation for 40 days and it didn’t feel so bad as everyone else was isolating too! But even so, it was quite a bleak period. He was very poorly but thankfully he came through OK without any of the nasty side effects that we were warned about.
Rupert is a very wise and clever little boy, so you can reason with him quite well. He managed to stay completely still for all twelve of his radiotherapy sessions, simply with me reading him a Mr Men story over the tannoy and having a practice session beforehand. We tried to have fun with it where we could. This meant he didn’t need a general anaesthetic each time, which was amazing, and one less thing to worry about.
Taking each day as it comes
Christmas will simply be what will be. We’ll just take each day as it comes.
He’s currently on his fourth round of immunotherapy and is due to finish in January 2021. We’re hoping for his immunotherapy bubble to be taken off on Christmas Eve and fingers crossed we’ll be at home for Christmas Day. But he’s had a few temperature spikes with previous rounds and has needed a hospital stay, so Christmas will simply be what will be.
We don’t tend to make too many plans any more as things can change overnight – we’re reluctant to book a panto or a visit to Father Christmas for it all to be cancelled if Rupert is too poorly. We’ll just take each day as it comes and we’ll celebrate Christmas on a different day if we need to.
Having cancer is not a normal part of childhood
“It was sad having to explain to him that having cancer is not a normal part of childhood.”
Rupert and his little sister.
Rupert is very interested in everything going on and he likes an explanation. He likes to know what is happening during treatment and he now knows exactly what his scans and check ups are for. We’ve dumbed down some of the terminology, initially telling him he had a ‘yucky bit’ in his tummy making him poorly. He’s now starting to learn what tumour, cancer and chemo mean, but in his head, having cancer is normal.
He gets quite excited when he sees other children with an NG tube and he likes to tell people all about it if asked. In the past he has asked when his little sister will get a tube. It was sad having to explain to him that having cancer is not a normal part of childhood. But he’s really looking forward to finally starting school when he finishes treatment - and we’re all hoping to get back to a sense of normality after such an intense year.”
Give a child the gift of a brighter future this Christmas
Your gift could help scientists develop new, more effective and kinder treatment for children like Rupert. To help give a child with neuroblastoma a #BrighterFuture, and save more young lives, please donate today. Thank you.