Reggie's story
Reggie was diagnosed with stage three neuroblastoma in November 2020 after he became unwell with a high temperature and constipation. Doctors initially suspected a tummy bug or appendicitis. But a scan revealed a tumour attached to his adrenal gland. Just one month after he rang the end of treatment bell in June 2021, Reggie relapsed. He sadly passed away on 17th July 2021. Reggie’s mum Jo shares their story.
Raising awareness of neuroblastoma
“We will help in any way we can to raise awareness of neuroblastoma. We want to keep Reggie’s memory alive - and stop other families going through what we experienced. ”
Reggie with his mum, dad and baby brother
“Before Reggie was diagnosed, we hadn’t heard anything at all about neuroblastoma. We didn’t know how it affects children and we didn’t know how high the relapse rate was. That’s why we do what we do with our Remembering Reggie day. This year, we raised over £9,000 to help Neuroblastoma UK carry on their amazing work and fund more research into neuroblastoma.
“We honestly can’t thank everyone who has donated and who helped us raise awareness and money for an amazing charity. We will help in any way we can to raise awareness of neuroblastoma. We want to keep Reggie’s memory alive - and stop other families going through what we experienced. There are so many different childhood cancers; you just don’t know how devastating neuroblastoma it is until it affects your family. We want to raise as much awareness as we can so people don't think 'it's just a tummy bug'.”
Reggie’s story
“I know a lot of people already know Reggie’s story and followed him every step of the way but I thought I’d tell it for the people who don’t know his story and why our “Remembering Reggie Day” is so important to us.
27th November 2020
Reggie was feeling poorly and not up to going into nursery. With us being in the middle of the pandemic, we thought best to try and get him into the doctors but because he had a high temperature, our doctor referred him to our local hospital.
One of the symptoms Reggie had other than the high temperature was constipation. This wasn’t unusual for him, we had spent a lot of time at the doctors but we were told it was nothing to be worried about.
The doctors at the hospital decided they would do an ultrasound on Reg, they suspected it could be appendicitis. Later that afternoon we got the devastating news that it was cancer. He was referred straight to Manchester Children’s Hospital and the tests began to diagnose the tumour and the stage it was at.
December 2020
Reggie had spent three weeks in hospital being poked and prodded, scan after scan, a Hickman line fitted and his first round of chemotherapy.
During all this we were given the news his tumour was neuroblastoma. It was attached to his adrenal gland and was staged at stage 3. This meant the tumour was only in the primary location and hadn’t spread to anywhere else in the body. This meant he had a good chance of beating it!
January - April 2021
Reggie had five more rounds of chemotherapy. Some days, these could be 13 hours of treatment.
23rd June 2021
Reg rang the end of treatment bell!
He still needed an operation to remove the four of the five tumours they found. The one they couldn’t remove was a dead tumour. Its position caused more of a risk to Reggie’s life to try and remove it. We were reassured the chemotherapy had worked so well and that the tumour wasn’t active.
June 2021
We had lots of meetings with the doctors and the play team at Christie’s Hospital to plan the radiotherapy. The next stage for Reggie was three weeks of daily treatment, Monday to Friday. Reg was so scared of the radiotherapy machines, so the best way forward for Reggie was to be sedated.
On 24th June, he rang the bell again! Me, his dad and his baby brother were all there to watch him and we were so proud of how well he had done. We knew his journey was far from over but with all the positive feedback from his consultant, we were sure he wouldn’t need anymore treatment.
July 2021
Reggie was a true superhero
Reggie began to tell us his belly was sore again, he was constipated again. We had a team of community nurses who came to the house weekly to clean his Hickman line between/after treatment. They were concerned that Reg may have an infection in his line and they sent him straight to the day case ward at Manchester Children’s Hospital. This was the 7th July - and the last day Reggie was ever at home.
Reggie was admitted to ward 84 and each day he became worse. At this point we didn’t know the cancer had come back. After eight days in hospital, Reggie got moved to PICU. He was struggling to breathe on his own and needed one to one care. The decision was made to put Reggie into an induced coma to help his body rest. Hopefully he would get fit enough to have scans/tests to see what was actually going on.
During an X-ray to check they had inserted the tubes correctly, a mass was found in Reggie’s tummy. During the night they did a full and in-depth body scan.
Saturday 17th July - 9:30am
“We were given the heartbreaking news there was nothing more they could do for Reggie. At 5:30pm we said our final goodbyes to our beautiful, brave boy.”
We were given the heartbreaking news there was nothing more they could do for Reggie. He had relapsed and the cancer was so aggressive it had spread. It was in his liver, lung, stomach, bowel, bones, kidney, urinal gland, eye and was beginning to form on his brain.
At 5:30pm we said our final goodbyes to our beautiful, brave boy.
Thank you to Jo for bravely sharing Reggie’s story with us.
Every week in the UK, around two children just like Reggie are diagnosed with neuroblastoma, an often aggressive childhood cancer. Sadly, for the 50% of children diagnosed with high-risk neuroblastoma, the survival rate is around 40-50%. And if a child relapses, their chances of survival reduces to just 10%.
GLOW GOLD REFLECTION DAYS
Our Glow Gold Reflection Days give you a moment to reflect and remember children like Reggie. Please join us and light a Gold Ribbon candle to remember the children we’ve sadly lost to neuroblastoma and show your support for everyone affected by childhood cancer.