Our Story

That was until late August 2018 when Ellis began to change, something wasn’t right. He no longer wanted to play, he was losing weight, and he had no energy. We were convinced that he had a food allergy, but after numerous visits to the GP, nothing was showing up and they had no answers.

On Thursday 21st March 2019, Ellis had an X-ray at Poole. The doctors then delivered the news that no parent can prepare for; Ellis- our beautiful boy- had a significant tumour in his chest and abdominals. The tumour had completely deflated his left lung and was pushing into his stomach. An ambulance was waiting to take us to the PIAM Brown ward in Southampton but before we got in they had to tell Ellis he had cancer.

The night was a blur, so were the next few weeks. We were consumed by persistent uncontrollable fear. We forgot how to eat, sleep and breath. People came and went, and all the while Ellis smiled, laughed and joked. Within 24 hours of arriving at Piam Brown, Ellis was hooked up to 8 different machines and was receiving emergency chemotherapy. We were told Ellis had high risk, stage 4 Neuroblastoma. His chances of surviving the next 5 years were less than 50%. It was beyond comprehension.

We were lost.

Over the next 9 months, Ellis was refused surgery twice because his tumour was too large. On the third and final attempt, an amazing surgeon-Dr Wheeler- went against the advice of his peers and took a chance on Ellis. He successfully removed 85% of his tumour but was not able to remove the remaining 15% as it was wrapped around the vocal cord and in his spinal canal.

Ellis went on to have high dose chemotherapy with a stem cell transplant in the run up to Christmas 2019. The process meant that Ellis was sick uncontrollably for days and when conscious, he could hardly speak. Heartbreakingly, he would mouth ‘sorry’ when he did come around. The reality was he had nothing to be sorry for- far from it. He was in protective isolation but he smiled when his grandad put a small artificial tree in his room and when his friends sent cards and pictures. He was finally reunited with his brother when his nutrophils recovered after around 40 days. That was a truly beautiful moment. We spent Christmas day together on the ward. We were so grateful.

We then travelled to UCLH in January for a month of radiotherapy followed by 6 months of immunotherapy which was made slightly more complicated with the arrival of covid.

We then had time away from treatment. Ellis still had remaining disease but it was stable. We learnt to be normal for a while. We went on holiday, we laughed, we loved, and we were thankful that the world was in lockdown, allowing us to spend time together.

Every 3 months Ellis would have a whole body MRI, MIBG scans and other tests. Thankfully they kept returning as ‘no new growth.’ Everytime we celebrated as it meant 3 more months of Ellis. Ellis had always wanted a baby sister and in this time we had Olivia, The boys adored her. These were the best days of our lives.

In 2023 we received the news that the tumour had grown. It all began again. When the chemotherapy made no impact we were told there was nothing more they could do for Ellis other than a clinical trial and so we were sent to London UCLH for a MIBG trial. This required Ellis to be imprisoned in a led-lined room for a month as he was radioactive and so a danger to others. The trial was gruelling and took it’s tole. For the first time, his smile faded. Sadly, the trial also damaged his liver and so had to be stopped. Ellis needed a lot of procedures to overcome the damage the trial caused.

After Ellis returned to school and began his final chapter; Year 6. Away from treatment he flourished. He was a normal kid doing what kid’s should do. We crammed the fun in. We photographed everything. We knew what was coming but nothing could have really prepared us. How could he be ill, he was so gorgeous and happy!

We watched Ellis with his friends playing Fortnight, going to the disco, having sleepovers and eating Dominoes. We watched him with his brother and sister, so proud, loving and loyal and we cuddled him non-stop. We drove him mad, but we couldn’t stop the cancer inside him. Ellis and William made a list of all the things they wanted to do, and we did whatever we could to bring them happiness. He wanted to do it all! To live to the maximum until he couldn’t. Ellis was determined to finish Year 6, to attend the school residential and to go to his leavers party. He did it all and once he had ticked off his to do list he finally gave in. He laid with us that last week and we talked so much.

We talked of all our memories, of our amazing time together.

Why the Ellis Edwards Foundation

Ellis taught us that you have to continue to live life to the full, no matter what you are going through. He lived life with the biggest smile on his face and did everything he could to help others, even though he was going through so much himself. Ellis absolutely adored his little brother William and little sister, his princess Olivia. Since Ellis has passed away, we have realised that the support for children left behind by the death of a sibling or parent to cancer is under supported. We feel that children need to be able to talk about this traumatic experience at a young age to be able to cope moving forward. Our aim is to try to help children to see a glimmer of light on their darkest days. We aspire to achieve this by offering days out, trips to sporting event, activity days, breaks away and counselling to give them a short break from the weight of cried so that they can recharge and be more ready so that eventually they be able to continue to live their life alongside their grief.