Remy’s Story
Remy was diagnosed with Stage Four High-Risk neuroblastoma at just one year old. After complications post surgery that led to E-Coli and Sepsis, Remy sadly died. Katy, Remy’s Mum, shares his story…
Remy was the kind of child who changed every room he walked into. He was funny, cheeky, loving, and full of life, a little boy with the biggest personality and the brightest smile. When he was diagnosed with metastatic high risk neuroblastoma at just one year old, our world shattered, but Remy faced everything with a strength that didn’t seem possible for someone so small.
Since birth we had been taking Remy in to see his GP for chronic diarrhoea, and then sudden severe constipation, however we were turned away by each Dr. We never heard results back from his stool sample about the chronic diarrhoea, and he was prescribed lactulose for his constipation and sent home. It was only when Remy developed bruising around both of his eyes, that major concern was raised.
Remy’s primary tumour was located in his left abdomen, it was a large tumour measuring 11cm x 10cm, around the size of a small melon. Remy’s primary tumour had complete encasement of his aorta, alongside a few other vital veins and arteries, as well as involvement with both adrenal glands. Remy’s cancer was metastatic, it had spread to many of his bone areas, including his femurs, tibias, pelvis, spine, frontal skull bones, and the bones surrounding his eyes, the cancer had also spread to his bone marrow by 5%.
Remy’s extensive treatment plan consisted of induction chemotherapy (rapid COJEC), surgery, High dose chemotherapy and stem cell transplant, radiotherapy, and then immunotherapy. He was responding amazingly to his induction chemotherapy, however the tumour hadn’t shrunk enough to be able to safely undergo the surgery. Instead, it was decided Remy would first have high dose chemotherapy with the stem cell transplant.
Remy underwent a lengthy few days of being hooked up to a machine for the stem cell harvest. As per the trial he was randomised to receive only one cycle of the high dose chemotherapy and stem cell transplant. This portion of his treatment I believe was genuinely the hardest for him. Remy suffered with severe sensitive skin and mucositis, which led to him refusing to open his mouth for two weeks. He hadn’t eaten in weeks, and then eventually stopped taking fluids orally too.
Remy was in hospital for two months. He suffered with so much fatigue, nausea and vomiting, even to the extent of throwing up large amounts of blood every day for a couple of weeks straight. He received genuinely countless blood, platelet, and octaplast transfusions.
However, he somehow did what he always did, and he bounced right back.
Slowly he started opening his mouth again, he started babbling, he was interested in playing, and dancing. Despite all that he was going through, throughout his stay at Great Ormond Street, I can say that he was happiest when he was able to have a nice, warm bubble bath, and that just sums him up completely.
Remy was discharged from Great Ormond Street hospital at the end of October 2025. We had amazing news that his tumour had shrunk further, which meant the surgery could go ahead. His tumour was still in a very risky place, and it still had involvement with his aorta and other vital veins and arteries, but his consultant genuinely felt that the benefits of the surgery outweighed the risks.
Remy got to spend a good solid month as an outpatient, and he was loving every moment of it. He was delayed in quite a few milestones due to the cancer being metastatic, but once it had cleared from all bone areas, and he was able to explore things again after his lengthy GOSH stay, he caught up so well.
He was genuinely thriving. He was happy, he was his hilarious self, his appetite was coming back strong, he was Remy.
We finally received a date for Remy’s surgery in December 2025. The month at home passed, and Remy was admitted at about 7am at Addenbrookes hospital for his surgery. He was in the theatre for around 12 hours. The surgery itself was a huge success, his surgeon was thrilled. They had removed more than 90% of the tumour. Remy lost a major amount of fluid throughout the surgery though and this led to complications and Remy’s 24 hour PICU stay had to be extended. During his PICU admission, Remy was heavily sedated with muscle relaxants, he was also on a ventilator.
Remy was then diagnosed with E.Coli that had developed into sepsis, his team believed that he had caught it during his surgery. They promptly treated him with strong antibiotics and they believed that Remy was turning a corner. Seven days post surgery, Remy was still in PICU, on the ventilator, heavily sedated, but in the morning of that day he had passed some blood in his nappy. This prompted the team to schedule a scan, and upon exiting the CT scan room, he collapsed. Remy went into cardiac arrest, and they couldn’t get him back.
Remy truly did put up a fight against cancer. And had he been given a chance to survive in his final hours, then I know in my heart that he most certainly would have. Every part of the treatment he went through, he got knocked down, but he never failed to get back up. Post surgery they had sent off the tumour that they had removed for testing, and the results came back that more than half of the tumour was necrotic. He was genuinely beating the cancer.
Remy’s journey was extremely hard, but I would do it all again with him in a heartbeat. He gave me life just as much as I gave him life. He had an immense amount of support from me, his dad, aunties, cousins, uncle, nan, grandads; he never went a day without love. He showed me what true love, strength, and courage is, and I carry him forward with me every single day. He will forever be remembered as the amazing, strong, hilarious, beautiful little boy that he is. Despite everything that he went through, he was still a little boy who loved music, Buzz Lightyear and Moana.
He was a little boy who truly loved being alive.
There is not enough funding, nor awareness towards childhood cancer. I will continue to be Remy’s voice, I will continue to advocate for him, and to raise as much awareness as I possibly can. I don’t view it as Remy lost his battle to cancer, because the amazing fight that he put up truly makes it a victory. Remy endured so much in his short life, countless scans, injections, catheters, transfusions, so many unthinkable things that no child should have to go through. Yet every day he pushed through.
I will forever be amazed by him, and there will never be a day where I don’t carry him forward with me.
