In loving memory of Ollie Sweeney

Ollie's family shared the devastating news that their beautiful boy passed away on Sunday 18th July 2021.
"On Sunday 18th July at 15:51, Ollie peacefully gained his perfect little super Mario wings surrounded by all his favourite toy figures (neatly arranged into sandwich bags, just how he liked ), cuddling his favourite teddies with blues clues playing on the TV.
My god, we miss you so much Ollie, but it comforts us to think you are no longer suffering and by now you have found all your C2 friends and have invited them all to the beach to dig holes.
Thank you to our family who have simply just been there for us the last few days
Thank you to Vicky and Philip at the chequers for your constant supply of food and coffee’s
Shine bright darling boy.
Love you more and more and more , Mummy ,Daddy & Jakey xxxxxxx"

Ollie's Story

Ollie celebrated his 4th birthday in February this year. He is a happy and cheeky chilled out boy who loves fire engines and anything with
 a siren. He’s a big fan of PJ Mask, Paw Patrol and especially Super Mario. He is known for giving out high fives and loves playing hide & seek and catch!

Just before his 2nd birthday little Ollie was diagnosed with high-risk neuroblastoma. Since then he has undergone invasive and intensive treatment, including lots of rounds of chemotherapy, high-dose chemotherapy, 12 hours of surgery, stem cell harvest, radiotherapy and numerous side effects from these treatments. He has endured so many blood transfusions, platelet transfusions, painkillers, antibiotics and so much more.  Throughout all of the treatment, Ollie continued to smile and be happy to play with his toys. His scans showed that he was no evidence of disease (NED) at the end of treatment and throughout immunotherapy which finished in April 2020.

In July 2020 Ollie became ill and the family were given the devastating news that Ollie had relapsed. Following treatment to Ollie’s relapse neuroblastoma, Ollie is now NED again. 

Ollie’s mum and dad, Lucy and Gary, are determined to do everything they can to give him the best possible chance of beating this awful disease. Thanks to your amazing support, Ollie will shortly begin to receive 8H9 treatment, which will hopefully prevent a further CNS relapse, at Hospital Sant Joan de Déu Barcelona in Spain followed by hu3f8 antibody treatment using funds already raised. 

Once Ollie has completed Hu3f8, the family hope he will be eligible to enrol on the Bivalent Vaccine clinical trial in New York later this year which aims to prevent the cancer from coming back and is showing some promising results in those patients who have suffered a relapse. The cost of the trial and all associated costs will cost around £200,000. 


In late November 2018, Ollie’s parents started to notice a change in him.

“He became a very sad child. He was getting very clingy and unsociable – completely the opposite to how he usually is,” say Gary and Lucy. “He stopped enjoying the things he loved doing like going to nursery and swimming. He stopped eating and only wanted to sit watching TV.”

They noticed his skin becoming translucent and his veins being very visible. “His stomach was also very swollen and his belly button bulged out. He was very irritable when it came to changing his nappy.”

They took Ollie to the doctors on many occasions with high temperatures and sometimes sickness. They thought it was just a viral infection and it would work itself out. But after several visits, Gary and Lucy insisted on seeing their local GP who immediately referred Ollie to the Paediatric ward at Luton and Dunstable hospital.

Blood tests were taken which found Ollie to be anaemic. But just before he was to be discharged, a doctor asked to feel Ollie’s stomach. An emergency ultrasound was called for and a tumour was found in his abdomen.

Hearing the word ‘neuroblastoma’

Ollie was immediately transferred to Addenbrooke’s hospital. After several days of testing and scans it was finally confirmed on January 9th 2019 that Ollie had stage 4 high-risk neuroblastoma.

“He had a tumour in his abdomen around one of his kidneys and another tumour growing behind his right eye, which was pushing on his eyeball. The cancer had also spread to his bone marrow,” say Gary and Lucy.

“We can’t even describe the feelings we felt when we were told. It was quite simply the worst day of our lives. No one can prepare you for it, but we had to accept it and be strong for Ollie. We decided that no one was allowed to cry around him – if we felt ourselves feeling emotional we left the room for a moment and just try to be positive around him.”

Starting treatment immediately

Ollie started chemotherapy the day after his diagnosis and then had surgery and more intensive chemotherapy, which involved being in isolation for weeks.

“We already noticed the difference in him. It was like we had our old Ollie back. Running around, playing with his cars and wanting to interact with other children once again.”

Ollie then had radiotherapy before starting several months of immunotherapy - due to finish in April/May.


Following radiotherapy, Ollie had clear scans in September 2019 and was doing really well. Immunotherapy started in November 2019 and Ollie remained clear of disease all the way through to the end of his treatment in April 2020. Having responded so well to treatment up to this point and doing so well it was agreed that Ollie wouldn’t be put through anymore harsh treatments.


In July 2020 Ollie became suddenly unwell and was admitted to Addenbrookes. An MRI scan found a tumour sitting on his 7th & 8th cranial nerve near the brain stem, which following a biopsy was confirmed to be relapsed neuroblastoma. 10-20% of the tumour was removed during surgery and following intensive chemotherapy, Ollie was back in remission. Ollie continued on to receive more chemotherapy, and cranial-spinal radiation.  

Next Steps

Chances of long-term survival with relapse neuroblastoma are less than 10%. Ollie’s parents and treating team have decided the treatment pathway for Ollie will be to access a clinical trial that includes two cycles of 8H9 (radioimmunotherapy) treatment without delay followed by hu3f8 antibody treatment in Barcelona. The family then hope that Ollie will be eligible to receive the Bivalent Vaccine in a clinical trial in New York later this year which aims to prevent the cancer from coming back and is showing some promising results in those patients who have suffered a relapse. 

Ollie’s mum and dad, Lucy and Gary, are determined to do everything they can to give him the best possible chance of beating high-risk neuroblastoma. They need to raise at least £500,000 in total for Ollie to receive the three different treatments. 

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