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 coffees . Shine bright darling boy.

Love you more and more and more , Mummy ,Daddy & Jakey xxxxxxx"

Ollie's Story

Ollie was a happy and cheeky chilled-out boy who loved fire engines and anything with a siren. He was the biggest fan of PJ Mask, Paw Patrol and especially Super Mario. He was known for giving out high fives and loved playing hide & seek and catch!

Just before his 2nd birthday little Ollie was diagnosed with high-risk neuroblastoma. In late November 2018, Ollies 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 Ollies stomach. An emergency ultrasound was called for and a tumour was found in his abdomen.

Ollie was immediately transferred to Addenbrookes 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 cant 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.

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. 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 wouldnt 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& 8thcranial 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.

Ollies parents and treating team decided the treatment pathway for Ollie would be to access a clinical trial that includes two cycles of 8H9 (radioimmunotherapy) treatment followed by hu3f8 antibody treatment in Barcelona. The family then hoped that Ollie would be eligible to receive the Bivalent Vaccine in a clinical trial in New York.

Ollie's family travelled to Barcelona to begin a clinical trial but sadly Ollie relapsed before he could begin treatment. He continued with chemotherapy in Spain until he was stable enough to fly home. Back home scans showed further disease progression.

Ollie's family shared the devastating news that their beautiful boy passed away on Sunday 18th July 2021 surrounded by his family and all his favourite toys.