Ollie

Ollie’s story  

Just before his second birthday little Ollie was diagnosed with high-risk neuroblastoma. In late November 2018, Ollie’s parents had 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 was,” said 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.

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,” said Gary and Lucy.

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

Ollie went on to have 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. 

In July 2020 Ollie became suddenly unwell and was admitted to Addenbrooke's. An MRI scan found a tumour sitting on his seventh and eighth 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 with the intensive chemotherapy that followed, Ollie was back in remission. Ollie continued on to receive more chemotherapy, and cranial-spinal radiation.  

Ollie’s 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 clinical trial in New York.

Ollie's family travelled to Barcelona to begin treatment but sadly Ollie relapsed. He received 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.

_{Donations made in loving memory of children} 

_{Funds raised in loving memory of Ollie will be used to support other children like Ollie and their families through Solving Kids' Cancer UK's activities. Any funds raised through a previous fundraising campaign for access to treatment which were not spent on the child's treatment and pastoral needs are used to support other children and families through Solving Kids' Cancer UK's activities.}