Ollie sitting on a staircase

Ollie celebrated his 3rd birthday in February this year. He is a happy and cheeky chilled out boy who loves fire engines, cars, planes and especially trains. He’s a big fan of PJ Mask, Paw Patrol, Buzz Lightyear and Fireman Sam and is known for giving out high fives!

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. They are looking to raise at least £241,000 so Ollie can receive a clinical trial vaccine in New York that aims to keep the cancer from coming back.  

Diagnosis

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.

Remission

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.

Relapse

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 (brain stem) which following a biopsy was confirmed as neuroblastoma. 10-20% of the tumour was removed during surgery and following two rounds of chemotherapy, Ollie was back in remission.

Chances of long term survival with relapse neuroblastoma are less than 10% but Ollie’s parents and treating team are looking for the right pathway that might prevent his neuroblastoma from coming back again. The solution may require travelling abroad for the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York – this aims to prevent the cancer coming back and is showing some promising results in those patients who have suffered a relapse.

Fundraising campaign

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 the £241,000 originally calculated so Ollie can receive the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York that aims to keep the cancer from coming back.  

Please help give Ollie the best chance of beating this devastating disease.

How you can help

There are many ways you can help Ollie: by making a personal donation; by sharing his story on Facebook, holding a fundraising event; getting sponsored to take on a challenge.

To donate by text, send “OLLIESWEENEY” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.

Download our free Ollie resources below, to support your fundraising.

Sponsorship Form Campaign Poster Event Poster

You can make a donation via this page.

If you’d like to help supporting Ollie’s campaign, please get in touch with the fundraising team on 0207 284 0800 and [email protected]

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