The Oliver Shilton Fund is a Special Named Fund at CCLG raising money for research into Ewing sarcoma, in memory of Oliver.
Oliver was 10 years old when he was diagnosed with Ewing sarcoma. His mum, Nichola, shares his story…
Family life was pretty normal with two boys and a dog. Loud, messy, and busy. We always made the most of the school holidays, camping often with family and friends. The boys had all of their sports clubs, rugby, football and swimming. Any chance Oliver had he was outside (up a tree if preferable). It was a struggle to keep either of them to sit still. Family time has always been important to us too, so family gatherings were always in the calendar. Plus, a lot of friends surrounding us. Having the lads early on meant any free time we had has always been spent together. Football was always on the tv in addition to being big Notts County supporters with Rob, Oliver and Joseph all having season tickets.
Leading up to diagnosis, Oliver started experiencing pain when he walked for an extended period, when previously he could do it with no issue. He took part in his postponed sports day at the end of September 2022, coming in first place. After this, however, he presented as having pulled or strained a muscle, resulting in him having to step back from his football and rugby training and matches. This was something he couldn’t wait to get back to. The pain was in his groin and down his leg, often waking him at night. Neither Calpol nor ibuprofen seemed to help, we would end up running him warm baths which seemed to ease the pain for a short while. After about 2/3 weeks of there seeming to be no improvement, we booked him a GP appointment October 13th, (the day before his brother’s birthday) who advised Dad to take him to the hospital for an x-ray.
They ended up staying at the hospital for over 8 hours, with limited access to food or information, and they needed to repeat the X-ray as it was unclear. We then had to take him back the next day for an MRI. Two weeks later we were contacted by Birmingham Children’s Hospital as they believed that he had an infection in his bone, but he needed to go in for a biopsy to check. That appointment was a further 2 weeks, during which time his pain got progressively worse, especially through the night. He would often be convulsing in pain.
His biopsy was done in Birmingham on 9th November (the day before my birthday). The chance of it being cancer was only briefly mentioned once during a phone call before this. The biopsy took about another 2 weeks to come back as it was from the bone. I received the phone call 22nd November that the results had come back as showing he had Ewing Sarcoma. We then had to tell him and his brother the news. I don’t remember a lot about the conversation, but when he went to bed, I remember him asking if he would die. My reflex answer was no, as obviously the idea of this was something that no parent wants to believe is a possibility.
After diagnosis, it seemed like everything was happening all at once. He needed his Hickman line fitted and a PETCT scan to check if it had spread. He then went straight into his chemotherapy. His treatment plan consisted of 5 different drugs, plus extra to counteract some of the side effects of these medications. In total he had 14 cycles, alternating between 3 and 2 of the different chemo.
This all made him quite unwell, and it was also difficult as he had a fear of sick. Being on a ward where sickness is a normal part of what happens, really effected his anxiety too. He would often refuse to eat whilst on the ward, and would then feel sick when he went home. This stopped him eating as much as he usually did, resulting in him losing quite a lot of weight, and then needing an NG tube fitted. He was so brave to let the nurses fit this as he was always very scared, and every time he needed it replacing he would vomit as a result of the chemo drugs.
Initially we were told if there was only one tumour site, there would be the option of surgery. Unfortunately, after his PETCT we found out that it had already started to spread, meaning surgery was no longer an option. It also meant that the risk of relapse had significantly increased. But Oliver made it through these cycles, meeting each date. The only time there was a delay was due to a request from us, so that we could take him down to Wembley to watch Notts County in the playoff final. It was a fantastic day, and we are so happy that he was able to experience this.
His treatment then ended in June 2023, just a few weeks before his 11th birthday. We also got his results back from his SATS, which were all on target. This was incredible news as he missed almost half of the year by being in hospital so much. Over the summer, whilst waiting for his first check scans, we were able to go on camping holidays with friends and family and also have a summer holiday in Devon to celebrate one of our friends’ wedding. When we came back, he was booked in to have his line removed just in time for him starting at secondary school. He started alongside some of his friends as normal in September 2023. He seemed to be fitting in well and enjoying the independence that he had lost during treatment.
Unfortunately, he then started displaying very similar symptoms as his first diagnosis around the time of his reassessment scans. With some pushing, the doctors then rescanned as the first reassessment was unclear if there were any changes. This confirmed in November 2023 what we had feared and that the cancer was back. For an Ewing Sarcoma relapse, there isn’t a set treatment plan, so we had to make the decision to enrol Oliver onto the rEECur trial. This is when we found out that the chances of Oliver surviving this was almost non-existent. However, we held out hope that he would be the miracle case, as the leg of the trial he was picked for was a new branch. It consisted of 5 days of intensive chemotherapy in hospital, for 24 hours a day, alongside a daily dose of Lenvatinib for up to two years.
The first cycle was very traumatic as he reacted poorly to the chemo, and going forward he then required the highest dose of the medication to counteract this reaction. He was rarely out of hospital as it made him very poorly, and as he was prone to getting C-Diff, he spent a lot of his time in hospital being isolated because of the risks he posed to others on the ward. The trial ran for a total of 4 cycles, and after looking at his scans post-trial there seemed to be quite a positive difference in the size of his primary tumour. This meant we decided to continue with this same treatment process for another 4 cycles.
However after the 2nd of these cycles we noticed there was blood in his urine, which was from his body attacking his red blood cells. It was found that he also had an anomaly in his white blood cells too, so he was brought in for a lumbar puncture on 24th May 2024. This came back showing that he had developed acute myeloid leukaemia (AML) as a result of his Ewing Sarcoma treatment.
This is when we were told there was nothing else that could be done for him, other than ensuring he was comfortable, but we would only have weeks with him. We were booked to go away for the May half term to Bakewell, and the hospital did everything they could to ensure we got this time. It did mean Dad having to drive to and from the hospital in Nottingham for Oliver to have blood tests and blood and platelet transfusions over the bank holiday. For the rest of the week, nurses came out to us in Bakewell to take his bloods.
Oliver ended up needing blood and platelets every few days. When he was in for this on Wednesday 5th June after seeing his consultant, it was just me with him. I was taken into a quite room with his dad on the phone, and we were told that he was declining at a much faster rate than anticipated, and we were down to our last few days with him.
Over the next few days, we arranged for close family and friends to spend some time with him. We even organised a film night with his best friend on the Friday. We also set up a new PlayStation in his room, which made him very excited to wake up and play the next morning. Unfortunately, he had a very rough night, and on the morning of 8th June Oliver passed away in his bed with Mum by his side.
Oliver was happy, kind, funny, caring, stubborn, clever, athletic, well mannered, cheeky, creative, and incredibly competitive. When he was younger, he was obsessed with Thomas the Tank Engine and Lightning McQueen, and he was never seen without a toy of theirs. He then grew into Batman, the Marvel Superhero’s and Star Wars. He would often be found creating costumes and lightsabres out of cardboard boxes. He loved to play online games with his brother and friends, especially in lockdown when he couldn’t see them as easily. He loved a wide variety of sports and would pick them up and excel at them easily.
He was an active player in his Paviors rugby team from the age of 6, and Oliver and his team even made it through a tournament, meaning he got to play on the Leicester Tigers pitch. He had also not long joined a local football team for sports gateway, and was becoming a pretty advance player. Oliver completed almost all of the levels for swimming and again this was something he excelled at. When we went camping or went on family walks, if there were accessible trees, you could guarantee he would be climbing up them.
Oliver has always been determined to achieve things by himself. When he was learning to walk he refused to hold our hands as he wanted to do it for himself. This carried on throughout his life, evening during treatment he taught himself how to solve the 2 by 2, 3 by 3 and the 4 by 4 rubix cubes. He was also an incredibly talented artist, the logo actually is the product of his trip to Sheffield for his stem cell harvest of his favourite animal, the axolotl.
We have decided to set up The Oliver Shilton Fund as there have been multiple fundraising events that others have done for the children’s hospitals and Pasic charities who look after the children and their families on the ward, which we found to be essential for surviving through the treatment. But as treatment caused significant problems for Oliver, resulting in his passing, we feel we need to support research into Ewing Sarcoma. We want to make sure that the survival rates for children diagnosed in the future are better, as well as ensuring that the treatments are gentler on their still growing bodies.
We chose to set up The Oliver Shilton Fund with CCLG because of their research being targeted at childhood cancers, and we feel this is an especially compelling cause. Also, we were made aware that one of the consultants that worked on Oliver’s ward was involved with this charity, and therefore felt reassured that we have made the right choice.
We plan to organise an annual event in Oliver’s name to fundraise for his fund, alongside any smaller events through out the year. We plan to have this active for the foreseeable future.
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Text CCLGOLIVER to 70085 to donate £5.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for The Oliver Shilton Fund so that your donation is allocated to the correct fund.