Young Crystal Palace fan Charlie Ellacott passed away 5 years after being diagnosed with Cancer. His dad Jon has written a loving tribute which explains how Charlie dealt with his illness and why he inspired so many people especially those within the Palace family.
I'm writing this 24 hours after my son Charlie Dennis Ellacott passed away from cancer at the age of 15.
Charlie, in his own words, was "Epic".
By that he meant he didn't do things by half, as he was on the Autism spectrum, along with having ADHD and ODD (Objective Defiance Disorder).
So for a child with those conditions to be told that he had a Sarcoma tumour wrapped round his spine and pressing on his spinal cord, it makes his determination and fight over the past 5 years even more remarkable.
He was diagnosed with a rare form of Sarcoma tumour in February 2018 after we noticed what looked like a cyst on his spine. When he was given an MRI it showed that the tumour had wrapped itself around his spine and was compressing his spinal cord. He underwent a 14 hour operation, which started at 7pm and went on through the night. They had to remove part of his spine and a few ribs just to be able to get to the tumour. They managed to remove it, within the fine margins but they were concerned he would never walk again. Rods were then inserted in his back to replace part of the spine they had removed.
Charlie was placed on a fat free diet during Easter and ended up on Nasogastric (NG) tube feeding. He spent until April 2018 in RNOH Stanmore until he was transferred to University College London Hospital (UCLH).
Charlie was determined from the start even though he struggled with having to do things he didn't want to do (that's the ODD kicking in). But he did them as long as everyone explained why they were doing it and as long as it was to a strict routine.
While at UCLH he began to start to walk again. Despite the pain, despite the upset, he was determined to fight. Although Charlie spent most of the next five years in his wheelchair, that was mainly for security, as he was always very worried about his back.
The next 4 months were spent building up his legs by using a walking frame and trying to push his limits, despite the pain and anguish it was causing. Sometimes this lead to some tantrums and anger. There was a concern over his back though as the skin on his back was so thin. He'd been given 30 days of radiotherapy and a session of chemo while in UCLH and there was worry his skin was breaking down due to these treatments.
By August 2018 Charlie was back home but the concerns over his back and his skin were finally realised and he was rushed back in to RNOH. Here he would have another operation for a skin graft and new rods were put in because the others had become exposed to the air.
This led to him having to wear a full torso plaster cast. Again he wouldn't be defeated. He would walk around the ward with his walking frame despite the plaster cast weighing him down.
At this point we realised Charlie wasn't going down without a fight. He was determined to beat this disease and he wasn't going to let it get him down. He wanted to be home with his siblings. Charlie spent his birthday that year in hospital. He was eventually released in October 2018 when the cast was removed.
By 2019 we thought he'd beaten it. There was no reoccurrence and everything was positive. Charlie had spent Christmas in hospital due to a feeding line infection but it looked like things were improving.
After a routine MRI scan midway through April 2019 though they found that Charlie had a secondary tumour. It was on his left lung.
This led to concerns about the disease as it had spread from his spine and the muscle to his lung.
Charlie would go on to have an operation in The Royal Brompton Hospital, where he would stay for a few days. Again surprising doctors with his determination and spirit.
He was in ICU for 48 hours, transferred to the ward where he spent another 24 hours before coming home.
The operation was successful and the tumour removed.
Our consultant at UCLH decided to put him on Etoposide, a chemotherapy medication, in June 2019. He was to continue on this medication until around the end of August 2021 and it seemed to keep the disease at bay. There were tumours appearing but they were small and insignificant and no cause for concern at that point.
After another MRI and routine CT Scan they found another tumour that was growing slowly but they were concerned by its growth. With secondary tumours there is always the fear that the disease is out of control and that the cancer is incurable.
By September 2021 their fears were confirmed. The tumour was growing and while at a slow rate it wasn't like the other small tumours that had appeared. The cancer was out of control and the Etoposide treatment was stopped. We were told we could try a couple of other treatments but they might not work.
They didn't think Charlie would last past February 2022. We had a holiday booked in the New Forest through a charity and he was determined AGAIN to defy the odds and make that holiday.
We continued with various different treatments and some compassionate medications but none were really working but they did slow everything down.
Charlie managed to get to Selhurst Park in December 2021 for the game against Southampton. This was thanks to the kindness of some Crystal Palace fans getting in touch with former Palace players Mark Bright and Gavin Nebbling as well as the Club.
Charlie then made it through to February, defying all expectations, but the cancer was still growing and the meds weren't doing much.
By October 2022 our consultant decided to try treatment that would not prolong his life but would work to keep him comfortable. This involved more chemo and more operations.
So more evasive operations at The Royal Brompton followed where Charlie would have a Bronchostomy to remove parts of the tumour and stents were placed in his airways.
During the installation of the stents they made the discovery that the airway to one lung was around 70% closed and the other was fully closed.
This surprised doctors as his saturation levels were fine. His oxygen intake, somehow, was no lower than 96%.
His body was working hard to breathe but he was truly defying the odds at this point.
His breathing was certainly bad, but it didn't feel as bad as the investigation had made it sound.
Each month, until around January 2023, Charlie went to The Royal Brompton to have operations to remove pieces of tumour to open his airways. He also had chemotherapy at UCLH to try and slow down any growth.
Charlie was growing weaker and weaker with each op and became ill. It was decided, after he became too ill and weak, that the chemo and operations were just too much to take.
On the 20th February 2023 our consultant at UCLH said that Charlie was so weak he had only weeks to live. She obviously had no timelines but in her experience of such tumours it would be very quick.
By the beginning of March Charlie was rushed to Croydon University Hospital. Struggling for breath he was admitted. He would spend his final days in Croydon University Hospital in an Oncology Room on the Rainbow Children's Ward.
He finally passed on the 20th March 2023, just before 6pm.
Charlie showed such strength, such fight and such determination to fight such a cruel disease but in the end it was just too much.
He defied the odds by learning to walk again.
He lived for longer than even the doctors expected.
He is and always will be my little warrior, my champion and my super hero.
The outpouring of love and support from people on Social Media has proved to me just how much he inspired people.
We, as a family are just glad, and proud, to call him a son, a brother, a grandchild.
He will be greatly missed by myself, Sarah, Rae, Matthew and Owen. It hurts right now but we know in the weeks, months and years to come, we can look back on his short life with such fondness and happiness.
Throughout everything he would still laugh and make jokes about his condition but most of all he fought with such determination and always with a smile on his face and a glint in those beautiful blue eyes of his.
We love you buddy and we always will.
And you were right...... you were Epic!
If you would like to help a Gofundme page has been set up here ( https://t.co/B5QGwy4SrE ) to raise funds to help with the funeral costs or if you would like to donate in Charlie's name, there are a few charities that have truly helped the family in the last 5 yrs and are close to their hearts:
Cancer Research UK ( https://www.cancerresearchuk.org/ )
Young Lives Versus Cancer ( https://www.younglivesvscancer.org.uk/ )