Ellis is our smart and cheeky 5 year old boy with a heart of gold and a real zest for life. As a parent our most basic instinct is to keep our children safe and to protect them from harm. But when you hear those words “ your child has Cancer” at that moment your whole entire world falls apart. Suddenly in that instant you feel a complete sense of helplessness and an overwheming fear and dread when you realise that you can't fix this, it's completely out of your control. How then do you carry on regardless? Now I know you carry on because that’s the only option you have.

Ellis was just 3 years old when he was diagnosed with high risk stage 4 Neuroblastoma. A rare and aggressive cancer with just a 40 to 50 % chance of long term survival. Looking back perhaps the signs were there, staring us in the face long before he was eventually diagnosed. Ellis would regularly wake up during the night thrashing about and crying, sometimes three or four times in one night. As first time parents we assumed that he was having bad dreams and we'd spend hours comforting him back off to sleep. He would sweat profusely to the point of his pyjamas being dreanched the next morning. Never for one minute did we imagine it could be anything as serious as cancer. If only we’d been been more aware of the symptoms then maybe we would have taken him to be checked much sooner, before the cancer had reached stage 4. If only we'd been more assertive and not been sent away from A&E for the umpteenth time running with yet another type of antibiotics to try. If only, If only, If only. It wasn't until Ellis would struggle to walk and eventually would shuffle along on his bum to get about that we demanded that the doctors take this more seriously and do something more. Unfortunately by this time the cancer had already spread to other areas in his body and was even in his bone marrow.

We were transfered the very next morning from Broomfield to Great Ormond Street hospital, where Ellis had surgery to insert a central line directly into his main artery and within 48hrs Chemotherapy had begun.

The chemotherapy went on for months and it was so hard having to put our complete trust into the doctors and nurses on the ward.

Having to believe that the poison which was being pumped into his tiny little body, that we could clearly see was depleting everything in him, was being done to ultimately save his life.

There's a set treatment protocol that every child with neuroblastoma will follow that's designed to take around 18 months to complete. Some kids miraculously get through to the other side and reach remission, sadly the large majority won't. Unfortunately Ellis was one of the unlucky ones. The odds of relapse are incredibly high with neuroblastoma.

Despite the successful removal of 99.9% of his primary tumour from his abdomen.The stem cell harvest and the six week admission for high dose chemotherapy, Ellis relapsed.

I remember it like it was yesterday.

Ellis was looking so well, In fact he looked the best he had in months.Then came the afternoon of our video meeting with Ellis' consultant We were expecting to get the results of his mibg scan but to be honest we wasn't worried at all, he looked amazing so we were expecting good news. But......

I remember thinking that Ellis had been through all this and for what? He was back to where he started. No, In fact he was worse than when he started. How can this be fair?

Fast forward to now February 2023. Ellis has recenly finished his second trial.The first one at GOSH and the last at Southampton. It’s been a long, hard two years for us all, not least of all for Ellis. He’s been so brave, a real little trooper. Things that would in the early days cause him a major meltdown, he now takes in his stride.The weekly dressing changes, feeding peg clean and the regular MIBG and MRI scans. I guess its all just become so normal to him. He’s missed out on so much and all that he really wants is just to be a kid. We're on a rollercoaster of a journey with plenty of highs and lows. But at the same time it feels as though our life is stuck on pause and we're suspended in limbo while everyone else around us is just getting on with theirs. Some friends have faded into the background but others have come into our life or stepped up to the mark with encouragement and support. And for that we are blessed and truely grateful.

THANKYOU, YOU KNOW WHO YOU ARE X

We‘ve met some lovely people along the way. Caring nurses, kind charity workers and the other amazing children and families that are also fighting their own battles or have sadly lost theirs. Our heart goes out to each and every one of them ❤️

As for the trial, it helped…….a little. His hair has grown back and he’s even managed to put on some weight. Anyone looking on from the outside would say he looks well, and he does.

But the cancer’s still there, refusing to budge from his spine.

Ellis is waiting to start radiotherapy at UCLH within the next few weeks. He hasn’t had this treatment before so the consultant after discussing Ellis at the national panel feels that this is his best option. Apparently neuroblastoma is clever and cunning and quick to mutate. Building resistance to everything that’s thrown at it.

We need your help now more than ever. Treatment abroad is expensive and time is ticking. Please help us save our precious little boy❤️

There are so many ways you can get involved.You can follow his journey on social media. On Instagram @youngwildbrave

or on Facebook @supportingyoungwildbrave

We have some fundraising events coming up which we’ll advertise closer to the time but If you’d like to organise your own fundraising event, a coffee morning, dress down day or even a sponsored challenge. We would love to hear from you.

Thank you for taking the time to read this and we hope that you can support us in any way that you can. We can't do this alone and really do need your support.