Please pray & help Ellis fight Neuroblastoma

Hello my name is Chloe and I am married to Neil and we are blessed to have two beautiful children. Lily who is 4 and Ellis who is 23 months old. Below is our story so far, and by writing down every detail which has lead us to my baby boy’s diagnosis, I hope that it will help others to potentially recognise the symptoms of an awful cancer as early as possible. Ellis is 1 of 100 children in the UK every year to be diagnosed with Neuroblastoma which by its nature, is one of the hardest cancers to treat.

Ellis is the happiest, smiliest, kind, cuddly little boy and he is loved by everyone who meets him. His cheeky smile is infectious. He has the softest skin, the velvetiest hair and the most beautiful blue eyes. He loves his big sister and his big sister loves him. They have a special kind of bond and the ability to make each other smile. He has the sweetest little voice, and his favourite words are cuddle, Peppa and car.

On Tuesday 18th July 2023 our world collapsed around us as we were told our baby Ellis has a large tumour in his abdomen. I cannot describe the feeling of devastation, terror and shock at that moment in time. A feeling of pure heartbreak and desperation. I could hardly breathe.

Prior to this we had had several hospital admissions with Ellis for seizures that he was suffering, and his last episode was at the end of February 2023.

Ellis seemed to pick up every illness going throughout the last 23 months, however we put this down to a weakened immune system and the fact that he was in childcare twice a week being exposed to other children. He had also suffered from reflux since birth and because of his issues, he was already under consultant care. This is something I still find incredibly hard to acknowledge. For months, I fear that this diagnosis may have been missed along the way.

On the 7th July we were called by Ellis’s childminder to collect him as he had developed a temperature and had been sick. This was very common for Ellis as he has had many fevers before.

Due to his seizure history, I took him to A&E on the 9th July where he had several bloods taken and we were told the results were fine and that he had a viral infection.

Ellis continued to spike temperatures over the next week. I took him back to the doctors twice during that week and both times they could find no cause and again said this was probably viral.

At this point, Ellis had gone off his food (which is highly unusual as he loves his food!) and had begun sleeping very poorly, often waking in the night seemingly in pain. We thought he was teething or perhaps suffering with some separation anxiety, all the things you usually associate with developmental milestones.

Ellis seemed more tired than usual, and we put this down to his restless nights. We had also been told that he was slightly anaemic - something very common in toddlers and which can make you lethargic.

Ellis’ lovely childminder was also looking into why he may be under the weather and mentioned to me that he had quite a firm tummy on the left side and we thought constipation would most likely be the cause. Bearing this information in mind, I looked at Ellis’ little pot belly that evening after a bath and noticed from behind that he had a very slight bulge on his left hand side. This would have barely been noticeable if I hadn’t been specifically looking at his tummy.

I couldn’t sleep that night and had a feeling I needed to take Ellis back to the hospital and that is when our nightmare began on the morning of the 18th July.

“Constipation” said the first doctor, however after speaking with a superior, they advised that Ellis should have an X-ray of his tummy.

The X-ray came back and they confirm Ellis is extremely constipated but there is also a shadow and it isn’t clear what it is. It could simply be some more poo showing up, but just to be on the safe side they decided to do an ultrasound.

The radiographer was a nice man who said ‘Let’s find out what’s happening with your tummy young man’. At the end of the scan I asked if everything was ok as I was expecting a reassuring comment from the radiographer.

He looked at me with a degree of sympathy and said there is something unusual on the left kidney but please give me time to analyse the images. I knew in this instant it was bad news. I called my husband Neil and asked him to come to the hospital as soon as he could.

I took my baby boy back up to the ward where we had now been admitted and sat there shaking waiting for the news to hit us. Two Doctors came into the room shortly after and asked our names. I could see from their expressions that this wasn’t going to be good news. “We are sorry but we believe Ellis has a large tumour on his left kidney”.

At this moment in time, our whole world collapsed, and they believed this could be a Wilms tumour. Any cancer is a devastating diagnosis but in this case Wilms tumours do have a good prognosis and although we were utterly crushed, we could take comfort in that hope.

Unfortunately, things continued to get worse for us. Ellis then had a CT scan, and it was reported that this actually looked like a very large neuroblastoma and not a Wilms tumour as initially first thought.

The agony and desperation of waiting for answers, when finally a couple of days later, we managed to see a consultant at the Royal Marsden. Ellis would need a biopsy, a central line fitted to begin chemo and a bone marrow biopsy as neuroblastoma can attack the bones once spread.

Being in the Marsden, I felt a sense of guilt that there is a whole different universe just around the corner. A little girl came walking out as we were walking in, wearing her pretty dress and her little tufts of hair, being the only hair left on her head which had been ravaged by chemotherapy. My heart broke again, for Ellis, for the little girl, for every single person we saw going through this ordeal.

We were then moved across to St George’s where Ellis had to go through the painstaking process of biopsy’s from the tumour, bone marrow and installation of his line for chemo. A 3 hour surgery in total. Signing his consent forms and consenting for blood transfusions should he need it, gave light to the magnitude of the situation. Many tears were had in front of the consultants. “Please just help our baby” I said.

The following day was so difficult to see Ellis in pain, he doesn’t understand why, he doesn’t deserve any of this. His blood levels declined and he then required a blood transfusion.

More scans and trauma for us all and on Friday 28th July he finally received a firm diagnosis. This tumour is indeed a neuroblastoma, stage 4, high risk with a 44% chance of cure. The statistics crush me. To know that there is a higher chance that Ellis won’t recover. It’s unthinkable. The treatment protocol is aggressive and consists of brutal chemo, surgery, chemo, radiotherapy and immunotherapy- a yearlong program. We are due to start chemo next week at the Marsden and in the interim Ellis needs more scans and is currently being fed via a tube.

I’ve always been a mummy, but overnight I’ve become a full-time mummy and medical carer. We are aware that we have a long road ahead and nothing about this journey is going to be easy. During this period, I want to dedicate enough time to research alternative treatments that could become available should Ellis relapse or not respond to his initial treatment and to also look at medicines that will help him along to be more comfortable throughout his journey. There is currently a vaccine programme in New York which has some promising data, although this is only for children once in remission from neuroblastoma, it gives us the hope we need. The cost of this is in excess of £250,000. This go fund me page will contribute towards his care should he reach remission and to relieve the financial burden of now only having one parent working with bills and life continuing to go on all around us. Any surplus donations will be donated back to the neuroblastoma charity to fund further research.

All the while, I’m still a Mummy to a little girl who needs me, and I’m trying to keep family life as normal as we can for as long as we can. I will do anything in my power to keep us as a family of 4 and I just can’t imagine a future without our little man. Please donate anything you can to help us help Ellis and to keep the four of us together.

Please can I ask that any donations made, are made anonymously and that if you are unable to donate, please simply share our story as far and wide as possible.

Follow Ellis’ story on Instagram- chloeingreyspmu

Thank you from the bottom of my heart