Elias's Story

Elias story to diagnosis:

Elias had a fall and bumped the back of his head just after his 4th birthday. When Elias bumped his head his right eye went all droopy and he went all limp, the best way to describe it is he was like a newborn again and couldn't hold his head up.

A neighbour helped and an ambulance was called and we were sent to A+E. When we arrived at hospital they said that he is fine, he hasn't been sick in the 4 hours but within these 4 hours he started walking differently , he was wobbly and tripping over, they told me he probably just hurt his leg from the fall.

We were told they don't like doing CT scans on children due to radiation.

The next day I took Elias to the doctors as I still wasn't happy with what the hospital told me and wanted him looked at again as he was still wobbly on his feet. They again told me a similar thing to the hospital and said if it was anything serious he would be sick or show more signs by now as it had already been 24 hours.

As the next week went on I still didn't feel happy with what I was being told so again we went to the doctors. Elias had developed a different smile by this time and he couldn't smile the same, it was as if one side of his face was slightly paralysed. The doctor again told me that if it was a bleed on the brain or a brain tumour she would expect him to be wobbly consistently so she wasn't concerned as from what she seen of his walking he was 'fine'.

Into the second week of him bumping his head, Elias was carried out from nursery to me which never happens and was told that he was stumbling around again and they were worried with what they were seeing and told me to take him to A+E again, and history repeated itself and was told exactly the same thing again, 'he's fine, we don't like doing CT scans due to radiation, we don't feel like he needs one'.

As days went on Elias' walking just wasn't right, his smile was getting worse, he didn't like to play fight with his dad any more like he used to, he was extremely anxious and clingy.
We went for a walk on the Sunday before diagnosis and Elias has always been an amazing runner, complimented by many parents telling us how fast he was, but on this particular day Elias was trying to run around in the park and he just kept falling over and flying all over the place and instantly from then we didn't want to accept the answer of he's fine and wanted something done.

We took him back to hospital on the 15th April and told the nurses what we've been seeing and what elias has been like and we said to them we would like a scan done and to help us in finding out why he is like this and they agreed he needed to have a CT scan. Whilst waiting for Elias to have the scan I asked the nurse is this normal to happen from bumping his head and she just shook her head no, and all this time of me feeling like something just wasn't right, I knew from that answer it wasn't going to be good news.
Within an hour we had the news broke to us that Elias had a 'cyst/abnormality' on his brain, that cyst was in his brain stem and we needed to be transferred to Bristol Children's Hosptial for an MRI.

We got to Bristol late Monday night and Elias was down for his scan on the 16th April and that was when it was confirmed a brain tumour in his brain stem that is inoperable as it is deep in his brain.

Our whole world was shattered, I don't think anyone or anything can prepare you for what we were being told. There was so much anger, confusion, sadness just so many different emotions. Having to break the news to his loved ones was the hardest thing I could've done.

Elias received 13 rounds of radiotherapy and we're now looking into trials and other treatments that could possibly help shrink the tumour and give us much more time with him but we are in the unknown of what the future is holding for us🩵