A 15-year-old boy was told it wasn’t certain he would survive after his annual scan was cancelled meaning a tumour had been left to grow in his brain.
The Aneurin Bevan University Health Board was forced to cancel Noah Herniman’s routine annual MRI scan due to pressures the health board was facing from the pandemic.
Months later Noah, who suffers from neurofibromatosis meaning tumours grow on his nerve tissues, was diagnosed with an inoperable benign tumour at the core of his brain.
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Noah, well-known in the area for his outstanding contribution to fundraising since he was a young child - particularly for Llamau and Women’s Aid, says he has been blown away by the reaction of his community in Chepstow who have rushed to help him and his family.
Remembering the day Noah was diagnosed with a brain tumour, Noah’s mum Shelley said: “We had a phone call in May saying they needed to see us and they told us on June 30 that they had found a shadow and it was an inoperable brain tumour. It was an absolute shocker. Nigel [Noah’s dad] wasn’t allowed in with us because we were only allowed two in due to Covid. In hindsight, had I have known what we were walking into, I’d have gone in with Nigel and we’d have told Noah.
“It felt so cruel. We had watched the football the night before and there were 40,000 in a stadium, yet the three of us couldn’t see the doctor to receive that news together.
“It was a real shock for the both of us and Noah didn’t really know how to digest it himself. He’s just amazing. He asked what treatment was available and she said ‘all we can do is chemotherapy’. He asked whether it would work and she obviously can’t commit to an answer. Then he asked if it would kill him. How do you not fall apart when your son asks a question like that?”
If Covid hadn't been a factor it is likely Noah would have been diagnosed with the brain tumour in 2020, and he would have started his treatment much earlier. He is now a few months into an 18-month chemotherapy cycle.
Benign tumours are not cancerous and they are not usually problematic. But they can be life-threatening when positioned so they press on vital nerves.
Due to where the tumour is in his brain, Noah cannot eat food properly as the stem of the brain controls the ability to swallow. He is now fed through a feed line.
Shelley said in hindsight he had been struggling to swallow since 2019, but signs it could be a tumour on the brain were missed. Remarkably Shelley does not blame anyone for the position her family now find themselves in.
“In 2020 everything was on hold and the scan wasn’t deemed urgent so he didn’t have it,” Shelley explained. “I had chatted with our GP, who is brilliant, about Noah’s gag issue - but a tumour never came up in conversation.
“Now, looking back, I think the signs were there. He was lethargic, he wasn’t eating well, but we put it down to him being at home [from school due to the pandemic].
“The heartbreaking thing for us is that now the damage could potentially be done. I have been so angry about that - but how can I blame anyone? There are thousands of people in our position due to the pandemic.
“I have been angry, trying to get my head around how if Noah had that scan in 2020 he could be well ahead with the treatment. Would we be in a better position had the lockdowns not happened? Yes, of course.
“In hindsight I wish we had pushed [for the scans earlier], but we accepted that it was part of Covid and I knew how bad it was in our hospitals. I’ve lost friends to Covid, my own sister works in a hospital locally as a nurse, my niece and nephew work in hospitals. I knew the pressures and I think that made me less pushy for the scan for Noah. Now we know that the scan could have been a game changer for us though.”
Shelley said they feel "blessed" Noah was being monitored annually.
“I dread to think what would have happened if that wasn’t the case,” she said. “We still don’t know what the outlook is.
“We know we’re not the only ones in this position and it is utterly heartbreaking. Noah hates having the chemo and how it makes him feel. He had a really bad week a couple of weeks ago and he was so sick. He said ‘I’m not doing this for me, I’m doing it for you and dad’. I’m sure thousands of kids feel exactly the same way and they are so remarkable. I’m seeing it so much in the Heath [hospital] and it is so hard.”
Despite undergoing such gruelling treatment Noah, who has raised tens of thousands for charity, has still managed to raise even more money this festive season for Women’s Aid. But Christmas has been an extremely difficult time for him and his family.
“It’s been really tough to be honest,” Shelley said. “We’re so used to him coming and sitting at the end of the bed on Christmas morning, but he was so exhausted. It all seems very surreal that this is happening to us.”
On Christmas Eve the neighbourhood surprised Noah and his family with a touching show of community spirit. Organised on Facebook by family friends after Shelley had mentioned she would miss her church visits this year, The Severn Tunnel brass band showed up on their front drive to play them some carols while neighbours and friends watched and sang.
Chepstow School organised a Doctor Who day for Noah too, raising more than £2,300 which was divided between the Brain Tumour Trust and Children In Need. Staff also knocked on the door just before Christmas bringing the family gifts and cards, and the community has set up a ‘Make Noah Smile’ campaign via JustGiving.
Noah and Shelley have set up a fundraiser of their own for the Childhood Tumour Trust which you can find and donate to here.
“Our community is exceptional,” Shelley added. “Chepstow School has been so fantastic on a whole different level. It has made Noah’s month. It’s so difficult for him to be sat at home with us when he is so outgoing.
“Their generosity has made such an impact on Noah, it’s so overwhelming. I don’t have the words to say how thankful we are.”
A spokesperson for the Aneurin Bevan University Health Board said: “All routine scans and procedures were postponed across the whole of the NHS at the beginning of the pandemic and sadly this has resulted in some delays with diagnosis. We are sorry to hear that Noah’s condition has deteriorated and our thoughts are with his family.”
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