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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Arnold Chappin

At just 13 years old Arnold Chappin, known as ‘Arnie’ to his family, was given the devastating news he had a brainstem glioma. The ‘loving and affectionate’ boy, from Dunstable, Bedfordshire, only started experiencing symptoms including disorientation and slurred speech in June 2023. Within a few weeks the tumour was discovered. Unbelievably, his parents Ruth and Brett were told there was little treatment available, and Arnie had less than a year to live. The family started fundraising to enable his parents to temporarily give up work and spend precious time with Arnie. They raised almost £100,000 in less than a week.

Here is Arnold’s story, as told by his uncle Samuel Icke…

My nephew Arnie is such a loving and affectionate boy who is hilarious and full of life. His mum, Ruth, is my sister and as a family we’re all really close. Despite them living in Dunstable and the rest of the family being around Manchester, we see each other a lot. Arnie has ADHD, so he does a lot of quirky things, and looking back on everything now we’ve all questioned whether that masked any earlier signs of his brain tumour.

“Early in June 2023, we started to notice his speech was a bit slurred and seemed to deteriorate a bit.”

Arnie often talks really fast, or mumbles so we didn’t think it was particularly worrying. Then, over the first two weeks of the month he stated limping a bit. He’s very clumsy though and is always falling over. It’s become a joke over the years, and now he often throws himself on the floor to be silly and make us laugh. We wondered if this limp might have been from a previous injury where he’d fallen over, but that had got better, so seeing the limp return was strange. 

We tried to talk to him about it but because of his ADHD it can be hard at times to get him to really communicate what was going on. He was spending more time with me and my husband, Keyvan Fani, and we noticed the falling over was becoming more and more of an issue.

He’d just started new ADHD medication and was being sick and feeling anxious in the morning so we put all this strange behaviour down to that. But then, on the weekend of 10 June, he got up and couldn’t put his socks and shoes on.

“We knew he wasn’t joking about, he was getting overwhelmed and then started crying.”

We told him not to panic, and just to put his sliders on, but he even struggled with that. That’s when we knew something was really not right.

Ruth took him to the doctor’s first thing on the following Monday. He asked Arnie to do a few coordination tests, like touch his nose, but he couldn’t do it. He had a real weakness on left hand side. The doctor referred him to Luton & Dunstable University Hospital where a CT scan revealed a mass on his brain, about 4cm x 4cm.

The doctors couldn’t tell us much at that point; they didn’t know what they were dealing with, so they referred Arnie to Addenbrooke’s Hospital in Cambridge to find out more.

As Ruth and Arnie’s dad Brett were getting into the ambulance to go, a nurse slipped a letter to Ruth about cancerous tumours.

“It was the first we’d heard of this potentially being cancer; the hospital didn’t speak to us about that at all, and it was a really scary way to suddenly receive that information.”

When Arnie got to Addenbrooke’s he had further tests and an MRI, and on Wednesday June 14, Ruth and Brett were told he had a brainstem glioma. We didn’t know what that meant, but were told it was inoperable because of its positioning, and unusual because it usually occurs in younger children. Then they said it carried a prognosis of about six to nine months, maybe a year with radiotherapy.

“It was a complete shock, and to be honest we’ve all taken it incredibly badly. It feels like an impossible thing to accept in somebody so young.”

Initially we weren’t open with Arnie; we didn’t know what to do, or what the best option was. But after a few days, Ruth had to sit him down and speak to him. He had a lot of questions and he knew we weren’t being open. Kids are intuitive and he knew there was a lot we weren’t saying. So in the end she told him everything, including his prognosis.

“It was the worst experience of my sister’s life. They were both crying together.”

He was so upset and is really angry about it all, but he still says things like how he feels blessed to have all his family around him. He’s agitated and anxious, but he is such a loving kid that he’s actually worried about us; the whole family has taken this really hard but he’s the one telling us not to worry about him.

“For a 13-year-old to be that brave is incredible.”

Personally, I try to block it all out. It doesn’t sound very healthy but I find if I think about it too much it just feels unbearable. It’s terrifying to think of what’s to come and we’re just trying to take it day to day. My sister keeps breaking down, but she does manage to keep it together in front of Arnie and be strong for him.

It’s so hard for his brothers and sisters too; Ivan, three, Henry, 15, Stella, 18, and George, 20. We want them to be open and talk about how they are feeling, but sometimes you just don’t want to talk. We all feel quite numb to it all. Henry being just two years older is Arnie’s best friend. They do everything together and have a lot of the same friends, so it’s particularly difficult for him to come to terms with.

Arnie was due to have a biopsy on Tuesday 20 June, but one of the surgeons spoke to Ruth and seemed try to put her off it. He basically said it might be pointless and there were risks, like a 5% chance it could cause damage and give him stroke-like symptoms. But another specialist really pushed for a biopsy, and said it was important to analyse exactly what kind of cancer they were dealing with, so in the end that went ahead on Friday 23 June. 

While we waited for the results, we were already noticing a deterioration in Arnie’s speech and walking. He now can’t go to the bathroom by himself and he’s sleeping a lot during the day, and vomiting.

When the results came back we were told there is nothing they could offer except radiation; the prognosis is really stark. We looked into proton beam therapy, and there was talk about possibly paying privately for a clinical trial drug called ONC201 but we’ve been told Arnie is not a suitable candidate and neither treatment was likely to make much difference to prolonging his life.

“It’s put real panic in us all that we need to do things with Arnie quickly - while we still can.”

Ruth and Brett need to be with Arnold right now, but being self-employed will struggle to stay financially stable. The financial burden they face is immense, as they also have a family of seven to support with their four children and a grandchild all living together.

“We set up a Go Fund Me page in case anybody felt they wanted to donate and support them, and were left completely overwhelmed that within in a week we raised almost £100,000.”

That money is going towards renting the family a house up in Manchester. Ruth and I have a brother, two sisters and our mum all in the area. We want to bring Ruth, Brett and the kids up here and close by so we can step in, pull together and support them day to day.

We would also love to organise fun things for Arnie, but it’s difficult at the moment, while we await results and next steps. I know he wants to have a go at the longest zip line in Europe, which is in Wales, and we’d love to take him on day trips, and little breaks to the Lake District and places. But we have to be led by the doctors and think carefully about the experiences we choose so it’s not adding extra stress or strain to what is already an unbearable situation.

It's unbelievable how little money goes on brain tumour research. My dad, Arnie’s grandad, had a cancerous brain tumour when he was 18 and almost died. He was given a few weeks to live, but miraculously he came through it. It left him with other problems and side effects though; including memory issues, burns on his brain from the radiotherapy, stroke-like symptoms and early onset dementia.

“Here we are again, decades later, and the treatment options have not changed to help Arnie.”

This is killing more people under 40 than any other cancer, yet there’s been developments in other cancers, but brain tumours are not being prioritised. We’ve been wondering about a possible genetic link too, but again, nobody has any answers for us. It’s incredibly frustrating and so more research is needed.

Samuel Icke
July 2023

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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Together we will find a cure.