Ethan’s story: from playing on the beach to cancer diagnosis

When Ethan was having trouble with his sight in May last year his parents initially thought it was because he had been on his tablet a lot while on holiday for the weekend. However, he was still having trouble a couple of days later so that’s when they decided to see the doctor.

By the following morning, after an A&E trip, CT scan, ambulance ride to Bristol and MRI scan, Ethan was diagnosed with a tumour on his brain stem. His family were told he had nine months to live and sadly, Ethan died on 27^th November last year.

After losing her son, Mum Kim is now feeling nervous about sending her daughter Kira back to school this September.

“It was the end of May bank holiday last year, 2019, we spent most of the time on the beach with my brother and family. He was running round and everything was fine. Then, on the Sunday evening we noticed he had cross-eyed vision and a bit of a squint. So, we did the pencil test and it didn’t improve. Me and my Husband thought ‘oh it’s probably too much time on the tablet on the holiday’.

“Then on the Monday I’d gone to work and so had my husband, and he was with my mum and dad – they were doing childcare for us because they had an inset day at school. When I came home, my mum mentioned it to me and I said ‘yeah I’m aware of it’ but when someone else mentioned it, it made me more aware of it.

“On the Tuesday morning my husband left for work and I got both Ethan and Kira, our daughter, ready for school, they went to school and I went to work. That morning I’d actually phoned to try and get an appointment with a doctor, I was unable to get a doctor’s appointment straight away, it’s a telephone appointment system so they phone you back and scroll through a few questions. I phoned the school and informed them, just in case he couldn’t see or didn’t seem to be paying as much attention as normal. I told them there was something wrong with his eye and we were looking into it and I didn’t want him being put behind for something that wasn’t his fault.

“About 3pm that afternoon I got a phone call back from the doctors. I explained everything and she was really amazing, she said I want you to take him down to West Cornwall Accident and Emergency.

“Me and my husband both work in Penzance so I spoke to my boss and she was like ‘go now’. I left work, drove over to my husband and I said ‘look, we need to go’ so we both left work, drove home, which is seven miles in the opposite direction. We collected Ethan and then we drove back into Penzance. Both of our companies have been such a help to us.

“We went to the hospital. He had his obs all checked and they were all fine. The consultant came through, he did a thorough check on him on his walk-in, looked at his notes a few times and after about an hour and a half he came back and told us you have to go to Treliske which is our main hospital in Cornwall. He said ‘there’s a bed waiting for you, I can’t tell you what’s wrong because I’m not 100% but you need to go’. So, he obviously found something.

“We then drove back home to get an overnight bag because we knew we’d be in overnight and to obviously make sure my daughter was looked after by my parents. We drove up to Truro, and we got admitted to a ward and he had all his observations and he was being checked every hour. They gave him some calpol on arrival to help any temperatures and at about 11pm my husband left me to go home and myself and Ethan stayed, Ethan was sleeping.

“At about 1am, the team came round and said we’ve managed to get the CT scanner open for you, we want him to go and have a CT scan now. So, we woke him up and took him down in a wheelchair because obviously he was half asleep. Then, at about 2am, after we’d gone back up on the ward, the team came to me and said ‘we need to speak to you’. We left Ethan, a nurse sat with him while he was sleeping.

“I went into this room and she said Ethan’s got a tumour. At that point my world crashed around me, I could feel myself shaking, I was hot, I thought I was going to pass out, I wanted to vomit. And she said ‘you need to make some phone calls, because you’re going to have to go to Bristol’. At this point I was by myself, in a hospital with my son that was well literally hours before had been running around playing at school and all of a sudden I’m being told he’s got a tumour, it was just destroying.

“I made the phone call to James. I said ‘Ethan’s got a tumour, we’ve got to go to Bristol’. He packed another overnight bag for himself and Kira, a few bits for myself and Ethan. He came back to Treliske about 5am, we had to phone our parents and explain the situation to them. He came back, Ethan was very sleepy, he had to have a cannula fitted and they were doing medicine through his cannula. At 7am the next day the team arrived with an actual oncology specialist, and they explained to us that once we got to Bristol they’d be able to tell us more because he needed an MRI scan, because the CT scan had picked something up but they couldn’t be 100% what it was. We were like ‘ok fine but how do we get to Bristol?’ and they were on about air-lifting us but because of the proper Cornish weather it wasn’t very nice so Ethan and I were taken in an ambulance up to Bristol, and James and Kira followed.

“On arrival at Bristol, again, it was just like a whirlwind, straight in for an MRI. The MRI showed that he had a tumour on his brain stem and again when we were told this, our world fell apart, it was just completely destroying. Then they said they had to biopsy it. At this point we were told they believed it was DIPG and they told us his chance of survival, and well there’s no chance of survival and estimated survival time is nine months. And at that point it’s completely shocking.

“Kira, Ethan’s sister, was looking after Ethan with a nurse at the time when me and James got told and we had to go back to them, put on a happy face as you do. Ethan knew he had a tumour and Kira knew he had a tumour, they both knew it was cancerous and they both knew we were doing everything we could to do this and radiotherapy was really going to help his tumour – we knew it probably wasn’t true but you have to make the best out of a worse situation.

“We were in Bristol for about four, five days and we were allowed to come home on the weekend and leave before the biopsy was booked on the Monday. So when we came home that weekend, CLIC Sargent had been in contact by telephone. We’d been in contact with Karen who was our liaison team down here and she wanted to obviously have a meeting. At that point we was on our way back to Bristol, when we went back to Bristol for our biopsy we were told about CLIC House and things like that but before they actually knew what they were dealing with we couldn’t use CLIC House because we were not sure exactly what it is. We were like ‘that’s fine’, no-one knew what we were dealing with.

“So we came home and we had about four or five days at home and Karen actually came out to meet us and she was amazing, she was so full of information, the amount of books she brought out to read for my daughter. We arranged to do visits for the school because both the children were at different schools, we took her out of school during Ethan’s radiotherapy. Karen’s always been there by the phone or email, no matter what time of day as well, she spoke to my parents about Ethan. Sometimes it’s easier to speak to someone else.

“We then got back to Bristol, we had to be back for Monday because once we got the diagnosis we could use CLIC House. We met Ann and she was so amazing, it was literally home from home and without that we were spending a fortune on Premier Inns so we could all just stay together. I’d stay in the hospital with Ethan overnight and Kira and James would have to stay somewhere else but just knowing when we were all there if we needed to stay overnight in the hospital, we had the home there.

“Paying Premier Inn prices every night it could be £100 a night. When he was on radiotherapy and we got told it was for six weeks it was a god send to have CLIC House there, it was amazing. We were able to cook our own meals, we had our own cupboards and our own fridge space.

“The kids became friends with other children in the home, watching TV, being able to relax a lot more than you would if you were in a Premier Inn. The children loved the garden because of all the toys and swings. The whole staff were literally brilliant. If I took Kira out and James needed to pop to the loo there was someone there to watch Ethan for five seconds, they were so helpful. And just having those people there to talk to, we became friends with these people that will always be part of our lives now. I’m friends with them on Facebook and things like that. And when we lost Ethan as well it was kind of like it was just having them there to support me.

“When we got home, after radiotherapy, we decided we did need to tell Kira the full extent of Ethan’s diagnosis. She was 13 and she had the potential to find out if she googled and there’d be a lot more questions. So, I went upstairs and I sat on her bed and when I told Kira the extent of it obviously I was breaking my heart sobbing and so was she. In 2015 we lost my sister to cancer so obviously having to tell Kira again that Ethan had cancer which she knew already but the chances of his survival was only nine months.

“She broke her heart and then James came upstairs just to make sure we were both ok and I said we can’t tell your brother, I said you’ve got to keep this to yourself but these are the people who know; and I gave her a list of the people who knew obviously grandparents, aunties and uncles, our best friends and I said now they’re going to sit down and tell their children so you are going to have that support there from this network of people. She was amazing, she’d read to Ethan while he was having radiotherapy everyday. They were typical brother and sister, there were occasional squabbles but they were inseparable.

“In October/November last year Ethan started taking a turn for the worst and I contacted Karen straight away – to know that I’ve got someone there 24/7 was absolutely amazing, to make these phone calls and go ‘he’s vomiting, what do I do? He’s not stopped’ and then just having someone saying ‘this is what you need to do’ it’s just so reassuring because without them I don’t know what we would have done.

“On my last visit to Treliske when Ethan had been vomiting most of the night and we took him in. James had left because of Kira and I stayed overnight with him. That morning when I went to wake him he was unresponsive and he started to have seizures, it was a Sunday morning and I was like ‘oh my god what will I do I’m here in Treliske by myself’ obviously I’ve got the full team behind me but I’ve got no one I can talk to and then all of a sudden Karen appeared at the door. She knew how serious it was, same as I did, but just to know she was there at that point and pointing us in the right direction of what we needed to do, it was amazing.

“Ethan was then moved to a hospice. His sister Kira was with us throughout everything, she was at the hospice with us in his final stage. She was in the room when he passed away but she was asleep. I was laying on the bed with him and I just knew he’d gone and I woke James up, we called a nurse in and we left Kira sleeping obviously while they did their checks and then we woke her. It was soul destroying, not only had we lost our son, she’d lost her brother, it was her only sibling and going from a four family to a three family, everything we do has always been centred around the kids.

“Karen came to visit when we lost Ethan in the hospice on that very day. I can’t thank her enough. She’s visited since then, she’s phoned me since, we’ve emailed each other but at the moment because of covid we’ve been unable to actually have a face to face meeting but like I say we can’t thank her enough for everything she has done.

“I think with some people once you’ve had something like this, they tend to leave you and you never have that support again but we still know we have that support it’s only by email at the moment or text messaging but I know that support’s there.

“I went back to work in January because I took six months off to look after Ethan. So I was just getting back to normal, Kira was back at school full time and then obviously we get hit by lockdown and it’s like ‘what do we do?’ because you’ve lost that support. Having support over the phone isn’t the same as having that support face to face, it’s just difficult but like I say I know if I need anything I can text Karen or email Karen and she’ll help me.

“When you’re so used to having four of you it’s hard. I spent six months at home with Ethan looking after him so it was just me and him the majority of the time while James was at work and Kira was at school while she could. So, now being at home and it’s the three of us it is hard because there’s a vital piece missing. But somehow you’ve got to carry on and make the most of what you’ve got.

“Kira’s due back to school in September and she’ll go to Year 10 but even if she was to go back now I couldn’t send her back at the moment. I’ve already lost one child all I keep thinking is I could lose another. No-one knows what’s around the corner, in the space of 48 hours we went from Ethan playing with his mates on the beach, running round the green where we live to being told he’s got cancer and he’s got nine months to live.

“I know she’s missing her friends, and we’re all missing our friends but her safety is paramount to me now, I don’t let her out of my sight, she’s 14 and she’s still stuck with me but that’s what I need, without her I don’t know where we’d be. We’ve got our different ways of coping.”