Lucas’ story. News of his relapse turned everything upside down
In 2019, while on a trip to see family in Scotland Lucas had to go to hospital on Christmas Day as he was suffering with stomach pains. Then, a few weeks later, after a couple of visits to A&E, he was diagnosed with liver cancer.
After surgery and several rounds of treatment, Lucas went into remission but only a few months later a scan showed the cancer had returned and he would need a new course of treatment. He went on to have another surgery as well as chemotherapy and a stem cell transplant. He finished treatment just before Christmas 2021.
Lucas’ family were supported by Jeremy, a Young Lives vs Cancer social worker, who supported them with grants to help with the financial impact of cancer. His family say that without Jeremy, they would not have had a Christmas that year.
“He’d started complaining of a sore stomach in the lead up to Christmas and on Christmas eve we were in Scotland. He’d already been to the doctors at this point and they didn’t know what was wrong with him.
“On Christmas eve at about 11pm we ended up in A&E in Scotland, they couldn’t quite figure out what was wrong with him in A&E but they wanted us to come back and see the consultant the next day. They thought it was appendix maybe but it wasn’t that, blood tests showed.
“It was a bizarre Christmas so we were in there until about 4 in the morning, we came home slept and opened presents and he was alright opening his presents, he was a bit tired but we had to go back up to see the consultant so where I’d normally be having my first Christmas day beer and my bacon roll, I was sat there with a cup of tea watching rubbish on the TV.
“He was alright he was playing with toys. We were only in there a couple of hours and then got home – he had an alright Christmas day I don’t think it affected it too much – for me it wasn’t a nice Christmas day but at that point the consultant said ‘you should probably get that checked out when you get back home’. Still at this stage I was thinking ‘what on earth’s wrong with him’ not thinking that it was that – I thought burst appendix, twisted bowel or diabetes at one point.
“The cancer thing just never came into play. He had a strange reaction on his hand and foot – that’s where the diabetes thought came as he had a sore foot – diabetes runs in both of families, so we started to think it was that.
“We came back down South and then the first couple of weeks in January he was complaining about his sore stomach. We took him to A&E one day after school they didn’t know what was wrong with him they asked us to come and see the consultant the next day and they sent us home from A&E and told us to come back. Then after another two trips to A&E they discovered a tumour growing in his kidney. Our world turned upside down from there.
“They asked us to come to another room and sat us down – I’ve been in that room many times since and it always brings back bad memories. They sat us in the tearoom at the paediatric ward at Epsom and used the cancer word for real for the first time. Your world just turns upside down, it’s never something you expect. It’s not that you take your children’s health for granted but you might expect them to need their tonsils out or break a bone – it’s not that I didn’t think kids got cancer but it’s something you know of people you’ve heard of in middle age but it’s the first time for me that I’ve ever come across a child that had cancer so for it to be your own child, it was something pretty extreme.
“He would have just turned six. We used the cancer word, because you’re told to use it. We explained he’s ill, we explained he needed treatment but I don’t think he would have grasped the full implications and what he was facing and what it meant. But we definitely spoke about it. He’s quite switched on for his age, he knew he was ill, he needed to get treatment and he needed operations.
“He went and got his line in, he got a course of chemotherapy and he then got his kidney out and then we got the biopsy results. It started in January and he finished treatment the end of September. We thought that it was over, then to our utter devastation it came back.
“To have to go through this once was bad enough but to face it again I could not believe it. We’d had the all clear until June, we had a good run of it – I was very confident I wouldn’t say naïve but just positive and getting on. We completed it with the bell ringing then we had a couple of scans under our belt and it was all just very weird – we went for a scan and told that there was something that they need to check. She felt it might have just been scarring from the operation – he went for a CT scan and then they requested for another scan and that’s when I started to panic because I thought ‘this is what happened before’ and lo and behold it was his liver. Take two, your world falls apart again.
“At that time I’d started a new job, we’d bought a new house so we really thought we had new beginnings. That was us again, facing more treatment.
“He went straight in for an operation this time to cut out his liver and then he had more intense chemotherapy so this was week-long stints in hospital as opposed to just going in as an outpatient, he was an inpatient and then at the end of it he had four weeks of stem cell treatment and a real intense chemotherapy drug. It was a lot more difficult to manage for work and childcare and just more intense, he got more ill – and just more real for us as well, you’ve moved onto a new worry and strain, if that’s even possible.
“We had to work out time off of work and where my wife was in hospital I had to be available to pick my daughter up from school at 3pm as opposed to coming home at 5, 5:30 – I had to get away from work earlier. Luckily work was pretty understanding. It was easier for my wife to take time off but when she took time off she didn’t get paid. Sometimes we had to call in favours for people to pick my daughter up.
“All of this in the backdrop of moving into a new house, pay the bills and I think everyone knows when you move house it’s not cheap and then all of sudden you’re thinking are we going to be able to pay for this and everything snowballed into one. Obviously our biggest concern was Lucas but you’ve got all these other shoots – for me, it was trying to let my wife look after Lucas and for me to look after everything else in the background, it was a real tough time.
“I put everything in this house thinking we were through it all and then I thought ‘oh I’ve got this credit card bill that needs paying off and pay the washing machine next month’ and Ria’s pay is going to be about £100 because she’s had to take two weeks off and we’ve never been the best at saving to be honest – so it was a real struggle and it worried me. You don’t think about how much money you spend when you’re at hospital.
“The other difficult thing is when you come out of hospital – Lucas maybe comes out of hospital one Saturday and he spends a week recovering and then he’s recovered and he’s got a bit of energy and you want to do something as a family and you want to go to the cinema and it costs about £50 to go to the cinema and it becomes really difficult because you’ve got a child going through immensely difficult things and you want to treat them.
“He got out on the 22nd of December and that was his four-week stint as long as his numbers were ok he got out and we were getting closer and closer to Christmas day – he was about to get out on the 18/19th and then he spiked a temperature. At this point all we wanted was to be home for Christmas – I had time off and my mum and dad were down. We got out on the 22nd – we had a lovely Christmas.
“There was a scan in January and then we’ve had two scans since. He’s playing lots of football, he’s back in school no issues, building himself back up a little bit still. He’s probably exactly as you’d expect him to be at his age – at football four times a week, he’s just getting on with life.
“First time round we didn’t have as much dealings with CLIC Sargent at the time, we had a few conversations and they gave us a bit of advice. I think for us it was easier to manage first time round – we had a few chats but second time round we were assigned Jeremy and it was an absolute god send.
“In terms of financial advice he gave us about certain things was just a god send at times – I don’t think we would have had a Christmas without Jeremy that’s for sure. At Christmas time there were things he helped us do, in terms of advice to apply for grants and apply for discounts – he did a lot of phoning about and a lot of information sent. I think he understood our situation in the sense of we both had a job and both had a decent salary but he understood that the timing with the house and the fact we had outgoings we can’t just get rid of. We have two cars because we both need a car for work and you can’t get rid of your mobile phone at the drop of a hat and you can’t get rid of your Sky TV. I think he was understanding of that.
“He made us aware of a company that was coming with Christmas presents at one point and a couple of grants he applied for that just helped us put towards a better Christmas for the kids. Christmas is a hugely expensive time and the worst thing you want to do is have this mediocre Christmas after everything you’ve been through. You think it will be low on your priority list but actually it was really high on mine in terms of having a good Christmas, it felt like a significant time as he’d just finished his treatment.
“Equally, in the months after Christmas we had an issue of our roof, he helped with that to get a grant – my tiles blew off my roof and insurance wouldn’t pay out – he helped get a grant to put money towards. It wasn’t like the help stopped the day Lucas stopped treatment, probably up until June/July we were in reasonably regular contact. He understood the knock-on impact of everything – having to put stuff on credit cards and get through Christmas.
“The second time around would have been extremely difficult [without Young Lives vs Cancer] – I often think would I have found these myself, found ways to help myself? Probably not. I don’t think I’d have the energy or the know-how, particularly financially. I think Jeremy’s absolutely lovely, brilliant and is always there to support emotionally. I think I was alright at times emotionally but I think the stress of the finance stuff I don’t know where I would have been without that. It would have been a very different and more difficult experience, that I can say without a shadow of a doubt.”
Posted on Friday 16 December 2022