Posted on Friday 6 November 2020

Lucas’ Story: “I asked what the chances were of it being benign, but they said 0.01%. It was all such a shock”

When Lucas was three years old his mum went back and forth to the doctors with him because he kept getting high temperatures, and they kept saying it was tonsillitis or a virus.  In the January Lucas fell down two steps and he hurt himself doing that. When his dad took him to rugby tots a few days later, he noticed Lucas really wasn’t himself. Whilst staying at his Nanna’s that night she noticed his temperature was really high, and that he had a bulge on his side which felt rock hard. She rang Lucas’ mum and dad, and they took him straight to A&E in Stoke.  Within days he was diagnosed with cancer, they were told it was either Wilms Tumour, or Neuroblastoma, and that they would be going to Birmingham Children’s Hospital that night. Here mum Katie shares their story:

When Lucas was three years old, I had been going back and forth to the doctors with him because he kept getting high temperatures, and they kept saying it was tonsillitis or a virus.  In the January Lucas fell down two steps at my nans, and he hurt himself doing that. A few days later, his uncle picked him up and Lucas screamed, they thought it was probably because he’d hurt himself a few days earlier. His dad took him to rugby tots the next day, and noticed he really wasn’t himself, he was very lethargic, and he didn’t want to do anything. He stopped at his Nanna’s that night, and she noticed his temperature was really high, and that he’d got a bulge on his side which felt rock hard. She rang us, and we took him straight to A&E in Stoke.

They took us through to the children’s assessment area. We actually heard from behind the curtain someone say ‘can we get Lucas’ bloods back ASAP because we’ve found a mass’. Which as you can imagine was awful to hear. I was with my husband but he ended up having to go home, leaving me and Lucas there. It was snowing that night, and he had to drive home, worrying about what we’d heard, in the snow. It was about 2am by the time they go us on a ward. The doctors came to me at about 4am and said they’d found an infection, which was a relief, but the next day they did an ultrasound and realised it wasn’t a normal infection. They didn’t tell me at this point what they were looking for, they just said they were looking at his kidney.

He went for the MRI on the Monday. They came back with the results and said it’s definitely cancerous. I asked what the chances were of it being benign, but they said 0.01%.  It was all such a shock. We were told we’d be going down to Birmingham that night, to the Birmingham Children’s Hospital.

When we arrived at Birmingham Lucas had to go for a biopsy to see what kind of cancer it was, there was two options, it could either be Wilms Tumour, or Neuroblastoma. At the same time they put his central line in, because they knew he’d need treatment. They told us the measurements of the tumour. It was 15 cm, it was big. It had butterflied his kidney. It was hard for him having in the wiggleys (central line), it was hard at bath times because he couldn’t understand that.

Once we knew it was Wilms Tumour they said we’d need to shrink it first because of how big it is, so he had three to four weeks’ worth of chemo to shrink it. It shrunk to 9cm, so they were pleased about that, they said it had reacted well. Lucas then had the tumour removed along with his kidney and radiotherapy.

After that he had six months of Actinomycin D and vincristine chemotherapy, they called that an initial clean-up. The Vincristine effected his walking so we saw a specialist about that. He was a late walker anyway, he didn’t walk until he was about 18 months, so he hadn’t actually been walking that long before he got ill. So to be hit with something that effects your feet, it wasn’t brilliant. So they helped us with that. He lost a bit of his hair, but not fully, it just want fluffy. It came back all curly.

We went for the end of treatment scan in the September/October time, everything had so far gone well. We were getting all excited for the scan, we were planning a party for when he rang the bell, and we were looking forward to him getting his wiggly’s out. We had a trip to Disney booked for the following June, and Make a Wish had arranged for us to go to Lapland that in the December. It was going to be brilliant, it was all good. We had to pop up to the clinic to get his lines flushed, and that’s when the doctor pulled me to one side.

I asked the doctor about the scan and he said they were going to get in touch with us later today because they’d found something on it. He said they couldn’t be 100% sure what it is, but they thought it was a relapse. I couldn’t believe it, it was completely unexpected. We thought he was fine. But looking back now, yeh he was more tired, but we put it down to the amount of chemo he’d had.

We went to Birmingham the next day, we thought we were just going for a biopsy, which is an outpatient’s appointment. But when we got there they said they wanted to do full surgery on him. They said we’d need to be there for a week, but we had nothing with us

It took two weeks to get the results back, the wait was agonising. We went in to get them, and that’s when they said he’d relapsed. But, the normal protocol for relapse he couldn’t do because he’d already had radiotherapy. He shouldn’t really have relapsed, when he first got diagnosed I asked what the chances of him relapsing were and they said it’s very very very low. So the fact he’d relapsed was not great.

He had six months of chemo again starting in the October, he was 4 yrs. old at this point. He’d have three days of the different chemo drugs, they were all really strong, and it was intense treatment. He couldn’t really have any breaks from it, but he had to because after the first lot he ended up with norovirus, it was going around the ward.

That lot of chemo finished in April, he then had to have something called melphalan, which was a very very strong chemo. For that they had to harvest his stem cells, we went to Birmingham for that. The machine was like a dialysis machine, He was on that for about four hours. They got plenty from that, which was good news. We had to go back to Birmingham a week or two later to have all this treatment. The side effects they talked us through were horrendous. They gave him the melphalan first, and then the stem cells. We thought he was fine, although he was constipated. They gave him laxatives, and we noticed he was having to go to the loo a lot. The doctors tested him as it wasn’t right, and he’d got C.Difficile. One night he had three clip stands attached to him. He was five by now and we had to buy him nappies, the poor thing. We were isolated so we weren’t allowed anyone in the room. He wasn’t allowed to go into the play room, although for two weeks he didn’t want to do anything, he just lay there in his bed. I think it was the worst we’d seen him. It was horrendous. I thought, we’d got this far, come on, we can get through this.

We’d got the all clear after this melphelane. They did an MRI scan on him and they said he was clear! It was amazing! His line was taken out on 7th July 2017. He got to ring the bell at last! It was the best thing. They did a little party for him, it was brilliant.

He went back to school in the September after we’d got the all clear. His head offered us the chance to put him back a year, she recommended we did because he missed out on so much, especially the social aspect of school and being with other children. He’d missed the whole of the reception year. We agreed to keep him back a year. The school were brilliant. He settled into school fine. My mum and aunt work there so he had people to talk to if he was worried or anything, and it was really reassuring for me.

CLIC Sargent Support

Our CLIC Sargent Social Worker was Kate. She was great at helping me with all our forms for benefits. She was so helpful for lots of things. She was able to sort us out with accommodation at the hospital too. She was there for when he went for his second operation which was good. She’d been looking on the board and spotted Lucas’s name, so she came to see us. She used to travel from Birmingham to Leek to see me, which was really nice. She was also amazing at pointing us towards other charities we’d never heard of.

Since Treatment

Lucas doesn’t like taking about when he was ill. We’ve got the odd picture up because he was ill for most of the start of his life, and we can’t help that with the pictures, but certain things he doesn’t like talking about. We were going to make a scrap book for him but he doesn’t want to. It’s a part of his life he wants to forget. We’ve been trying to give him lots of good memories to try and replace the bad. We’ve been on lots of holidays.

When the Covid lock-down happened in March and schools closed, Lucas was worried that would mean he’d have to be put back another year. He didn’t realise that it was closing for everyone and that no children would be going to school. He had two years for normality after this treatment, and then it was taken away from him again without warning. He’s back now, he’s in year three and really enjoying school.

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