Reuben’s ROAR is a CCLG Special Named Fund raising money for research into rare renal tumours, with 10% of funds going towards CCLG’s general activities. Reuben was two years old when diagnosed in February 2019 with clear cell sarcoma of the kidney (CCSK). His mum Jo shares his story...
Reuben, our loving, adventurous little boy, didn’t really have any symptoms. One day I was changing his nappy, and noticed a lump in his stomach. I felt around and realised it was quite a solid lump, and thought maybe he had a hernia. So, on 6 February 2019, we took him up to A&E at James Paget Hospital, where a paediatric doctor came down to see him. He immediately said it wasn’t a hernia, and asked if we had any idea of what it might be. I said, other than a hernia, I could only think of horror stories.
He then told us to prepare for it possibly being one of those horror stories.
We went down for an ultrasound before being taken straight to a children’s ward. We were sat in a side room and told, yes, it is definitely cancer.
They thought it was a Wilms’ tumour and sent us to Addenbrookes the next day – my husband James’s 40th birthday - for further tests. They don’t do biopsies on suspected Wilms’ tumours, so from a CT scan, they confirmed the diagnosis and said Reuben would begin treatment very soon. About a week later he had his Hickman line fitted and began chemotherapy the same day. It wasn’t until we got to the surgery date to remove the tumour and he had a second OCT scan, that it showed the tumour hadn’t reacted. It had actually grown, despite the chemotherapy.
This raised a few eyebrows and when they actually did remove the tumour, and did the pathology on it, they said it’s not a Wilms’ tumour, but a clear cell sarcoma of the kidney (CCSK), a much rarer, more aggressive renal tumour. We then had our protocol completely changed, with radiotherapy added in. It was like going through that diagnosis process all over again, reliving it. We’d had the awful news of being told our child had cancer, and how it would be treated, to then be told, actually, this isn’t the cancer we thought it is but another.
There’s not much known about CCSK and it’s actually more aggressive and the outlook isn’t as favourable. At the time, I was seven months pregnant with our daughter, Willow, making things even more difficult. In what should have been a lovely time, waiting for our second child to arrive, it was spent wondering whether our first was going to survive.
Reuben’s birthday is 19 March and on his third birthday, he was in theatre for six hours. We found it hard when we first got the date through. But then we thought, of all the gifts we could possibly give him, getting that tumour out of his body was probably the best thing we could do. During the surgery, they removed his kidney, adrenal glands and a couple of lymph nodes as well.
His treatment and its side effects were harsh. His energy flitted - some days he was okay, some he didn’t really move at all. We had a lot of in-patient stays, transfusions. It more or less went to plan, though we did have delays along the way, through his blood counts being so low. We were told this was expected as it was quite an aggressive chemotherapy regime.
He had his last lot of chemo at the end of February 2020, and rang the bell the following month. We were really looking forward to ringing the bell, and then doing all the things that we hadn’t been able to for so long. Because of COVID, we had delays to things like removing his Hickman line, some of his scans were postponed. And, of course, we had to remain in isolation, so we couldn’t do any of the normal things. We were able to do a few things by the end of the summer, and Reuben was allowed to mix a bit more as it had been six months since his end of treatment.
Reuben turned four in March 2020, starting school in September. He’s quite a social creature and is over the moon to see his friends. Being in isolation for months on end, other than oncology children, he didn’t really see anybody else, like his nursery or pre-school friends. Now he gets to spend every day with them and it’s lovely to see him developing these new friendships.
He loves animals and always keeps his cuddly toys close. They all had to travel with him to hospital and stay around his bed. They were his little comforts, his friends from home. His three favourites are his crocodile, Claude, Gerald the goose, and Ollie, the brave lion. Reuben’s our own little lion - so brave, fighting his way through.
He’s always been quite boisterous and loud, always “rah-ing”, hence the name ‘Reuben’s ROAR’. The hospital staff love his cheeky, funny nature. He likes to be busy, and he’d be zooming up and down at Addenbrookes. Even on days he wasn’t feeling so great, he’d be talking to the nurses, asking them lots of questions.
We want to raise money for research into rare renal tumours. It doesn’t have its own treatment plan, and treatment is based on a high-risk Wilms’ tumour. The drugs used are decades and decades old, with horrific side effects. It seems kind of forgotten about a little, and we want to change that. There’s so little known about CCSK and information available for families. It needs more research or a study where they can gather more information. There needs to be more funding.
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Open an online fundraising page for Reuben's ROAR
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Text CCLG 5 REUBEN to 70300 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Reuben's ROAR so that your donation is allocated to the correct fund.