Raise With Riley is a Special Named Fund at CCLG raising money in memory of 16-year-old Riley.
Riley was three years old when in March 2010 he was first diagnosed with Wilms tumour, a cancer of the kidney. His mum Vicky shares his story...
Riley was first diagnosed with Wilms tumour aged three in March 2010 and his initial treatment consisted of 12 weeks of chemotherapy, and surgery to remove his left kidney and a 12x10cm tumour.
Hearing your child has cancer is absolutely heartbreaking. Wilms tumour is curable if diagnosed early, but if the cancer relapses, the survival rate drops dramatically. Riley’s’ cancer returned in October 2011 to a lymph node in the area he'd had his last tumour removed. He had further surgery to remove the tumour and underwent 12 months of intense, gruelling chemotherapy and three weeks of radiotherapy.
After this, Riley then had an amazing seven years in remission, cancer-free. He was living life as he should, making childhood memories and milestones.
Shockingly, Riley's cancer returned again when he was 12, in September 2019, during his teenage growth spurt. He was extremely poorly this time, and the tumour was growing from his diaphragm and taking up all his chest, measuring 26x19cm.
The tumour had collapsed his left lung and pushed his heart over the wrong side. By the time we got to Queens Medical Centre in Nottingham, Riley was put straight on oxygen and high pain relief. Twenty-four hours later he had emergency surgery to de-bulk some of the tumour to help his breathing as well as emergency chemotherapy and a Hickman line inserted. This meant he spent a week in the intensive care unit.
Once it was confirmed it was Wilms tumour for a third time, Riley started again on chemotherapy for 12 months, together with two weeks of radiotherapy, a stem cell harvest and rescue and further high-dose chemotherapy at Sheffield Hospital.
During this relapse Riley underwent four major surgeries, one at Glenfield Hospital, in Leicester.
During this treatment, a tumour was also found in his remaining right kidney which turned out to be adult renal cell carcinoma. This meant Riley had two cancers at the same time and by some miracle, Riley beat all of this for the third time and got all-clear scans.
However, the Wilms tumour sadly returned for a fourth time, just 10 months later, in June 2021.
This time it was extremely aggressive: it was in both his lungs, his liver, his rib and a further 8cm tumour was found near the last surgery site, together with another tumour near his diaphragm
Because of the spread, the amount of cancer, and the fact it was once again the Wilms cancer for a fourth time, Riley was given chemotherapy as a purely palliative treatment. He was given this as IV palliative chemotherapy every three weeks from June 2021 to June 2022. Unfortunately, the cancer kept growing so Riley was switched to oral palliative chemotherapy care, which was administered every day at home from June 2021 to May 2023.
On 1 May 2023, Riley started having seizures. An ambulance was called, and Riley spent three days on the Rainforest Children’s Ward at Lincoln Hospital where scans revealed Riley’s cancer had again grown very aggressively and sadly, that it had spread to his brain.
We were sent home on Wednesday, 3 May and given 24-48 hours left with our precious boy. Riley, as always, proved everyone wrong and we got a lovely, cherished extra 24 days with him
Heartbreakingly, our lives changed for ever, as Riley took his last breath on the 27 May 2023 at 11.38am. Riley faced his long, numerous battles with Wilms tumour with courage, positivity, humour and a contagious smile.
We, as Riley’s family, will not let Riley’s fight be in vain, nor will we let his legacy end.
For Riley and many other children who face Wilms tumour we will be their voice and do our very best to help find a cure, or, at the very least, better, less harsh treatments for our children.
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Text CCLGRILEY to 70450 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 Raise With Riley so that your donation is allocated to the correct fund.