All for Rio
Donation protected
On 17th April last year, we found out that one of our beautiful little boys, Rio, had cancer. He was 3 at the time. Rio initially complained of tummy ache & we felt a lump on the side of his stomach. We took him to our GP the same day who suggested it was constipation. Only a few days later he started violently vomiting green bile & we took him to our local A&E knowing something really wasn’t right…here they suggested it could be an obstruction in his bowel that would require surgery. We were transferred from Blackburn A&E in an ambulance to Royal Manchester children’s hospital. Only one parent was allowed to go. We had no idea how our life was about to come crashing down around us.
Close to midnight that Saturday night, two paediatric surgeons came & spoke to me. I’ll never forget the look on their faces or their life changing words. The male surgeon told me ‘We are almost certain this is a nasty lump’ I was horrified. I said ‘Do you mean cancer?’ And he said ‘Yes’. I had to tell Tom this over the phone. He came to Manchester to be with us immediately. Our family’s world as we knew it, completely destroyed in that one, short, heartbreaking conversation. We watched Rio sleeping & sobbed together until the early hours. Everything then started to happen very fast, we quickly found ourselves admitted on the oncology ward at RMCH. Rio had x rays, blood tests, an ultrasound scan, CT scan & MRI scan under sedation. Our consultant told us he had stage four cancer; a large tumour on his right kidney & that it had spread to his lungs - a tumour on each of his lungs. We were completely devastated. It was like we were living in a nightmare.
A few days later Rio went under general anaesthetic to have a Hickman line fitted & biopsy of the tumour before we were given an official diagnosis. He was diagnosed with a rare type of kidney cancer; A Wilms tumour. Only around 80 children are diagnosed with it in the UK each year. Since then, he has endured 12 months of intense chemotherapy, including 6 different cytotoxic drugs (Vincristine, Dactinomyocin, Doxorubicin, Etoposide, Carboplatin & Cyclophosphamide). Ten consecutive days of Radiotherapy to his lungs (under daily general anaesthetic). Plus a four hour surgery to remove his right kidney & primary tumour. The treatment he has had is likely to make him infertile.
After Rio’s surgery last June, we received more shattering news. The pathologist found Rio’s cancer to be ‘High Risk’ and Anaplastic (only 5-8% of all Wilms tumours fall into this category) This changed everything. It means that Rio’s cancer is made up of unusual & rapidly dividing cells. They are resistant to chemo. It makes it much harder to cure & much more likely to come back after his initial course of treatment. Rio’s cancer also displayed large components of ‘Blastema’ - a second rare & unfavourable characteristic which is distinguished by its rapid & aggressive evolution; these cells are considered to be the most cancerous cells. Making it the most rare & aggressive type of Wilms there is. It was the worst-case scenario & not the news we were praying for or expecting.
However, despite the odds, in April this year we had some very positive news…Rio’s scans showed NO EVIDENCE OF DISEASE! Our consultant at RMCH showed us the before & after images of Rio’s scans. The remaining tumours on Rio’s lungs had gone & they couldn’t see any residual cancer anywhere else in his body. It was the BEST possible news we could have hoped for. A massive milestone. We aren’t so naive to think that this is fully behind us however. The ‘High risk’ and Anaplastic features of Rio’s diagnosis make his chance of relapse high. Should he relapse, our consultant has advised that we will not have many (if any) options left for treatment & Rio’s chance of survival will plummet to around 10%. This is the whole reason behind our ‘All for Rio’ fundraising campaign!
This is one brutal & relentless disease we are up against. We live everyday not knowing if Rio will survive this long term or not. We could find ourselves in a desperate position where we need to access a clinical trial overseas quickly to try & save Rio’s life. We will not risk being unprepared for this! Post treatment, Rio will have x-rays & Ultrasounds every 3 months to check for cancer. His next scans are in October. We need to be vigilant in noticing symptoms or changes in Rio’s body & general health so that we can act fast if necessary.
We are pushing fundraising efforts to the limit in 2023. We want raise as much as we can, as quickly as we can! (in case he relapses quickly, which is common for Anaplastic Wilms) We are begging for help…there’s only so much time as a family we can dedicate to planning fundraising. Please consider if there is something you could do to help us- a donation, fundraising challenge, idea or event? People have done some remarkable things to help us so far, but unfortunately more is needed. Clinical trials abroad can cost in the region of $1,000,000.
Tom & I are so touched & enormously grateful to the family friends & strangers who have shown us so much support & kindness ❤️ We are SO proud of Rio & his little brother; Rudy who is a massive part of this too. They are both remarkable.
Rio is the most courageous & inspirational little boy. He recently had his Hickman line removed under GA…another huge milestone for our family. His beautiful little body has been through far too much in the last 14 months…it is amazing to see it with no tubes hanging out of his chest!
Rio is currently thriving, enjoying being a little boy & very excited to start school in September! Please God let this be the start of our new beginning. And if it isn’t & he relapses… we will be as prepared as we can possibly be. We will have done everything in our power to give him the best possible chance of survival.
Thank you from the bottom of our hearts.
Chloe & Tom Spurr x
Follow Rio’s story on our Instagram pages:
@mrschloespurr
@tommy_spurr30
Close to midnight that Saturday night, two paediatric surgeons came & spoke to me. I’ll never forget the look on their faces or their life changing words. The male surgeon told me ‘We are almost certain this is a nasty lump’ I was horrified. I said ‘Do you mean cancer?’ And he said ‘Yes’. I had to tell Tom this over the phone. He came to Manchester to be with us immediately. Our family’s world as we knew it, completely destroyed in that one, short, heartbreaking conversation. We watched Rio sleeping & sobbed together until the early hours. Everything then started to happen very fast, we quickly found ourselves admitted on the oncology ward at RMCH. Rio had x rays, blood tests, an ultrasound scan, CT scan & MRI scan under sedation. Our consultant told us he had stage four cancer; a large tumour on his right kidney & that it had spread to his lungs - a tumour on each of his lungs. We were completely devastated. It was like we were living in a nightmare.
A few days later Rio went under general anaesthetic to have a Hickman line fitted & biopsy of the tumour before we were given an official diagnosis. He was diagnosed with a rare type of kidney cancer; A Wilms tumour. Only around 80 children are diagnosed with it in the UK each year. Since then, he has endured 12 months of intense chemotherapy, including 6 different cytotoxic drugs (Vincristine, Dactinomyocin, Doxorubicin, Etoposide, Carboplatin & Cyclophosphamide). Ten consecutive days of Radiotherapy to his lungs (under daily general anaesthetic). Plus a four hour surgery to remove his right kidney & primary tumour. The treatment he has had is likely to make him infertile.
After Rio’s surgery last June, we received more shattering news. The pathologist found Rio’s cancer to be ‘High Risk’ and Anaplastic (only 5-8% of all Wilms tumours fall into this category) This changed everything. It means that Rio’s cancer is made up of unusual & rapidly dividing cells. They are resistant to chemo. It makes it much harder to cure & much more likely to come back after his initial course of treatment. Rio’s cancer also displayed large components of ‘Blastema’ - a second rare & unfavourable characteristic which is distinguished by its rapid & aggressive evolution; these cells are considered to be the most cancerous cells. Making it the most rare & aggressive type of Wilms there is. It was the worst-case scenario & not the news we were praying for or expecting.
However, despite the odds, in April this year we had some very positive news…Rio’s scans showed NO EVIDENCE OF DISEASE! Our consultant at RMCH showed us the before & after images of Rio’s scans. The remaining tumours on Rio’s lungs had gone & they couldn’t see any residual cancer anywhere else in his body. It was the BEST possible news we could have hoped for. A massive milestone. We aren’t so naive to think that this is fully behind us however. The ‘High risk’ and Anaplastic features of Rio’s diagnosis make his chance of relapse high. Should he relapse, our consultant has advised that we will not have many (if any) options left for treatment & Rio’s chance of survival will plummet to around 10%. This is the whole reason behind our ‘All for Rio’ fundraising campaign!
This is one brutal & relentless disease we are up against. We live everyday not knowing if Rio will survive this long term or not. We could find ourselves in a desperate position where we need to access a clinical trial overseas quickly to try & save Rio’s life. We will not risk being unprepared for this! Post treatment, Rio will have x-rays & Ultrasounds every 3 months to check for cancer. His next scans are in October. We need to be vigilant in noticing symptoms or changes in Rio’s body & general health so that we can act fast if necessary.
We are pushing fundraising efforts to the limit in 2023. We want raise as much as we can, as quickly as we can! (in case he relapses quickly, which is common for Anaplastic Wilms) We are begging for help…there’s only so much time as a family we can dedicate to planning fundraising. Please consider if there is something you could do to help us- a donation, fundraising challenge, idea or event? People have done some remarkable things to help us so far, but unfortunately more is needed. Clinical trials abroad can cost in the region of $1,000,000.
Tom & I are so touched & enormously grateful to the family friends & strangers who have shown us so much support & kindness ❤️ We are SO proud of Rio & his little brother; Rudy who is a massive part of this too. They are both remarkable.
Rio is the most courageous & inspirational little boy. He recently had his Hickman line removed under GA…another huge milestone for our family. His beautiful little body has been through far too much in the last 14 months…it is amazing to see it with no tubes hanging out of his chest!
Rio is currently thriving, enjoying being a little boy & very excited to start school in September! Please God let this be the start of our new beginning. And if it isn’t & he relapses… we will be as prepared as we can possibly be. We will have done everything in our power to give him the best possible chance of survival.
Thank you from the bottom of our hearts.
Chloe & Tom Spurr x
Follow Rio’s story on our Instagram pages:
@mrschloespurr
@tommy_spurr30
Co-organizers (3)
Dan Jordan
Organizer
Thomas Spurr
Beneficiary
Chloe Spurr
Co-organizer