On 17th April, we found out that our beautiful Rio has cancer. 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 likely to be constipation. Only a few days later he started violently vomiting & we took him to A&E knowing something wasn’t right…here they suggested it was 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 where our lives changed forever. A paediatric surgeon told us we are almost certain it is a ‘nasty lump’ we said ‘do you mean cancer?’ And they said ‘yes’. Our family’s world as we knew it, completely destroyed in that one devastating conversation.
We quickly found ourselves admitted on the oncology ward. 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. A few days later he went under general anaesthetic to have a Hickman line fitted & biopsy of the tumour before we were given an official diagnosis. He is diagnosed with a rare type of kidney cancer; Wilms tumour. Only around 80 children are diagnosed with it in the UK each year.
Rio’s been having chemotherapy at Manchester children’s hospital since April. He underwent a four hour surgery in June to remove the main tumour & his right kidney.
After his surgery we received some shattering news. The histology of the cancer they removed was unfavourable & ‘high risk’ (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 & more likely to return if he is cured after his initial course of treatment.
When the pathologist looked at Rio’s tumour under the microscope after his surgery, he found Rio’s cancer had ‘diffuse anapalasia’ rather than ‘focal anapalasia’ meaning the rare & rapidly dividing cells were found throughout his cancer, rather than only in parts of it. Making it the most rare & aggressive type of Wilms there is.
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 malignant cells. Rio will undergo at least 9 more months of more intense, high dose chemo at Royal Manchester children’s Hospital. He is also having a course of daily radiotherapy (at the Christie hospital) to his lungs.
The ‘high risk’ features as well as lung tumours make Rio’s cancer more likely to come back. If it does, (most commonly Wilms tumours relapse in the first 12 months after completing treatment) Rio’s chance of survival will be around 10%; we won’t have many (if any) options for further treatment in the UK….as he will already have had a lot of the toxic chemotherapy drugs his body can take - plus radiotherapy. This is one brutal & relentless disease we are up against. We live everyday not knowing if Rio will survive this or not.
Our consultant has explained that a pot of fundraising money is a way of paying for further new treatments or clinical trials available overseas. And we want to be ready for this. Rio is the most beautiful, courageous & special little boy & he deserves every possible fighting chance of surviving this cruel disease.
The money we have raised so far is nothing short of gob smacking. Tom & I are SO touched by everyones generosity. Totally & utterly blown away. Family, friends & strangers have shown us so much kindness ❤️ We really do appreciate it a lot.
Our campaign is gaining more & more media coverage from TV, radio & journalists, which will help us. But this is only the beginning. We are working with our consultant on our fundraising target; but we know it is likely to be hundreds rather than tens of thousands.
We are SO proud of Rio! Beyond proud of both him & his little brother; Rudy who is a massive part of this too. They are both remarkable little boys! Rio has been through far too much already & a lot more to come but still he continues to smile & sing his way through this hideous disease. Rio’s infectious personality & beautiful smile are what keep Tom & I going!
There will be much much MORE to come in the way of events & fundraisers from us over the coming months. We plan to raise awareness, raise funds & raise hope! Let’s see where we can take this for our beautiful Wilms Warrior Rio!