Solving Kids’ Cancer UK
Rio's Campaign
Rio is a happy, playful and energetic two-year-old who adores cars and spending time with his big sister Lillyrose! In August 2023, Rio was diagnosed with stage 4 high-risk neuroblastoma.
Story
Rio is a happy, energetic, and playful little boy. His best friend is his big sister Lillyrose (9 years old) who he loves nothing more than spending time with. Rio is a much loved, and much longed-for sibling for Lillyrose, who would often ask Santa for a baby brother every year up until Rio was born in April 2021. They have a magical bond and the love they have for each other is so strong and inspiring. Rio’s diagnosis has greatly affected Lillyrose physically and mentally, which for the family is heartbreaking to watch.
In August 2023, their beautiful baby boy was diagnosed with high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
Rio’s parents, Vickie and Don, are fundraising for potentially lifesaving treatment not available through the NHS, either to get their son into remission or to try and keep the cancer away if his frontline treatment goes to plan. This could cost hundreds of thousands of pounds.
Rio’s story
In June 2023, the family noticed that Rio had a loss of appetite, was tiring very quickly and appeared to have pain in his bones. Due to Rio’s delayed speech from his glue ear, and only recently having had grommets fitted he was unable to communicate what he was feeling to his parents, but his parents' intuition was telling them something wasn't right.
After these issues persisted, Rio and his parents were back and forth at their local hospital for two months due to Rio spiking a temperature constantly, walking with a limp, and going off his food and refusing to eat. Food was a big sign something was wrong, as up until this point Rio loved his food. He was often called “Brucie Bog Trotter” from the film Matilda as he lived for his food so the family knew something was not right. After being an inpatient for 12 days Rio's parents were told that he appeared to have a blocked kidney, but after being transferred to St George's Hospital, further scans devastatingly revealed a large solid tumour located near to his right kidney. The disease by this point had metastasised to his bone marrow, shoulder, pelvis, lower spine and skeletal frame in his skull. The family's world fell apart.
On the 25th of August 2023, our world was changed forever when we were given the devastating news that Rio had been diagnosed with stage 4 high-risk neuroblastoma," Rio’s mum, Vickie.
Treatment so far
High-risk neuroblastoma is particularly aggressive and so the treatment for neuroblastoma is equally as aggressive.
To date, Rio has endured induction chemotherapy which was his first stage of frontline treatment on the NHS for high-risk neuroblastoma. This stage of treatment meant Rio was only home 2 out of every 10 days on average throughout the entire 70-day cycle. His time at home was dependent on his temperature as temperature spikes are very common for cancer patients, and often result in a family being readmitted for a 48-hour hospital stay for intravenous antibiotics.
In December 2023 Rio had major surgery at St Georges Hospital to remove as much of his main tumour as possible. Unfortunately, Rio encountered several complications which resulted in a bowel obstruction which required additional surgery. This was a hugely challenging time for the family.
Rio is now undergoing high-dose chemotherapy, and stem cell transplant. This stage of treatment has been particularly hard for all the family and has meant that Lillyrose has been isolated from her family whilst they stay in hospital, to reduce the risk of infection. Whilst going through stem cell transplant Rio developed VOD (Veno Occlusive Disease) which is effectively liver poisoning. As a result of this, Rio's fluids are restricted to two-thirds of his daily requirement to dehydrate his body to release the fluid build-up in his abdomen. “There is nothing worse than seeing your baby so dehydrated to the point they are begging you, the doctors, nurses or anyone who enters the room for a drink and knowing you are unable to give them one. This will continue to haunt me," Rio's mum, Vickie.
Once his VOD symptoms decrease, Rio will have scans and will then move on to radiotherapy. After completing radiotherapy, Rio will have six months of immunotherapy to complete his NHS frontline treatment. His family hope once treatment is finished that Rio will be eligible to access potentially lifesaving treatment not available in the UK through funds raised.
Rio’s diagnosis has had a huge effect on the whole family, especially big sister Lillyrose.
"Lillyrose is very much a family girl and wears her heart on her sleeve. She has had to grow up fast and has moved in with her auntie and uncle as a result of Rio’s diagnosis. She often asks us heartbreaking questions about Rio's treatment, and prognosis. Things a little girl of her age should not be worrying about," Rio's mum, Vickie.
Vickie and Don are supporting Lillyrose to understand what her brother is going through and what may lie ahead for the family.
No parent should have to go through this. We need your help to give Rio the chance to make it to his next birthday, to see his first football game, to grow old and have his first relationship, his first heartbreak and his first job.” Rio’s parents, Vickie and Don
Solving Kids' Cancer UK's children's fundraising campaigns
Funds raised will go towards helping Rio and his family. If Rio no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Rio, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
