16 Dec 2025

The new protocol that turned things around for little Vinnie

Breakthroughs in new treatments happen all the time. For Sarah Kent it was one such newly launched drug regime that turned things around for her son Vinnie. After months of desperation when chemotherapy failed to have an impact, a change in protocol offered the family hope. 

Vinnie was four years old when he started complaining his legs were hurting. Sarah noticed he was lethargic, short of breath, had constant ear infections and a strange lump on the back of his neck. 

“We first went to the doctor in June 2023, and again the following month as he was no better,” said Sarah, 33, who lives with Vinnie in Bridgend, Glamorgan, Wales, works in the cardiology department at the Princess of Wales Hospital in Bridgend. “Both times we were told he had a virus. Then we took him to A&E at as he had an uncontrollable temperature. They thought it was meningitis initially but they got everything under control with paracetamol and ibuprofen and we were eventually sent home. In August he was admitted to the hospital but again we were sent home with the news that, yet again, it was just viral. Mother’s instincts kept telling me something was wrong but the doctors just told me I was being an over-protective parent. 

“In September, we went to A&E again and were told the same thing. In fact at that point the GP referred us for physio for his aching legs. None of it made any sense but what choice did we have?” 

It wasn’t until the November, months and multiple medical visits after Vinnie started showing symptoms, that things changed.  

“I had a phonecall from the school to go and collect Vinnie as he wasn’t himself. He was completely lethargic, couldn’t walk and was very pale. We were back in A&E on the Friday evening and were again told it was viral. The following week I went back to the GP and this time I made them listen to me – this wasn’t right and I wanted more investigations. We were sent to the children’s ward in the Princess of Wales hospital where at last I talked to the best doctor who listened to my concerns and immediately took action by taking a simple blood test.” 

On 27th November 2023, Sarah was told Vinnie had precursor B-cell acute lymphoblastic leukaemia (ALL). 

“The consultant said ‘you can’t be by yourself when I tell you the results’ so Vinnie’s dad joined us. We were devastated with the news but I was so relieved that I wasn’t going crazy and someone was finally listening to me. I fought so hard for Vinnie to get the help he deserved but I honestly felt like they thought I was mad.  

“But it was of course the worst possible news for any parent to hear. Your child has cancer. How does anyone comprehend that. Well you don’t! Not now, not ever. You walk into a world you’d never imagine being a part of. A world of hospital appointments. Chemotherapy. Low immune systems. Fear of germs. A world of the complete unknown.” 

Within two hours Vinnie was given a blood transfusion and the next day he was sent to Noah’s Ark Children’s Hospital in Cardiff. He and his mum would spend most of the next year and half there. 

“We walked onto Rainbow Ward that day having no idea what was in front of us, no idea the rollercoaster we were about to endure, feeling completely lost and alone. But little did we know, we were also about to meet the strongest parents and the bravest children and we would make friends, that we will treasure forever. 

“Vinnie isn’t a straight forward case of ALL and they told us this was going to be a very long and very tough battle. Our little boy was going to put these consultants to the test at every given opportunity.” 

Two days later, Vinnie started his chemotherapy. He was given four cycles over five months, but weekly bone marrow tests showed the drugs weren’t working.  

“I had to stop work and didn’t go back for a year. He developed meningitis and would pick up every infection going. We’d go home in the morning and then he’d be back that afternoon as he had a temperature spike. Incredibly, he in himself was really fine. He’s always been such a strong character. He lost his hair, which was ginger from his dad but grew back even more flaming red. Vinnie on steroids was quite a thing – we call him the ball of ginger fury!”  

Although Vinnie’s care was carried out in Cardiff, because of his unusual leukaemia it was overseen by the country’s top doctors. Then the news came that because the standard treatment wasn’t working they would need to change course to a new treatment. 

“They decided on Dasatanib, which is an oral chemotherapy taken every day as a tablet, and Blinatumomab, which is an immunotherapy treatment which would be given to Vinnie via a pump for two months.  

“Every step of this journey came as a battle. The Blina bag caused immense problems for Vinnie. They couldn’t gain access for a PICC line in his arm so they put one in his leg, and this developed some blood clots and so that was removed. He then had a Hickman line as well as the porta Cath inserted. He was very restricted and was in and out of hospital with infections on his Hickman line that the Blina was running through.” 

Because of the amount of time that Vinnie was in hospital, both he and his mum started to build up a strong support network of what she calls ‘beautiful forever friends’. 

“Vinnie has built relationships with so many children on his journey and watching them fight this together has been amazing. His friends range from age three to 17. They’ve spent days together on the ward playing together, dancing, racing around and finding ways to wind up the amazing nurses, play therapists, and healthcare staff who never complain and are happy to get absolutely soaking wet with water-filled syringes turned into water pistols just to see these children smile. 

“The children also learnt to help each other. Vinnie knew how to change dressings and flush his little friend’s line by the end of it, and it really helped him accept the nasal gastric tube he was being fed through and showed him how brave he was. Every child and their treatment is different, but they all show the same resilience and power to make the days on the ward count. We all become a family. A family none of us wanted to be a part of but a family we couldn’t be without!  

“I also made friends with the other mums and dads and we’re all on a WhatsApp group to support each other. I don’t think I would have got through it without them. We entered a world of unpredictability and fear alone, but it didn’t stay like that for long. The bonds the children have developed are amazing and knowing they fight this journey together is just heartwarming.” 

Eventually Sarah heard the news she was desperate to hear – the treatment had worked.  

“Blina put him where he needed to be. The relief was so real. He still has a high risk of relapse due to the nature of his leukaemia but we’ll live for today. All the parents are doing this to a certain extent.” 

Vinnie is now on maintenance treatment with oral chemotherapy tablets every day and intravenous once a month, scheduled to finish in 2027. He moved up from nursery to Year 1 at school in September 2025. 

“The school have been amazing. He was only at nursery for two months before he got ill but they would Facetime him. They made sure the friends he made there were put in his class, and they understand he needs lots of time off to go back and forth to hospital when he’s ill.  

“At the moment he’s got four infections including shingles and you wouldn’t think anything is wrong with him. In a strange way this whole experience has given him confidence. He used to be quite quiet but there’s no quiet now! He’s the boss of everyone and tells the nurses and doctors what to do, and even though he’s the smallest of the friends group at the hospital he bosses them around and they all listen! 

“The isolation of it all was horrendous for both of our wellbeing. Not being able to work and him not being in school or around his friends was just awful. He developed separation anxiety being away from me and this is still a problem for us some days. We’re doing the best we can with that. He’s also close to my mum Karen and my nieces Grace and Ruby-may. They’ve helped us so much. At least now we can start to make tentative plans. He loves MMA fighting and wants to go and do it in the gym, and we’d like to go on holiday in 2027 is also on the cards. 

“For now though it really is a day at a time. As a parent of a child with cancer I stand with all the other parents going through this journey and just believe that with the friendships you make along this road you will fight together.”