Stand by Benny

20/08/2026

Thank you so much to County Durham & Darlington Fire & Rescue Service.

Benny had another great visit to the station this week and had the biggest smile on his face the whole time we were there.

Right from the start of our fundraising journey Gary Tough and the Fire Service have gone above and beyond to support us and we can’t thank them enough.

We also wanted to say a huge thank you to the North East Fire and Rescue Boxing Team for supporting Benny at their upcoming tournament. We know how much work and effort goes into setting this up and we’re so grateful to them for getting into the ring to support Benny.

There are still tickets available for the event at the Crowne Plaza in Newcastle. The link to tickets is in the comments of the original post if anyone would like to attend.

We’ll be in Rome which means we’ll miss it but we’ll certainly be cheering them on from afar 🥊

13/08/2026

We’re back in Rome for his week 10 check up.

We haven’t had any more news since his scans at the end of July. We might find out more today but he’s got another week of scans at the end of August so we’re staying hopeful for good news from those. He’s well in himself and has lots of energy which is great to see.

Over the last couple of weeks he’s been able to visit family, catch up with a few friends and went back to his football sessions so it’s been lovely to have some normality and to be able enjoy the summer holidays. It’s sometimes the simple things that fill up your cup the most.

Thank you as always for all of your support and kind words. It really does mean a lot to us ❤️

09/08/2026

We would like to say a massive thank you to The North East Fire and Rescue Boxing Team who are helping to raise funds and supporting Stand by Benny at the boxing tournament at the Crowne Plaza Newcastle on Friday 28th August.

Firefighters from across the North East and further afield will soon be going head-to-head in the ring for what promises to be a great night of boxing. 🥊

If anyone would like to share or support, please find the link below:

https://www.justgiving.com/page/ne-fireandrescueboxing?utm_medium=FR&utm_source=CL

Thank you for your continued support 🩵

Help Gary Tough raise money to support Solving Kids’ Cancer UK

30/07/2026

“Life is a combination of magic and pasta” 🍝

On our way to the hospital for our week 8 evaluations.

24/07/2026

It’s now 7 weeks since Benny had his CAR T-cell infusion and we were able to fly home a couple of days ago. We’ll fly back to Rome again on Wednesday as his doctor wants to see him but we jumped at the opportunity to come home. Benny has quite quickly adapted to being in Rome and just accepts it as his new normal but we’re hoping he’ll feel the benefit of being back home and surrounded by his friends and family for a few days.

We haven’t yet received the results of his bone marrow biopsy, lumbar puncture and CT scan but his MiBG scan was clear which was a huge relief and we’re hoping the rest of the results go the same way 🤞

It sometimes feels difficult to write down the positive news in case we jinx it but we’re trying to move away from that way of thinking and celebrate the wins when we can. We also wanted to share it with you as we’re so grateful to you all for getting us to this point 💙

12/07/2026

Benny enjoyed a visit from his sister Zara, his Auntie Laura and Uncle Brian this week which really lifted everyone’s spirits.

After 7 weeks apart it was lovely to see them playing together and enjoying each other’s company.

Benny is still an outpatient and had a few free days in the middle of the week so it was great to have a break from the hospital environment. We spent a few days relaxing and showing them around Rome.

Benny has scans, a bone marrow biopsy and lumbar puncture scheduled for next week. Scan week is always nerve-wracking but we’re keeping everything crossed for some positive news.

Thank you as always for all of your support, it really does mean so much to us.

21/06/2026

After 22 nights in hospital, Benny was discharged from the ward on Friday and will now carry on with follow ups as an outpatient.

During his stay, Benny did not experience any high temperatures or the symptoms they usually expect to see when your immune system is reacting to the treatment. On day 7 post infusion, they tested his blood and could not see any of the CAR-T cells circulating. We’re now awaiting the results of a more detailed blood test and really hoping that we’ll get more positive news next week 🤞

Benny is definitely more tired and finding it hard to walk a lot at the minute after his long hospital stay but we’re hoping he’ll build back up his strength again. He’s also lost his hair again which is upsetting for him but hopefully it’ll start growing again soon. He’s otherwise well in himself and back to enjoying daily gelato 🍦

During an echocardiogram on Friday he could see red and blue colours in his heart. He thinks that the CAR-T cells that they put into him are Spiderman cells and that he’s getting Spidey powers 🕷️

Happy Father’s Day to Dan. Zara isn’t here with us so it doesn’t feel much like Father’s Day but I didn’t want to let it pass without acknowledging how thankful we are for him 💙🩷

Thank you again to everyone that helped to get us to Rome. We really wish that we’d been able to thank everyone personally but we’re so grateful to each and every person who has supported us.