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Benny, 4 💙
Stage 4 high risk neuroblastoma
Diagnosed February 2023
Relapse September 2025
Documenting his journey and fundraising to get him to Rome for CAR-T cell therapy.

“Life is a combination of magic and pasta” 🍝 On our way to the hospital for our week 8 evaluations.
30/07/2026

“Life is a combination of magic and pasta” 🍝

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



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 ba...
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 💙



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



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



T-cell infusion dayBenny was admitted to hospital as an inpatient last Thursday in preparation for his CAR-T cell therap...
04/06/2026

T-cell infusion day

Benny was admitted to hospital as an inpatient last Thursday in preparation for his CAR-T cell therapy. He started the first of 3 days of chemo on Saturday. This is designed to reduce the number of lymphocytes (white blood cells) in his body, ready for the modified t-cells to be infused.

He had a couple of “rest” days and then today the cells were put back into his body. They brought a virtual reality headset for him to use as a distraction while they were putting the cells back in and he enjoyed watching some bees buzzing around 🐝

Benny is still feeling well in himself. After the infusion he seemed a bit delirious in the way that he was talking and walking but the doctors assured us that this is normal. There’s still a very strong sweetcorn smell lingering in the room from the preservative that they use for the cells.

From what we’ve heard, the side effects usually start to appear from around 3 days post infusion so now we just wait and make the most of him feeling well in the meantime.

To everyone that helped us reach this point in any way, thank you from the bottom of our hearts ♥️



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