Arianna’s story. Diagnosed with neuroblastoma and travelling for treatment

Arianna was diagnosed with neuroblastoma at just five years old and has been having treatment across the UK ever since including chemotherapy, a stem cell transplant and immunotherapy.

Arianna had been struggling with back pain and her Mum noticed she wasn’t acting like herself and started limping while at a family party. She took her to the minor injuries unit that day and in the next six days she went to A&E eight times, the GP once and the urgent care unit once. An X-ray later showed a mass and her parents were given the diagnosis of neuroblastoma.

Arianna was diagnosed with neuroblastoma and has been in and out of hospital since

“I noticed that Arianna was just sitting in the corner, she wasn’t interacting with any of her cousins and she’s got a lot of cousins, one that she goes to school with and is best friends with and she wasn’t interacting with him at all, wasn’t on the bouncy castle, they all sat round and ate pizza and she didn’t want to. She just sat in the corner playing by herself. I wasn’t happy and I noticed something’s not right. My Dad turned round to me as she got up to walk towards me and said ‘is she limping?’ and I was like ‘she is actually’ and straight away I thought I’m not happy about that so I took her straight to the minor injuries unit, because I thought it must be muscular.

“Within the space of six days, I went to A&E eight times, I went to the GP once and the urgent care unit once. It was just a whirlwind, by the end I was so angry with them – they were treating her for sepsis and meningitis because they thought her infection levels and inflammation markers were really high. By this point her temperature went up to 40.8 at one point, it was unbelievable. The pain that my poor girl was in was so disgusting, it was ridiculous. It was waking her up in the middle of the night. I knew something wasn’t right. They gave her an X-ray did blood tests on her, put a cannula in to give her IV antibiotics because they could see by her blood results that something wasn’t right but no one could tell me what.”

Arianna and her mum were back at A&E as she wasn’t getting any better after several days of antibiotics.

“They did the heart scan and that was all clear and they did the kidney scan and then the consultant originally said ‘we’re not going to find anything, they’re looking for some sort of infection and we never find infections’, I said ‘ok hopefully you do, I was looking for an infection on her kidneys as that would just be treated with different antibiotics’. He turned around and said ‘i just need to get my senior in’. Me and my husband looked at each other and we knew that that wasn’t normal.

“They said they had found a mass on her left kidney and any mass we have to call a tumour. So they had found a tumour on her left kidney. Obviously, me and my husband, our first question was ‘is it cancer?’ and they answered saying ‘we can’t rule that out’. They got a consultant in, it was all really immediate.”

Arianna’s mum and dad were taken into a room to speak to the consultant where they were told Arianna either had Wilm’s tumour or neuroblastoma and would be transferred to Great Ormond Street hospital to start treatment.

“Two days later, we were transported to Great Ormond Street. That whole week, from the Sunday to the Friday, she had tests done – MRI scans, MIBG scans with the nuclear medicine, CT scans, she had so many different things being poked and prodded, biopsies of the main tumour, biopsies in her bone marrow, all of that done in the space of six days. We were told, no matter what, chemotherapy would start on the Saturday but they suspected it was Wilm’s cancer, but we were told on 26th November that it was stage four high risk neuroblastoma and they were starting treatment on the 27th, the next day they started treatment. It was a really quick process to get the diagnosis and get the treatment started the next day.”

Ever since, Arianna has travelled across the UK to get various types of cancer treatment such as a stem cell transplant and immunotherapy. She has experienced various side effects including losing her hair.

“Losing her hair was most traumatic for her, she knew it was coming and when it started happening she was really traumatised by it to say the least. One particular conversation me and my husband had with her was really devastating. She actually has done really well with that, my sister ended up shaving her hair and so did I to show her that it doesn’t matter if you don’t have hair, you’re still beautiful. She actually turned around and said ‘i don’t mind being bald now’ which was really sweet.”

Her family have been supported by Young Lives vs Cancer throughout Arianna’s treatment – their Young Lives vs Cancer Social Worker has been there to help face everything cancer throws at them including arranging for them to stay at the charity’s Home from Homes near to Arianna’s treatment.

“She’s been amazing, she really has – anything we need she helps with – she helped us get the blue badge, she’s helped us with a load of different things. She’s been really helpful, anything we need doing she’s really quick at getting back in touch with us and get it over the line.”

Author: Emma

Posted on Tuesday 19 September 2023

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