Rory's story
Rory was diagnosed with stage 4s neuroblastoma when she was just two weeks old and was given a 30% chance of survival. She not only had to fight cancer, but sepsis too. In May 2024 Rory rang the bell and has officially been declared cancer free, ready to start school this August.
Rory’s mum Emily shares their incredible story.
“If you look at Rory now, you’d never know she’d been through so much. She is a wild and feisty little girl - our miracle baby. We are so very lucky.”
Rory’s symptoms
Our daughter Rory was born in February 2019. We noticed that Rory had a slightly swollen left eye, just above her eyelid and over her brow. She also had a bit of purple bruising but we thought it was just birth trauma. She was such a different baby to her older brother, she cried a lot and was generally very grumpy!
A couple of weeks after Rory was born, we were changing her nappy and she had a super swollen and hard abdomen. She’d been feeding and pooping normally so I immediately knew something wasn’t right. We took her to the GP straight away. He pressed her tummy and she had a bit of wind so they just suggested we gave Rory a different milk. Her tummy was still very swollen and her eye was also still bruised.
The next day Rory’s tummy looked even more swollen so we went back to the doctors. We saw a different GP at our practice and he took it very seriously straight away. He checked her over more thoroughly and we could tell by the look on his face that he wasn’t happy. I knew it was something sinister as he insisted we went to A&E immediately.
The doctors checked Rory when we got to the hospital and overall she seemed OK, but they were concerned about her distended tummy. She needed a cannula to take blood and I had to leave the room; I couldn’t bear seeing my tiny baby having needles stuck into her like that.
Rory’s diagnosis
“I kept thinking it couldn’t be right, how can a two week old have cancer?”
Rory then needed to be taken for an ultrasound and an x-ray and the nurses had to help us - she was a feisty wee thing and didn’t want to be held down! They found a shadow on the x-ray but weren’t entirely sure what it was, so needed to run more tests and keep an eye on her. They also thought she had a slight heart murmur as they could hear a slight ‘whoosh’ sound. She was sent to the acute medical ward overnight - we were still none the wiser as to what was wrong with our little girl.
In the morning, Rory was sent for another CT scan and ultrasound. The doctor had already consulted with the oncology team but needed another scan to make sure. Half an hour later, the consultant, doctor and nurse all appeared. The nurse offered to take Rory so that I could go with the doctors. My partner Matt was looking after our son and they didn’t even want to wait for him to arrive as it was so urgent that they spoke to me there and then.
We went off to a side room and I remember them saying “You’re not going to like what we have to say. We’re pretty sure Rory has cancer and we think it’s neuroblastoma.” I knew what neuroblastoma was already as a local girl called Kira had it and had been in the newspapers. It knocked the wind out of me. I kept thinking it couldn’t be right, how can a two week old have cancer? I didn’t cry until the medical team left the room but as soon as I called Matt, I burst into tears.
Our life in oncology began
Later that day, Rory was moved to the oncology ward and that night, our life in oncology began. Our consultant was lovely and made us feel so much better instantly, she gave us all the information we needed but not too much that it was overwhelming. The nursing team were fabulous too, Rory was one of the youngest oncology patients they’d ever had and they just loved having a baby on the ward.
We had a meeting the following day to discuss Rory’s treatment options. Treatment needed to start quickly; the tumour was near to and encroaching on her spine and had already spread to her liver. The doctors were convinced that the cancer started to develop before she was born because of how far it had spread.
Their first concern was surgery - they didn’t want to do surgery as the lump was so close to her spine and there was risk of paralysis, but if they left it, there would still be the same risk! The neurosurgeons were on standby but they were hoping that the steroids and chemotherapy would work to shrink the tumour.
Rory had an MRI, a lumbar puncture and her line under general anaesthetic. They also needed to do a biopsy of her liver in four places as the tumour was too developed. It was quite scary because of all the consultants coming in, signing consent forms. We weren’t allowed into surgery with her in case we got too distressed - it was horrible having to hand over our little baby at the theatre doors.
Four hours later, Rory was taken to ICU as she was still intubated. She had so many tubes connected to her and it was really shocking to see. But she handled the surgery well and we were told that she’d only need one night in ICU. She started chemotherapy the next day. Her chemo cycle was three weeks (so it was three days on, then the rest were recovery days and then it would start all over again). Rory was only three weeks old but it already felt like a year, it felt like the longest time ever.
Rory’s tummy kept growing every day. At its biggest, her tummy was 46cm. Her tummy would grow around half to one centimetre every day, she looked like a balloon ready to burst. At its biggest, her tummy was 46cm. Because of where the tumour was, it was always on the cards that Rory might have to go back to ICU, in case the tumour pushed too much on her lungs and she needed help with breathing.
But one day she was super grumpy and her pain relief didn’t seem to be working. The medical team wanted to keep a closer eye on her so she was moved to the ICU until her liver / tummy growth plateaued. She still looked so tiny but her liver was so big, it was horrible not being able to do anything. We couldn’t stay with her overnight as adults weren’t allowed but the nurses looked after her really well and we were able to get some rest at home. We also brought items from her bedroom to her hospital room to make it feel more like home.
Fighting cancer and now fighting sepsis
Then her abdomen / liver started to shrink. We kept a growth chart and it was so encouraging to see the measurements going down. Rory was doing well and the doctors were happy with her progress so she was moved back to the ward. But again, something wasn’t quite right that night. She was really grizzly and restless - I’d put her down to sleep and she’d wake up after about 90 seconds. The nurses kept checking on her but by midnight, Rory was really vomiting, grey and shivering. Her temperature was in the 40s and she needed antibiotics straight away for an infection.
The doctor took one look and was pretty sure she had sepsis. They sent her to ICU immediately - we had to wait in the corridor and I was in floods of tears as we had no idea what was happening to our wee girl. We were then taken to a side room and the doctors prepared us for the worst. She had an infection from her line and they didn’t think she’d make it.
“As if the cancer diagnosis wasn’t enough, this was a challenge we just didn’t need. It didn’t feel real - and it still doesn’t. You never expect that something like this would happen to you or anyone you know.”
The first 24 hours were critical but thankfully, she had a good night and was surprisingly very stable. When the doctors told us that they caught the infection and that they thought she’d pull through, it was a huge relief. I really feel it helped her fight the cancer too - she’d been so tired, fighting everything and not sleeping, but being sedated during her time in ICU gave her a much-needed chance to rest. Her liver kept shrinking every day and they started to wean her off intubation after seven days. They were initially concerned about her organs but thankfully, everything seemed to be working OK.
We could finally hold our baby again
When they took her tube out, we could finally hold our baby again. It was the most amazing moment. We hadn’t held her for nearly three weeks. It was a massive relief. A few days later, she went back to surgery for her central line but was straight back to the ward afterwards. And to add another spanner in the works, it turns out I had pneumonia and was banned from the ward for five days! I’d been struggling with a bit of chest infection but was so concerned with Rory, I ignored it. On the day I was allowed back in, Rory was moved back to the ward. It was a crazy, crazy time.
After six weeks, Rory was allowed to come home. Her bedroom was like a hospital room - it was spotless and we wouldn’t let her big brother in it. She had two cycles of chemo and then had an MRI and mIBG scan - there was no sign of cancer cells in the tumour, but still some in the liver. It was such good news that the tumour was no longer active and had shrunk away from her spine as it meant that there were no more mobility issues to worry about.
Rory didn’t need her fifth round of chemo. Her liver had shrunk back to normal so we just needed to ‘watch and wait’. In September 2019, the tumour was almost completely gone and Rory was classed as being in remission. She needed monthly scans, then regular bloods and a final mIBG in March 2020. She’ll need MRI scans every six months until she’s about five.
Our miracle baby
As a result of all the treatment, her immune system is completely shot, she was in hospital for three days with a cold! She’s semi-immune compromised but hopefully as she gets bigger and stronger, her immune system will develop more.
She also has some longer-term side effects including Horner’s Syndrome, which means she struggles to regulate her temperature, sweats on just one side and has a lazy eye. But again, as she grows, she may well be able to control her eye a bit more as the nerves get stronger. She also needs regular physio as her muscles are a bit weaker and her development is slightly delayed.
Five years on Rory rang the bell in May this year and has officially been declared cancer free, ready to start school this August.
“If you look at Rory now, you’d never know she’d been through so much. The doctors told us after everything happened that they thought she’d have a 30% chance of surviving her first month but now, she’s a wild, feisty little girl - our miracle baby. We are so very lucky.”
Thank you to Emily for sharing Rory’s story.
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