Neive's Rhabdomyosarcoma Story

An active, happy little girl

Neive was 5 years old and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal Fusion-negative Rhabdomyosarcoma. Before this, she was an energetic, active, and happy-go-lucky little girl who had never stepped foot in a hospital since she was born. In late August 2022, she began having disturbed nights, which progressed to headaches, a squint, double vision, subtle facial palsies, and generally just not being herself.

Agonising wait for diagnosis

After three weeks of agonising back-and-forth visits to the GP and local hospital, they finally agreed to perform an MRI of her brain, as we felt she was displaying signs of a brain tumour based on our research. The MRI revealed a 5cm tumour dominating the pterygopalatine fossa area with intracranial extension. The tumour was deemed inoperable due to its complex location. That’s the moment Neive’s and our lives changed forever.

Treatment begins

Neive went on to have nine rounds of IVA chemotherapy at the local Children’s Hospital on the FaR RMS trial, followed by six weeks of proton beam therapy at another hospital. Despite the toxicity and painful skin reaction to the protons, Neive tolerated the higher grays of proton reasonably well. Her strength and determination were admirable, and her will to live shone through brighter than anything. She even found the energy to enjoy the hotel treadmill and karaoke machine in the hospital. However, her appetite was severely affected, and she became solely reliant on her NG tube for nutrition and hydration. Despite the challenges, we also had some of our most treasured memories as a family here, and Neive still found fun in making new friends and exploring the new city we found ourselves in. Neive would always seek the magic in every situation, finding the good despite the darkness that surrounded us.

A clear scan

Neive’s end-of-intensive-treatment scan in March 2023 was clear except for some dead residual tissue, which they assured us was common. She commenced maintenance chemotherapy in April 2023, combining oral Cyclophosphamide and IV Vinorelbine. There were some challenges, including a drop in her blood count that required a dose reduction, but after this, normal life resumed for her.

Family memories

We enjoyed family holidays to The New Forest, Brean Sands, and Blackpool. We spent time enjoying a wish at Legoland, and Neive even started participating in open mic sessions at our local club again, singing her beloved Oasis, The Human League, and The Pogues. Neive’s birthday party was another great time where she had a party with all her friends, including a sweet cart, tattoos, and a ride in cars. We made it to West Midlands Safari Park and Drayton Manor, and Neive also returned to school for longer days and excelled despite the time she had missed. Her beloved hair started to grow back, which Neive was delighted about, and she took her hat off for the first time in months.

A turn for the worse

In June 2023, things took a turn for the worse for Neive. She became unwell and generally not herself, starting to display symptoms that she had presented with upon her diagnosis. She began having severe frontal headaches accompanied by nausea and vomiting, disturbed nights, and was withdrawn from everything she used to love doing. This went on for a few weeks, and after numerous visits back and forth to Oncology, they decided to perform a lumbar puncture as they feared Neive might be relapsing. The lumbar puncture provided immediate relief to Neive’s paralysing headaches, and it was noted that her opening pressures were 54, which was severely high. Her CSF testing came back clear of any cancer cells.

Going round in circles

After a week, the headaches crept back in along with the nausea and vomiting, and again she had a lumbar puncture performed to relieve the pressure. CSF was tested again and yet again, clear of any cancer cells. This went on for a few months, with lumbar punctures typically every 10 days and gradually things getting worse more quickly. She was started on various medications to help reduce her CSF, such as Acetazolamide and Furosemide, as they believed she could be overproducing, but this was all to no avail. We felt like we were going round in circles. Neive wasn’t getting any better, and neither were the high intracranial pressures and symptoms.

Misdiagnosis and further symptoms

Eventually, they diagnosed Neive as having Idiopathic Intracranial Hypotension, although she wasn’t typical as it predominantly affected middle-aged, obese women. This didn’t sit right with me, and I never truly believed that was what Neive was suffering from. There had to be a cause for such a slight little girl who was underweight to have such high pressure and feel so unwell. Interestingly, an MRI Neive had in July 2023 showed dural enhancement of her brain and spine, but this was believed to be down to the repeated lumbar punctures and not the presence of a tumour.

Emergency intervention 

As the weeks went on, Neive continued to decline, and one evening in August 2023, she had three seizure-like fits in a row. It was then that the neurosurgeons intervened and rushed her to theatre to have a ventriculoperitoneal shunt fitted to save her life and relieve her brain of the high pressure. We were pleased that finally, she might be able to return to some sort of normality and be free of the constant headaches and vomiting which couldn’t be controlled. This wasn’t the case. Although the headaches were relieved, the other symptoms persisted, and she also developed a squint, double vision, and left-sided facial weakness (all the symptoms she presented with upon her diagnosis). We were baffled as to what was causing this (although I had my suspicions, sadly) as all the testing of her CSF had come back clear of tumour along with MRI scans with the exception of the dural enhancement.

The heart-breaking reality

Sadly, Neive’s end-of-treatment scan in September 2023 showed widespread leptomeningeal disease of her Rhabdomyosarcoma. The high pressure was due to this all along, and the cancer had returned aggressively. Her primary tumour site remained stable. There were no curative treatment options left for Neive, and we took her home on palliative care, surrounded by everyone and everything she loved in life.

Neive’s favourite places

We enjoyed time at one of Neive’s favourite places, the trampoline park. We hired a hot tub for the weekend in our garden, drew pictures together, and enjoyed watching Neive’s favourite films: BFG, Minions, Christmas Chronicles, Mr. Bean’s Holiday, and Benidorm. We sang and danced on Neive’s beloved microphone to her favourite songs: “Summer of ’69,” “Don’t You Want Me Baby,” and “Stand by Me.” We cuddled (‘cutched up’ as Neive would say), had snacks in bed, and read lots of books. She visited Hatton Country World and fed the goats and cuddled the guinea pigs. She went to Jephson Gardens to feed the ducks and pigeons for one last time, this was one of Neive’s favourite things to do, and also went to the library to use the computer, another favourite activity.

Neive’s final moments

As the weeks went on, Neive began to deteriorate and fell into a deep, peaceful sleep. I would lay with Neive during the days and tell her all about the wonderful times we had had over the years, how so very proud I was to be her Mum, and that she didn’t need to keep battling anymore. Now was her time to rest and be peaceful. Neive felt the warm sunshine shine on her beautiful golden hair through the window for the last time in late October, and on 24 October 2023, at 7:07 pm, Neive was set free from this terrible disease and drifted off peacefully to heaven with me laying next to her, holding hands.

Surrounded by unwavering love

Neive left this world the same way she entered, surrounded by unwavering love, adoration, and the presence of Me, Nanny, James, Molly her little sister, and Ju Ju. Neive is at peace now, and her soul can rest. We will love her, talk about her, celebrate her, and miss her desperately every second for the rest of our lives. We will, as a family, continue to raise vital funds and awareness to combat childhood cancer and never give up, just like Neive didn’t.

“Nu night, Diddles. I love you, God bless you.”

Sarah, Neive’s mum, July 2024

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