Neive Warwick

Neive, aged 5, was diagnosed with embryonal/fusion negative parameningeal rhabdomyosarcoma, in August 2022. Her care is led from Birmingham Children’s Hospital and she has endured nine rounds of intensive chemotherapy & proton beam therapy. She started maintenance chemotherapy in April 2023 but sadly her end of treatment scans in September 2023 showed disease progression in the brain and spinal fluid. Neive went home on palliative care to be with her family. She passed away on 24th October 2023.

Neive's Story...

Neive was 5 years old and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal Fusion negative Rhabdomyosarcoma. She was an energetic, curious, happy little girl prior to this and had never stepped foot in a hospital when in August 2022 she started having disturbed nights, headaches, a squint, subtle facial palsy’s and generally just not herself.

After 3 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.  Prior to this we were told it was a water infection, growing pains etc etc. Neive’s tumour was discovered during the MRI, a 5cm tumour. It wasn’t in her brain but in the Pterygopalatine Fossa area and inoperable because of its complex location. That’s the moment her and our lives changed forever.

Neive went on to have 9 rounds of IVA chemotherapy at Birmingham Childrens Hospital and then 6 weeks of Proton Beam Therapy at The Christie in Manchester. She tolerated this reasonably well despite the toxicity and painful skin reaction to the protons. Her strength and determination was admirable during this period and her will to live shone through brighter than anything.

Neive’s end of intensive treatment scans in March 2023 were clear other than some residual tissue which they assured us was common. She commenced maintenance chemotherapy in April 2023 combining oral Cyclophosphamide and IV Viborelbeine. This had some challenges and caused her blood count to drop lower than expected and she had to have the dose reduced but after this hiccup life resumed for her, we enjoyed family holidays, theme parks trips, open mic sessions and plenty of parties – lots of parties!

It was in June 2023 that things took a turn for the worse for Neive, she became unwell and generally not herself and started to display symptoms that she presented with upon her diagnosis. She began having severe headaches accompanied by nausea and vomiting, disturbed nights and withdrawn from everything she use 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 may be relapsing. The lumbar puncture provided immediate relief to Neive’s paralysing headaches and it was noted that her opening pressures were 54 – severely high. Her CSF testing came back clear of any cancer cells.

After a week the headaches crept back in along with the nausea/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, 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 Acetizolomide and Furosemide 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. What was going on? Could they missing something?

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 with, there had to be a cause for such a slight little girl who was underweight to have such high pressure. 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 puncture’s not the presence of tumour.

As the weeks went on, Neive continued to decline and one evening in August 2023 she had 3 x seizures 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 may 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 along with left sided facial weakness (all the symptoms she presented with upon her diagnosis.) We were baffled as were the Oncology team as to what was causing this (although I had my suspicions) as all the testing of her CSF had come back clear of tumour along with MRI scans with the exception of the dural enhancement.

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. The cancer has returned and aggressively. Her primary tumour site remained stable. There are no curative treatment options left now and Neive is received palliative care at home surrounded by everyone and everything she’s loved in life.

On 24th October 2023 at 7.07pm Neive drifted off peacefully to heaven with her Mum lay next to her holding her hand talking to her about how she will be reunited with her beloved pet dogs Bailey & Billy and how she will have her beautiful plaited hair back again. Neive is finally at peace and her tiny body can rest now. We will love you and miss you every second for the rest of our lives.

What was your journey with cancer like?

Throughout Neive’s journey she has fought valiantly, courageously and never been phased by any of it although she has been dealt a cruel hand in life. She became a big sister to Molly in January 2023 and she has taught her so much in such a short space of time, even now we can see Neive’s light and love within Molly and I just know Neive will live on within her little sister.  Neive has sang, danced and laughed but most of all she’s continued her love of life and that’s what we plan to do with the limited time we have left now with our precious, Neive.  Neive will be remembered for her love of animals and flowers, her beautiful singing voice, her perfect face, her lovely plaited hair she was so fond of and her kindness to all. We’ll love her, we’ll sing and we’ll dance, until the very end.

What changes would you like to see for children diagnosed in the future?

From June 2023 – August 2023 Neive was displaying signs of a relapse but all the attempts to discover this pathologically came back clear and this is one thing I can’t accept or quite understand. Her MRI’s were clear and CSF findings clear other than the noted high intracranial pressure and dural enhancement. The cancer took months to present itself through current screening mechanisms, although the symptoms and signs were there. Could something have been done preventatively at the point of her symptoms presenting again and high IC pressure/dural enhancement? I don’t know but this is one thing I would like there to be more research into and more knowledge to be able to tackle early and improve outcomes for our precious children.

I would also like to see more curative options available for children at the point of relapse with particular research into why relapse occurs and having the knowledge to tackle it more effectively for the long term.


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Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £3,500,000