Neive Louvaine Warwick

 Neive was 5 years young and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal  Rhabdomyosarcoma. The tumour was located in the Pterygopalatine fossa with intracranial extension. Neive was an energetic, active, happy and adventurous little girl prior to this and had never stepped foot in a hospital since she was born. There were no warning signs of what was to come. In late August 2022 Neive started having disturbed nights waking up shouting and in a dream like state which then progressed to headaches, lack of appetite, left sided facial pain, a squint, subtle facial palsy’s and generally just not being herself.

After 3 weeks of agonising back and forth visits to the GP and local hospital, they finally agreed to perform an MRI of head as we felt the facial pain was a real concern and progressively getting worse. Prior to this we were told it was a water infection, growing pains, viral etc. Oh how I wish it was that.

Neive’s MRI discovered a 5cm tumour in the Pterygopalatine Fossa area with intracranial extension and deemed  inoperable because of its complex location. Neive was being treated to cure and there was always hope she would overcome this and treatment would be successful.  That’s the moment her and our lives changed forever.

Neive went on to have 9 rounds of IVA chemotherapy at Birmingham Childrens Hospital on the FaR RMS trial and then 6 weeks of Proton Beam Therapy at The Christie in Manchester at 59.4 gray’s. She tolerated this reasonably well despite having a general anaesthetic everyday for 6 weeks and undergoing radiation treatment. Before going to sleep each day for radiation Neive would play one of her favourite songs to fall asleep to and she would often go down to the theatre on her own, that’s how truly incredible she was. Her strength and determination was admirable during this period 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. Although this time was challenging we also had some of our most treasured memories as a family in Manchester and met some lovely people who we now call friend’s. 

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 Vinorelbeine. This had some challenges and caused her blood count to drop lower than expected, 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, Neive’s birthday party, trips to West Midlands safari park, Drayton Manor & Blackpool. Neive also returned to school for longer days and went to lots of parties. Her beloved hair started to grow back which Neive was delighted about and she took her hat off for the first time in months.

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 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 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? 

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 and not the presence of tumour.

As the weeks went on, Neive continued to decline and one evening in August 2023 she had 3 x 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 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 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.

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. We enjoyed time at one of Neive’s favourite places; the trampoline park, we hired a hot tub for the weekend in our garden, we enjoyed watching Neive’s favourite films; BFG, Minions, Christmas Chronicles, Mr Beans 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) we had snacks in bed and read lots of books. She went to Jephson Gardens to feed the ducks 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 thing to do. 

As the weeks went on Neive began to deteriorate and fell into a deep peaceful sleep. Neive felt the warm sunshine shine on her through the window for the last time in late October and on 24th October 2023 at 7.07pm Neive was set free from this terrible disease and  drifted off peacefully with her Mum lay next to her holding hands. Neive is at peace now and her soul can rest. We will love you, talk about you, celebrate you and miss you every second for the rest of our lives. 

“Nu night diddly doo. I love you, god bless you.”

~

Neive’s Arc logo represents a love Neive and our family had for blackberry picking. From a young age, Neive would spend time with me and her Grandad Tim picking blackberries in our garden and at the meadow. She would love to then help make an apple & blackberry crumble with her Nanny Shirley and couldn’t wait to dish everyone a bowl of what she had picked. Neive loved picking the blackberries so much so that she named herself and me (Mum) “The Blackberry Sisters ” and it stuck. Whenever I walk past a blackberry bush now I think of Neive and all the happy summer days we spent in the outdoors enjoying picking the juiciest blackberries.

“Blackberry sisters forever”.

Neive had a deep rooted love for animals and her main logo image is replicating her beloved pet lurcher “Bailey”. Bailey was always by Neives side her whole life and during treatment he was always there with his head resting on her lap or shoulder. Bailey provided a love and comfort to Neive that nobody else could and I know they adored each other. Neive was also very fond of our pet hen’s who lived in our garden, a particular favourite being “Dorothy”. Dorothy was the most gentle hen with a real character and would happily sit on Neive’s lap being stroked. When Neive was younger she would spend long dreamy days in the garden with Bailey and Dorothy, even sharing her tea with them most of the time. Neive loved the animals in her life and they bought great joy to her and us. She had a compassion for animals and the ability to communicate with them on a deep magical level.

Neive also loved to sing and anyone who knew Neive knew that when she had a microphone in her hand was when her real passion for music and performing came out. She rocked! She would sing Oasis regularly, knowing all the words and a particular favourite being “Stand by me” and “She’s Electric”. Neive was a confident performer and regularly took part in the open mic events at our local club and even performing to an audience there during treatment. Even in hospital Neive would be heard before you could see her, she would be blasting out “Monkey Man” by The Specials or “Karma Chameleon” from her hospital bed. Music was Neive’s saviour in the darkest of times and her little sister Molly regularly enjoys watching videos of her incredible big sister sing.

Neive also adored flowers and shared this passion with her Mum, Sarah. Neive would love to tend to her beloved Cosmos or California poppies and would always be on hand to help water them and sow new seeds. When out walking Neive would pinch a few stems of wildflowers and always gift them to her Mum. Neive knew the importance of growing pollinator friendly plants and would marvel at all the bee’s and butterflies coming to her garden. Sarah, Neive’s Mum always said she would find Neive when she looked at the flowers and that’s where she finds Neive now, her spirit and soul amongst the flowers.