Neive Louvaine Warwick

Neive was 5 years young and had just started year 1 at school when she was diagnosed with Parameningeal  Rhabdomyosarcoma. She was in the high risk category with the RMS located in the pterygopalatine fossa with intracranial extension. Her tumour was localised.

Neive was a kind, loving, devoted, caring, funny, enthusiastic, energetic and active little girl with a real sense of adventure. She had spent the summer of 2022 on many holidays, day trips and spent precious time with her family and friends. Life was wonderful. 

In late August 2022 Neive started to have disturbed nights waking up shouting and distressed. This then progressed to headaches, lack of appetite, left sided facial pain not being herself at all.

After 3 weeks of countless and agonising back and forth visits to the GP and PAU they finally performed an MRI. We had pushed for this as we felt the facial pain was a real concern and progressively getting worse despite findings unremarkable prior to this.

A mass was discovered. Rhabdomyosarcoma.

Neive was blue lighted to Birmingham Children’s on 11th September 2022.

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. She tolerated this reasonably well despite having a general anaesthetic everyday for 6 weeks to undergo proton beam treatment. Before being put to sleep each morning, Neive would play one of her favourite songs and she would often go down to the theatre on her own (her choice), that’s how truly incredible she was. She was a force. Her strength and determination was admirable. She even found the energy to enjoy the hotel treadmill and karaoke machine in the hospital in small bursts. She never, ever, gave in.

Neive finished Proton treatment in January 2023 and a few days after arriving back home her little sister, Molly was born. Molly was such a precious gift to all of us but especially Neive who adored her.

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Neive’s end of intensive treatment scans in March 2023 were clear other than some residual tissue which they assured us was common. Neive was well, she was gaining weight, her hair was growing back and she was managing all day at school. Life was wonderful again.

She commenced maintenance chemotherapy in April 2023 full of hope and determination. Cyclophosphamide was combined with IV Vinorelbeine. This bought about 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 was loving every second of her life. 

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. Neive had several lumbar punctures and  MRI’s between June – August but no cancer cells were detected. The relapse was laying undiscovered somehow .

Heartbreakingly 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 in a new location. Her primary tumour site remained stable. 

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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.

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 me. Neive would love to tend to her beloved Cosmos or California poppies and would always be on hand to help water them. When out walking Neive would pinch a few stems of wildflowers and always gift them to me.