Neive Louvaine was a little girl with an infectious spirit and a love for adventure. Diagnosed with high-risk localized parameningeal embryonal rhabdomyosarcoma, Neive’s fight against cancer began just as she was embarking on the exciting journey of starting school at age 5.
Full of life and energy, Neive was known for her enthusiasm, her love for animals, her musical talent, and the deep bond she shared with her family, particularly with her beloved pet lurcher, Bailey, and the family hen, Dorothy.
In late August 2022, Neive began experiencing strange symptoms that soon grew more severe. She had disturbed nights, headaches, lack of appetite, and subtle facial palsies that worried her parents. Initially dismissed by doctors as something minor like viral infections or growing pains, Neive’s symptoms continued to worsen until her parents insisted on further investigation.
An MRI on September 9, 2022, revealed the devastating truth: Neive had a tumor in the pterygopalatine fossa and nasopharynx area, with intracranial extension. The tumor was deemed inoperable due to its location, and that moment would forever change Neive’s life and the lives of her family.
Immediately, Neive began her treatment for the aggressive cancer, starting with chemotherapy. She endured 9 rounds of IVA chemotherapy as part of the FaR RMS trial at Birmingham Children’s Hospital, followed by 6 weeks of Proton Beam Therapy at The Christie in Manchester.
Despite the difficult treatments, Neive showed incredible strength, even managing to endure daily general anesthesia for her treatments. Her resilience earned her the nickname “Miss Sassy Pants” because of her ability to fight through sedation and maintain her spirited nature.
Neive’s strength and determination during her treatments were awe-inspiring. Even as she endured the hardships of cancer and its treatment, Neive maintained a sense of joy.
She found ways to enjoy life, whether it was by playing with her microphone, singing her favorite songs like “Stand by Me” or “Karma Chameleon” from her hospital bed, or getting on the hotel treadmill and enjoying a karaoke session. Despite the severity of her condition, Neive embraced each day with a sense of purpose and a passion for living.
By March 2023, Neive’s scans showed promising results—her tumors appeared to have shrunk. But the challenges were far from over. In April 2023, Neive began maintenance chemotherapy, but complications arose, and her blood count dropped significantly. The treatment had to be adjusted, but after some time, she regained her strength and returned to enjoying family holidays, theme park trips, and her birthday celebrations.
Sadly, in June 2023, Neive’s symptoms took a sudden turn for the worse. She began experiencing severe headaches and vomiting, which mirrored the symptoms she had shown before her initial diagnosis. After numerous visits to oncology, Neive underwent several lumbar punctures, and although her cerebrospinal fluid (CSF) came back clear of cancer cells, her condition continued to deteriorate.
In July 2023, an MRI revealed dural enhancement in Neive’s brain and spine, but doctors initially dismissed this as a result of the repeated lumbar punctures. It wasn’t until August 2023 that Neive suffered from multiple seizure-like fits, leading to the decision to fit a ventriculoperitoneal (VP) shunt to relieve the pressure on her brain.
Despite the relief from the shunt, Neive’s symptoms persisted. She developed a squint, double vision, and facial weakness, which were eerily similar to the symptoms she had experienced upon her initial diagnosis. Unfortunately, the cancer had returned aggressively, and in September 2023, Neive’s end of treatment scans confirmed the presence of widespread leptomeningeal disease, a complication of her rhabdomyosarcoma.
With no curative treatment options remaining, Neive was placed under palliative care, and her family chose to take her home to be surrounded by the love and comfort of those closest to her. They spent precious time together at places Neive loved, including trampoline parks, the garden, and her favorite library. Her family cherished every moment, singing and dancing to her favorite songs, as Neive’s spirit continued to shine through, despite the ongoing pain.
Sadly, on October 24, 2023, Neive passed away peacefully, surrounded by her family. She was just 5 years old, but her legacy will live on in the hearts of everyone who knew her. Neive’s story, from her vibrant personality and love for life to her courage in the face of unimaginable pain, has left an indelible mark on her family and everyone who had the privilege of witnessing her strength.