BRAVE Neive Warwick was diagnosed with a devastating disease at just five years old – after waking up screaming from nightmares.
To get through her gruelling treatment, she would belt out her favourite Oasis songs at her local social club karaoke events.
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Singing her heart out kept the brave six year old going and gave her something to look forward to each week.
Mum Sarah, 35, who lives in Leamington Spa, Warwickshire, said: “Neive adored singing Oasis. She knew all the songs off by heart.
“They were a really special band to her, and it really gave her a life.
“After she’d finished singing, she would come off stage with such a huge smile on her face. It gave her such a boost.”
Read more on rhabdomyosarcoma
Neive was five years old when she started suffering from nightmares in August 2022.
“She would wake in the night screaming,” said Sarah.
“I thought she was suffering from night terrors, but then she lost interest in doing everything that she loved.
“She was lethargic and didn’t want to eat anything. I was pregnant at the time, and she was desperate to be a big sister, but she just wasn’t herself.
“I took her to see the GP who couldn’t find anything wrong with her, but I instinctively knew something wasn’t right.
“For the next three weeks I went back and forth to the doctors – by now Neive was complaining of pain and I thought she was squinting. But they still said nothing was wrong.
“I started to google her symptoms and frighteningly a brain tumour came up on the search.
“I told the doctors what I had found, and eventually she was given a scan a few weeks later.
“It revealed devastating news. She had a tumour that was sitting at the back of her nose.”
It was a cancer called rhabdomyosarcoma, which is a childhood cancer that is in the tissue, and in this case, it was the tissue in the back of Neive’s nasal cavity.
At no point did I think she wasn’t going to make it. She had her baby brother or sister to meet, and she was so strong and incredibly determined
Sarah Warwick
She had to start chemotherapy straight away and then a special type of radiotherapy at the Christie Hospital in Manchester, called proton beam therapy, where the treatment is more targeted.
“At no point did I think she wasn’t going to make it,” recalls Sarah.
“She had her baby brother or sister to meet, and she was so strong and incredibly determined.
“I always thought she would beat this awful disease. It was going to be tough for her, but I never doubted that she would do it.
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“In-between chemotherapy treatments we would go to our nearby social club and Neive would get up on the stage and belt out her favourite songs – ‘Stand by Me by Oasis was her favourite one – and I was so proud of her as she stood up there, strong and feisty.
“She still went to school part time, despite being exhausted from the chemotherapy too. I was in total awe of her. The whole class rallied around her too.
“She was so excited to be a big sister too – and I knew she would be the best big sister in the world.
“She was so excited when I gave birth to Molly in January 2023.
“She cuddled her so carefully, she was incredible with her. She helped me change her and feed her, she didn’t want to leave her side.”
Shock return
In March last year, the doctors finally told Sarah that her daughter was cancer free.
She started maintenance chemotherapy, and Sarah thought they could finally put it all behind them and move on.
But then in June, Neive started to feel unwell. She had headaches and felt sick, and her appetite vanished.
Sick with fear, Sarah took her for a scan. It didn’t show anything, but she carried on getting worse.
Then in September an MRI scan showed that the cancer was back and had spread to her brain. There was nothing more the doctors could do to help her.
The signs and symptoms of rhabdomyosarcoma
Rhabdomyosarcoma is a type of soft tissue cancer that grows in the muscles of the body that we control.
The most common parts of the body for rhabdomyosarcoma to develop are the:
- Head and neck
- Bladder
- Vagina
- Arms and legs
- Central part of the body
Sometimes rhabdomyosarcoma is found in a limb, in the chest or in the abdominal wall.
If the tumour is in the head or neck area, it can occasionally spread into the brain.
Rhabdomyosarcoma is more common in children and teenagers than in adults.
Children with certain rare genetic disorders, such as Li-Fraumeni syndrome, have a higher risk of developing rhabdomyosarcoma.
Symptoms of the cancer depend on the part of the body that is affected.
Rhabdomyosarcoma in the head or neck may cause:
- A lump that you can see or feel, which may or may not be painful
- A blockage and discharge from the nose
- Changes in swallowing or hearing
- The eye to appear swollen or pushed forward
In the tummy, symptoms include:
- Pain in the tummy
- difficulty pooing (constipation)
If rhabdomyosarcoma develops in the bladder, vagina or testicles, it might cause:
- Blood in your pee
- Difficulty peeing
- Needing to pee more frequently
- Vaginal discharge
- Swelling in a testicle.
“We couldn’t believe that it was back,” said Sarah.
“She was being the best sister to Molly – she said she would always look after her and they would be sisters forever.
“But the cancer was too aggressive. The three of us sat on Neive’s bed and read books and films together, with my mum too, who was there every step of the way for us.
“Molly would sit there stroking her hand, and we had a cast of Neive’s hands made in plaster, then given a bronze coating so that Molly would be able to hold her sister’s hands forever.
“Neive passed away in October 2023 after the bravest fight I have ever seen.”
Trust your gut
Sarah says: “I wanted to let other mums know that you must trust your instincts as a mum – and ask the questions to the doctor. Don’t turn a blind eye to childhood cancer. It’s rare but it does happen.
“We have been supported by an amazing charity called Alice’s Arc, who are fighting for more research into childhood cancers, and more advances in treatment, as at the moment these children are being treated with drugs that were available 40 years ago. Treatment hasn’t moved on and it needs to.
“And when Molly grows up I’ll make sure she carries on knowing all about Neive, and what a wonderful big sister she was.
“I always show her photos, and she knows its her sister, and we listen to the videos of her singing her Oasis songs – especially ‘Stand by Me’ as that was her favourite.
“She was only able to be here for her for nine months, but it was an incredible nine months, and I’m so glad she got to meet Molly and spend the time she did with her.”
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