THE first few years of a child's life are supposed to be full of fun, laughter, and learning - but one little girl from Gwent is facing a battle tougher than many of us will ever have to face, at just three years old.
Sian Savage, 27, and partner Rhys Norville, 32, took three-year-old daughter Rose for a routine doctor’s appointment last year - and found their lives turned upside-down.
Rose had been suffering with tiredness, sickness and headaches for over a year when they were sent to the Grange Hospital for a CT scan in November 2023 - which revealed a brain tumour.
An emergency trip to Noah’s Ark Children’s Hospital in Cardiff followed, where further tests diagnosed Rose with a posterior Fossa Ependymoma, a common form of brain cancer that is usually found in young children, with the family later told it was cancerous.
Ms Savage said the tumour was particularly scary as it was “wrapped around her brain stem and the top of her spine”.
After being rushed into surgery on December 4 to relieve pressure on her brain, planned tumour removal surgery went ahead on December 6, which led to a bleed, which, despite being got under control, left Rose unable to talk, eat or move for three days.
Ms Savage recalled: “After her surgery it was very scary. It was like her soul wasn't there anymore and she was just empty. She was completely lifeless.
“After a week had passed after the surgery, we were finally able to hold her for a short period of time which truly meant the world to us.
“A week after the surgery, we finally heard her chuckle for the first time which resulted in both of us in tears.
"She had also started being able to move her right side slightly, however not for long.”
On Christmas Eve, Ms Savage was finally able to help Rose with her feeding tube, allowing her to make “a solid difference” to her daughter.
She said: “We never gave up even when we felt the world was crashing down around us. I suffered two major panic attacks, but we still stayed strong for Rose as she needed us more than ever.”
It took Rose three weeks post-op to finally say her first word - "mum" - and she finally began to drink again on January 3.
Ms Savage said the worst part was seeing how scared Rose was after surgery, remembering it as “heart wrenching”.
For Rose’s parents, it has been a very emotional and unforgiving time, with both wishing they could swap lives with “our beautiful girl”.
Ms Savage continued: “Our days were filled with doctors coming all throughout the day, physiotherapists having sessions with her, dieticians reviewing her daily, speech and language coming for daily sessions, scheduled play time, walks outside to get her fresh air, neurosurgeons doing daily visits as well as oncology.”
Rose suffered nightmares, got her limbs stuck down the side of the bed and has woken up screaming in pain or choking on her own saliva.
With this in mind, her mum has been left to wonder how people cope.
She said: “If it wasn't for Rhys giving me breathers, I would’ve been a mess. We never imagined life this way and both of us would do anything to swap places with our beautiful girl.”
Despite everything the family have been through, it is Rose’s improvements that have kept them going, along with the hope that they will make it through.
The family are now in Manchester, where Rose is receiving proton beam therapy, which she is currently responding to well.
Ms Savage added: “Seeing her making these improvements make it all worth it. She finally said ‘hi’ and ‘bye’ clearly while waving on January 1, and is now able to take a few supported steps.
"This may not seem like much to some, but to us it’s everything.
“After surgery she couldn’t do anything and was in agony all the time – it was like she was gone, her personality stripped away, and she was empty. Taking your child's life in your hands while fighting to make sure she gets the best care really takes its toll on you.
“Now she’s got her spirit and her smile and her laugh back, including her sense of humour.
"We know this journey is far from over and the future is so unknown as Rose may never be able to do everything she used to, but that’s okay because we have hope, and we will do everything we can to make sure she has a full, loving and happy future.”
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