A mum who was told she had nothing to worry about after raising concerns over her baby boy's health was then told he had just 'months to live'.
Rebecca Parks was a new mum when the UK went into lockdown. She was comforted by the the idea she would be able to bring up her newborn son Luca and his brother Zac, then three in their loving family home.
The 27-year-old had already quit her nursery nurse job to spend more time time with her boys.
Rebecca told WalesOnline: “I know we were going into lockdown but I was comforted by our little bubble.
“Everything was perfect. But then it turned upside-down.”
She and her partner Paul Evans, 36, have been through most parents couldn’t begin to comprehend.
Doctors informed her that her baby boy Luca had stage four cancer and was likely to have only months to live, but he still continues to bounce back.
She said: “He’s a little miracle. He’s happy, cheeky, and he's always smiling.
“He’s just started nursery. You’d look at him now and you just wouldn’t know what he’s been through and that he is still fighting for his life every day.”
At five weeks old the couple noticed Luca wasn’t able to use his left arm.
She said: “He couldn’t even lift it up – it was so weak.
“He was diagnosed by our local hospital with Erb’s palsy.
"They told me there was nothing to worry about and he’d be seen in four months’ time in Leeds by a specialist who deals with those cases.”
The condition is a nerve issue in the shoulder and arm that results in loss of muscle function, usually following a particularly difficult birth.
But what happened next was “completely shattering” for the parents,
And the date they were told Luca’s true condition on June 23, 2020, will forever be imprinted in her mind.
She said: “He turned four months old and off we went to Leeds but before the operation the doctors decided to do an MRI scan.
“It showed he had a large spinal cord tumour around seven centimetres in length.
“Due to Covid restrictions I was sitting in the room on my own when they told me, miles and miles from home.
"I hadn’t fully comprehended what I’d been told. I wasn’t sure I knew really what was going on.
“Paul was back home. My world just felt like it had shattered. Time stood still and my heart felt like it had broken into a million pieces.
“Paul was going to drive up and get us but the doctors felt it was so urgent we were blue-lighted down to Cardiff to Noah’s Ark Children’s Hospital. It was four hours on a boiling hot day.
“I’ll never forget that journey. I was holding Luca so tightly. It was the worst four hours.”
Noah’s Ark were “fantastic” in supporting her and her family, but nothing could have prepared them for what they were told next.
Rebecca said: “They sent him for another emergency MRI and four days later they told me it was stage four and inoperable and that he’d possibly only have months to live.
"We were in disbelief. I desperately wanted them to be wrong.
"I’d only just lost my dad to cancer in February 2019 and now we were facing this horrific journey again – this time with our newborn baby."
Luca was moved from the surgical ward to oncology where he had his first dose of chemotherapy on July 11, 2020.
The mum added: “He only had one dose and he became really quite quickly critically ill and had a seizure.
“He had another MRI on the 14th which showed his tumour had actually widened in all directions and was leaving very little room for circulation.
"The oncologist took us to a small, quiet room where she told us we’d need to prepare for the worst and to take Luca home. They didn’t think he’d make it through that weekend.”
Luca is the first child in Wales to be given larotrectinib – a relatively new drug which has been better than his previous medication and she is in no doubt it is saving Luca's life.
She said: “There haven’t been many treatment options for him. He really struggled for a year with the chemo he was having until August 2021.
“He was spending more time in hospital than at home. It was no life for a baby.
“We’re so grateful this drug was available and we need more medication available for young people."
In April he was transferred to intensive care after scans showed his tumour had swollen and Rebecca was told: “things could go either way”.
She said: "The heart-breaking truth is that Luca is remaining stable for now but we are fully aware that one day his treatment options may just run out.
“He spent the whole of April in hospital and again lost all his weight and he had to learn to walk again. It is unbelievable how he continues to come back.
“He is on regular painkillers for the muscle spasms he gets.
"The tumour isn’t shrinking with the medication he’s on but it’s remaining as it is and that means at the moment he’s able to stay at home, he’s not having severe sickness as he was, his hair is back, and he’s putting weight back on.
The family have shared their story to raise awareness of childhood cancer and the importance in the advancement of medicine
Rebecca added: “Cancer can happen to anyone, it doesn't matter how old you are, we need to raise awareness so that one day all of the children fighting cancer will be given a cure instead of a death sentence."
