While the UK headed into lockdown in the spring of 2020 Rebecca Parks was about to embark on what should have been one of the most exciting times of her life. Even as the country headed into a bleak couple of years she took comfort in the idea she’d be able to bring up her newborn son Luca and his brother Zac, then three, in their loving family home just outside Aberystwyth with few distractions.
So dedicated was she to giving them the best childhood that she could Rebecca, 27, had already quit her job as a nursery nurse to spend as much time as possible with her boys. “I know we were going into lockdown but I was comforted by our little bubble,” she affectionately remembered of stress-free times which she’d give anything to go back to. “Everything was perfect. But then it turned upside-down.”
What Rebecca and her partner Paul Evans, 36, have been through most parents couldn’t begin to comprehend. She’s sat in a small room twice with doctors informing her that her baby boy Luca had stage four cancer and likely had only months to live and yet he continues to bounce back.
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“He’s a little miracle,” she tells WalesOnline, using a term far too often thrown about but which in Luca’s case is so apt. “He’s happy, cheeky, and he's always smiling,” she adds proudly. “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 Rebecca and Paul noticed Luca wasn’t able to use his left arm. “He couldn’t even lift it up – it was so weak,” she recalled. “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. What happened next was “completely shattering”, Rebecca said. The date they received the news of Luca’s true condition on June 23, 2020, will forever be imprinted in her mind.
“He turned four months old and off we went to Leeds but before the operation the doctors decided to do an MRI scan,” she continued. “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.”
While Rebecca says the team at Noah’s Ark were “fantastic” in supporting her and her family nothing could have prepared them for what they were told next. “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 immediately moved from the surgical ward at Noah’s Ark to the oncology ward where he had his first dose of chemotherapy on July 11, 2020. “He only had one dose and he became really quite quickly critically ill and had a seizure,” Rebecca explained. “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, one of three children in the whole of the UK living with the inoperable condition, did get through that weekend and through the following year – albeit often very ill. “We’re just trying to keep it the same size with the chemotherapy until he’s old enough for other forms of treatment,” Rebecca said calmly.
“There aren’t many options for children battling cancer – it’s a waiting game. That’s why we want to do this – to raise awareness that more research needs to be done to find ways to help young children with cancer.”
Luca is the first child in Wales to be given larotrectinib – a relatively new drug which he has reacted much better to than his previous medication. Rebecca is in no doubt that it is saving her son’s life.
“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. He'd lost his hair, he'd lost his appetite, lost weight, he was so sick and there was nothing we could do about it. The larotrectinib has given Luca the chance to lead a relatively normal life.
“We’re so grateful this drug was available and we need more medication available for young people. Luca is too young for radiotherapy so it’s all about getting him through until he is old enough for other forms of treatment.”
His life has been a constant battle for survival and while he is now at his healthiest he has ever been in his short life there remains a chance his tumour could still grow. In April this year he was urgently transferred into intensive care at Noah’s Ark after scans showed his tumour had swollen. Doctors again told Rebecca “things could go either way”.
"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,” Rebecca continued. “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.
“His left side is still very weak. He’s having a lot of physiotherapy. After Luca got critically ill in April he has been left needing intermittent catheterisation as the tumour has affected the nerves in his bladder. His left arm doesn't work as it should but he just gets on with it – he uses it to prop toys up and support things.
"The appointments are never-ending. Luca has an audiology appointment every three months – the chemotherapy has left him with high-frequency hearing loss. He then has physiotherapy, hydrotherapy, occupational therapists, nurses coming to the house. Every six weeks we are seen by his oncology team in Cardiff and every three months he has an MRI in Cardiff. But we’d do it all again in a heartbeat if it means he is still here with us.”
She thinks back to his birth and to a time where she’d envisaged life would be so much easier. “He was an easy birth and a very contented little baby. That was until we noticed his left arm.
“It’s difficult, still difficult. But we live with hope. Without hope we don’t have anything do we?
“I hope there will be advances in cancer treatment and one day there will be a cure for Luca. Until then we just do our best and hope he continues to prove everyone wrong.”
Rebecca and her family have shared their story to raise awareness of childhood cancer and the importance in the advancement of medicine she speaks of. September is Childhood Cancer Awareness Month.
“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,” she said. “Fewer than 3% of cancer research in the UK is directly dedicated to children and yet cancer is the biggest killer of children in this country.
“Children with cancer are given chemotherapies that are actually meant for adults. Luca continues to suffer with side effects from his chemotherapy,. We desperately need treatments that are much less invasive for children's bodies. We need to keep talking about it so that we can expand that research and ultimately find better treatment for our children who are fighting this disease.” You can follow Luca's story on his Instagram page here.
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