A Scots mum has told of her family’s ordeal after her daughter fought an aggressive, life-threatening brain tumour during the height of the pandemic.
Elaine Paterson’s eight-year-old daughter Katie was diagnosed with medulloblastoma after experiencing vomiting, clumsiness and pain in her back in December 2020.
The 39-year-old described how she felt “complete numbness” and then fear unlike anything she had experienced before when the family, from Airdrie in North Lanarkshire, received the devastating news.
Elaine, who is a deputy head teacher, said: “Towards the end of November, Katie started being sick and was really lethargic. Her symptoms got worse and she started suffering with excruciating pain in her back. We called the out-of-hours doctor and Katie provided a urine sample, which showed there was an infection, so she was given antibiotics.”
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However, as Katie’s sickness began to subside, Elaine and her husband Graham, 42, began to notice more worrying symptoms in their daughter.
She said: “When she stood up, she would hesitate before walking. She was putting her arms out to the side to navigate and she was becoming really clumsy. When I asked her if she felt dizzy, she said: ‘it’s all black around the sides.”
On December 14, Katie went to see a paediatrician at Wishaw General Hospital.
She had a CT scan, which revealed a large tumour at the back of her head.
The mass had blocked the flow of brain fluid, which was causing hydrocephalus and she had to be blue-lighted to Queen Elizabeth University Hospital in Glasgow.
Elaine described the anxiety of the situation as like “living somebody else’s life”.
She said: “I felt complete numbness. The fear that came over me was like nothing I’d ever felt before. It was like I was living somebody else’s life. Thankfully, the team looking after Katie was magnificent. They had to have some really difficult conversations with us but they were professional and compassionate.”
Katie had emergency surgery on December 15 to insert an external ventricular drain (EVD) to relieve the pressure in her head. Three days later, she had a craniotomy to debulk the tumour.
Elaine said: “She went into theatre at 9am and she wasn’t out and in recovery until 7pm. When we approached the recovery room, I wasn’t sure I could bear to go in and see her, in case she didn’t respond.
“We’d be made aware of all the significant risks of her surgery and I was terrified.
“Thankfully, we saw the anaesthetist first and he said that Katie was shouting for me. She had also been drinking juice, which I knew was another positive sign.”
But, on Christmas Eve, Elaine and Graham were told that the surgery alone wouldn’t be enough. Katie’s surgeon Mr Meharpal Sangra, had removed all of the tumour however the histology confirmed that it was a medulloblastoma and Katie faced another 10 to 12 months of cancer treatment.
Elaine said: “I don’t think I really took it all in. The medics outlined a rough plan and I went into ‘practical mode’. If I know there’s a plan, I’m OK. Graham, on the other hand, was really emotional and upset.”
Katie was discharged from hospital on December 30 and began a six-week course of radiotherapy at The Beatson Cancer Centre on January 18.
Elaine said: “Other than some hair loss, Katie didn’t suffer too badly from the side effects of radiotherapy.
“She was home every afternoon to do home-schooling. She breezed through it.
“The chemotherapy, however, has been really tough. She started chemo on 12 April and it’s not predicted to finish until Christmas 2021.
“The treatment makes her sick, exhausted and is causing aches and pains all over her body. She’s lost her appetite to the point that she now has to be tube-fed.”
Elaine and Graham have thanked the “amazingly supportive” community around them and say they’ve been “touched by everyone’s kindness”.
Elaine said: “Our church, ONE Church Scotland in Coatbridge has been wonderful, as have our family, friends, colleagues, neighbours and even people we’ve never met but who have heard what we’re going through.
“One day we came back from hospital to find Katie’s friends had left little hand-written notes for her outside the front of the house.
“Every house in our street is displaying a yellow heart in the window; an indication that they are thinking of Katie. We’ve been so touched by everyone’s kindness.”
The coronavirus restrictions across Scotland eventually began to ease and the family have been urged by doctors to make “sensible decisions” and to continue being “very cautious”, as the treatment weakens her immune system.
Elaine said: “We’re still not going to other people’s houses or having people visit us inside the house.
“It’s been really tough for Katie, as she’s so desperate to see family and friends and to be a ‘normal’ eight-year-old girl.
“Family have been doing window visits and she has been attending school and brownies via Zoom.
“Dealing with this terrible diagnosis and Katie’s treatment during a global pandemic has definitely added to the challenges.”
Last month the family received the hopeful news that the Brain Tumour Research Centre of Excellence had made a breakthrough in the way that children with medulloblastoma are treated in future.
The team is led by Professor Silvia Marino at Queen Mary University of London.
Elaine said: “The idea that scientists are developing new, targeted treatments for patients like Katie makes us feel much more optimistic.
“I’ve done a lot of my own research into the disease and was shocked to discover the lack of funding into brain tumours compared to other cancers.
“I signed the Brain Tumour Research petition and have encouraged everyone I know to do the same.
“I have to do everything I can to ensure Katie and other young brain tumour patients like my daughter have the bright futures they deserve”.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet, historically, just 1% of the national spend on cancer research has been allocated to brain tumours.
Joe Woollcott, community development manager at Brain Tumour Research, said: “We were so very sorry to learn about Katie’s diagnosis.
“We are thinking of her as she continues with her treatment and hope that her next scan brings positive results.
“Katie’s story reminds us that brains tumours are indiscriminate; they can affect anyone at any age.
“By sharing their story to help raise awareness of this devastating disease, Elaine is helping to make a difference to other brain tumour patients now and in the future. We thank her sincerely for her support.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK.
It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
To donate to Brain Tumour Research, click here.