‘Our little warrior Lucy’
A West Lothian mum has praised “invaluable” charity workers after her four-yearold daughter was diagnosed with a tumour that led to her losing her sight in one eye.
Emma Renwick’s daughter Lucy has pilocytic Astrocytoma grade 1, a slow growing tumour that sadly can’t be removed due to its location.
Lucy has lost sight in one eye due to the tumour and is being closely monitored in order to protect the sight in her other eye and is currently receiving 18 months of chemotherapy.
Emma’s family is being supported by the charity Young Lives vs Cancer (YLVS), which is appealing for more volunteers as part of Childhood Cancer Awareness Month this month.
She said Lucy is an “incredibly brave and resilient girl” but both her and husband Neil are “totally heartbroken that this is her life now”, adding: “We are so proud of how she is dealing with it all. She is our little warrior.”
Emma said she noticed Lucy had slowly stopped drinking, eating and going to the toilet around April last year and took her to the GP when she began to quickly lose weight and was banging her head with her hand.
Emma, who stays in East Calder with Neil and Lucy’s older brother Daniel (8), said: “They took bloods, told me she was healthy and I was to stop talking about her eating etc in front of her. It was a behavioural issue. It just didn’t sit right with me, I knew something was up, I didn’t expect this though.
“We’d also noticed an intermittent squint in her eye. The on-call GP said he couldn’t see the squint so I was to take her to an optician.
“Because of covid, it was around seven to 14 days for an appointment. We then noticed the squint more that weekend.
“We called the GP on Monday October 26. Again, they weren’t that interested. My husband even asked if it could be a brain tumour, naturally we’d Googled all her symptoms.
“After that, the GP said we could ask for an emergency appointment at an optician. All the usual ones couldn’t see us. But we then found Margaret Best’s in Juniper Green.
“We explained everything. She stayed back that day to see Lucy. When Lucy said she couldn’t see anything out her eye we both froze.
“Margaret did further tests and I know now that she seen no blood supply to Lucy’s eye. My GPs wouldn’t help Margaret so she ended up calling the Sick Kids herself who insisted we go in that night.
“Lucy had an MRI first thing on Tuesday and while still in the machine we were told she had a golf ball sized tumour in her brain, that was likely cancer.
“The next day Lucy had a biopsy and a ventricular shunt fitted to drain a build up of fluid in her brain.
“It was horrendous. They told us it was in the worst place because it was beside the optic nerves and main blood vessels in her brain.
“The 10 day wait for the results were without a doubt the worst days of our live so far. We were told it wasn’t cancer, it’s the most common type of brain tumour in children. If it was anywhere else it would be removed.”
Emma said Lucy has undergone regular blood tests, blood and platelet transfusions and her immune system has been destroyed and because of chemo, she has a higher chance of catching infections.
She has also had a portacath fitted in her chest, this makes giving her chemo and taking bloods slightly easier.
Emma said Lucy’s consultants, nurses and all the staff working on Lochranza Ward/Daycare at the Royal Hospital for Children and Young people in Edinburgh have been fantastic.
And she said the Young Lives vs Cancer charity has offered vital support to her family and has urged people to think about becoming a volunteer.
She continued: “If you can give any of your spare time, to help families like us going through one of the worst times of our lives, then please do. The support given by charities like YLVC is invaluable.
“They have been amazing from the start. We were assigned a social worker, Danisha, who has been so helpful.
“They have given us so much information, they help families find some strength to face everything cancer treatment throws at you. They have given us grants to help us navigate the costs incurred when dealing with treatment. Parking at the old Sick Kids was expensive, as was food on the go when you managed to eat.”
To say thank you for the support her family received, Emma, Neil and 18 other family members and friends signed up to the YLVC Jog50 for August fundraiser.
She said: “We all had to walk at least 50 miles in August. So far, we have raised a total of £5,470 and we just can’t believe it.
“Fundraising events like the London Marathon, football matches and fun runs were all cancelled or put on hold due to the pandemic. So fundraising challenges like these have been so important to the charity.”
A spokesperson for YLVC said: “This Childhood Cancer Awareness Month we want everyone to see children with cancer for who they are and who they want to be. Because they are more than their cancer.
“We would love to see the local community come together to help young people with cancer in West Lothian and there are lots of ways to get involved.
“We’re looking for volunteers to represent Young Lives vs Cancer at our bucket collections in local Morrisons stores. We have various dates throughout September, all available dates and times can be found on our website.
“People can also support young people with cancer by purchasing their very own Young Lives vs Cancer gold ribbon pin badge, which are available online for a suggested £1 donation.
“We’d like to thank the community for their ongoing support.
“Their efforts mean Young Lives vs Cancer can be there for the children and young people of West Lothian with cancer, keeping families together by providing Home from Homes near hospitals and financial grants for support.”
You can find more information about all of the ways to get involved this Childhood Cancer Awareness Month, make a donation or shop online at younglivesvscancer.org.uk
#MoreThanMyCancer.