A West Lothian mum is hoping her teenage daughter, who is currently on palliative care, will get to fulfil a dream by getting to meet Ed Sheeran.
The singing superstar will play at the OVO Hydro in Glasgow on March 28 with Elaine Beattie and 16-year-old daughter Ellie set to attend.
Ellie lives at home with her mum and two big sisters, Rachel and Kylie, in Livingston. She was diagnosed with metastatic pineoblastoma, an aggressive brain tumour, at 12.
That is the same rare genetic cancer that Elaine’s big sister Maria Jayne passed away from at the age of 19 and decades later she is going through the heart-wrenching journey with her own daughter.
Elaine, now 49, said: “We are always looking to create special memories.
My daughter Rachel bought three tickets for Ed Sheeran on March 28 and she would love to meet him. It’s the same day that she’s due her latest MRI results back.
“We’ve also got some birthday surprises lined up for her.”
Treatment was going well for the schoolgirl and after a six-month hospital stay was stable for nearly three years until a scan last year showed new tumours.
Mum Elaine said: “Ellie’s birthday is on April 3 and she is going to turn 17, she has been on palliative care since July 2022. We didn’t think she would make 17.
“When she was first diagnosed at 12 years old we were told she wouldn’t make it to her 13th birthday, but she is a fighter and she just keeps carrying on.
“Ellie is my youngest of four, she had a lot of symptoms before we knew what it was, going back to when she was just eight years old.
“She struggled to control her legs and sit cross-legged, we took her to the GP and they thought it could be neuro-related but all the tests kept coming back negative.”
The mum continued: “She used to get constant headaches and eventually I took her to Optical Express and when they checked her eyes there was so much fluid on her brain she could have lost her eyesight.
“It took almost eight months to get a diagnosis but after months of testing and different biopsies, she was finally found to have both metastatic pineoblastoma and leptomeningeal disease.
“It’s a type of brain tumour and they couldn’t take it away because it was in the central part of the brain. She went through high-intensity chemo and left the hospital just before her 13th birthday.”
Most of the treatments took place at the specialist cancer ward in the Western General which can be daunting for the schoolgirl.
Elaine said: “When Ellie was getting her treatment we sat in the waiting room that was full of adult patients – that’s when it really hits you. Thinking that my then 12-year-old was going through this horrible treatment.
“How harsh it is on adults and knowing how much worse it is on kids. She had three tumours, and they were able to remove just one but with other treatment, the doctors got the disease under control.”
Last year, after remaining stable for three years, the family got the heartbreaking news Ellie’s condition had deteriorated and they moved to palliative care.
She said: “On July 12 following a scan we were told Ellie had relapsed. It was on my birthday, so a birthday I won’t forget.
“We left the hospital and went to the cinema to see Elvis the movie with Ellie’s big sister Rachel. Ellie didn’t want to spoil my birthday – she is such a kind wee soul.”
Ellie has been on palliative chemotherapy since with mum Elaine trying to make as many special memories while they still can.
She explained: “Her chemo stopped in 2019 after a six month stay in the hospital and all the scans were stable from 2019 til 2022 when it showed three more tumours.
“One tumour they removed from her right temporal lobe got biopsied and showed a relapse for pineoblastoma.
“She is on palliative chemo now to try and slow things down which includes gruelling treatment every month and because she is so sensitive to chemotherapy it makes her really unwell.
“She has a scan every three months but it will stop working eventually. My sister died of the same tumour in 1990 when she was just 19 and I was 17.
“It’s genetic so I have the gene and passed it onto her. I’m afraid the same will happen to Ellie. Every day is so precious. I just hope this chemo – the temozolomide will slow the tumours down and I dread the thought of it not working.
“We are trying to keep her stable and do things Ellie enjoys, we go to Rachel House Hospice in Kinross where we get 20 days per year.
“I can stay with her there and we had some time in December at the hospice which was really nice.
“They have entertainment and really good activities for us to do together.”
Most of all the youngster just wants to get back to school and misses her friends.
“She loves school. You don’t get many 16-year-olds who say that,” jokes Elaine.
She said: “All she wants is to get back to school. She is really intelligent and so good at English and art. We just want to salvage her education, next week she will finish this round of chemo so she should be going back then.”
Don't miss the latest news from the West Lothian Courier. Sign up to our free newsletter here
