Ronnie Fehily's children tell Geraldine Lynagh why they set up a charity in her name to help other families
Christmas was Ronnie Fehily's favourite time of year. The Wicklow woman loved having her family and friends in the one spot and made a huge effort to make it perfect. She loved spoiling her little granddaughter, who was mad about her.
But last Christmas was different. The mother of four was surrounded by family and friends as always, but these were her last few days at home and she relied on home care from the hospice to get her through them. She couldn't talk or walk because of the brain tumour she had been diagnosed with just over three months before, but nothing could knock her sense of fun.
"She was in good spirits and laughing at different things that we were doing, or things that were on the television," her daughter Natasha remembers.
"It was nice to have that."
Ronnie passed away surrounded by her family at the hospice in Harold's Cross on January 11. And her family have set up a charity in her name (see panel).
Less than four months before she died, Ronnie had been an active 62-year-old.
She had worked full time as a pharmacist in Edenderry, was involved in fundraising for charities and was planning a ski trip for the following February. Horses also took up a lot of her time.
"My brother Simon was involved in eventing and she went everywhere with him in Ireland and abroad," says Natasha.
Ronnie was fit and healthy and always on the go, but in September she began to feel strange.
"She just wasn't feeling herself," sayss her daughter. "She was just out of sorts. She became concerned about her memory. She just wasn't as bubbly and was slightly distant, which wasn't like her."
Her family brought her to the Hermitage Clinic in Lucan, where she had some tests. "We really thought it was going to be tiredness or something like that," recalls Natasha. But the diagnosis was much more devastating.
Ronnie had a grade 4 glioma. It's otherwise known as a butterfly brain tumour, the family was told, because it extends out like a butterfly, making it difficult to remove.
Because of where it was in Ronnie's brain -- the frontal lobe -- it was inoperable.
"Everything progressed quite rapidly after that," says Natasha.
"It affected her ability to walk or communicate effectively. It was a big thing for her not to have been able to walk, because she had been so active," she continues.
"She was upset, but her number one priority was always us and she was still trying to protect us even when she was going through something so awful."
Because of her relatively young age, the doctors tried radiotherapy and chemotherapy. It soon became clear that nothing was going to work and Ronnie went downhill fast.
The family was devastated, but her children, as well as Ronnie's sisters and extended family, pulled together.
"We organised ourselves so that she was never on her own," says Natasha.
"As it got worse, the hospice was very good. We were there day and night. We did shifts."
Despite Ronnie's inability to walk or talk, she knew her family was around her.
"She was fully aware of us," Natasha says.
"She was holding our hands and smiling. She would eat for us and try to communicate with us.
"And we had a few afternoons where we were able to bring her out."
The family stayed strong for their mother, but inside they were reeling.
"She was the centre of our lives and it all happened so fast. There was so much going on. We had to be there for each other to meet all the different doctors and consultants," says Natasha.
Ronnie moved into the hospice in Harold's Cross in mid-November, less than two months after her diagnosis. She received excellent care there and the staff tried to prepare the family for what was to come.
"Mum never appeared to be in any pain or discomfort, because they managed her pain relief so well," remembers Natasha.
"They're very aware of the stages of dying, and they prepared us for each step, so we got as little a shock as possible."
When the end came, it was very peaceful. "The last few days we were all together. We were lucky that we were able to be there," says Natasha sadly.
Dealing with their beloved mum's short illness was terrible, but one thing frustrated the family more than anything.
"Even though she had excellent medical care the whole way through, we found it very difficult to access information about brain tumours and support systems.
"Finding out about mum's rights and entitlements and stuff like that," says Natasha.
'There are a couple of organisations abroad and we did tap into them, but we felt there needed to be something in place in Ireland. When you are faced with something like this, you always like to have something from home. Something familiar."
More importantly, they wasted a lot of precious time trying to find out what they needed to know.
In their mother's memory, her four children have set up Brain Tumour Ireland, otherwise known as Ronnie Fehily Foundation.
The charity aims to make sure no-one experiences the same lack of information they did.
"People think that brain tumours are rare enough, but there are 372 on average diagnosed every year in Ireland," says Natasha.
"We felt that if we could make the journey any easier for either the patient or their families, then we should. It would have been something we would have really appreciated at the time."
So what would she have made of it all? "Mum was so caring," says Natasha.
"She always went out of her way to help other people. We know that this was something that she definitely would have been proud of and it would be something she would have wanted to be involved in herself, had it not been her."