The hardest thing I had to tell my boys wasn’t that their mum’s dying.. it was that she was too sick for them to visit her anymore
Dad reveals his agony over brain tumour diagnosis and his mission to help others
Devoted dad Grant Easingwood will never forget the day he had to sit his two little boys down and tell them the mummy they adored was going to die.
His youngest son Cairn was just 18 months old when his wife Nikky, then 36, was diagnosed with a terminal brain tumour. Their older son Logan was six.
Nikky spent the next three years undergoing treatment ranging from surgery and chemotherapy to revolutionary immunotherapy.
When Nikky died aged 39, Grant says it was the staff at the Marie Curie Hospice in Edinburgh that helped him prepare his sons to say goodbye.
Now Grant, 45, and his two brave boys, six and 11, are doing all they can to help other families going through the same heartache.
The family have helped raise more than £100,000 in Nikky’s memory for the hospice and are speaking out to support the launch of the charity’s Great Daffodil Appeal.
Grant, of Edinburgh, said: “The hardest conversation I had to have with the boys wasn’t actually the conversation when I had to tell them their mummy was dying.
“It was a few months later when I had to tell them that she was too sick now for them to visit her any more.
“For Nikky, the worst part of her illness was the thought of leaving her boys.
“Wh en Nikky’ s treatment stopped working, we sat the boys down together at home and, while they cuddled into her, I had to tell them their mum was going to die.
“Nikky was in the hospice and close to the end when I had to tell the boys she was too ill for them to visit any more.
“The team at the hospice gave me so much advice about what I needed to say and made me think about things I might otherwise have never considered.
“As a family, we got so much support. Now we are doing what we can to help them help others.”
Nikky, who was head of business change with Heineken, was diagnosed with a brain tumour in September 2014.
She had been suffering from migraines for several years but had gone to her GP after they started to worsen.
Grant said: “Nikky first started having migraines a few years ago. Some affected her speech. I remember her coming in one afternoon and it was as if she had been out drinking but she’d only been out shopping.
“They went away but then they started getting more regular.
“We had gone away one night to celebrate our 10 th wedding anniversary at a hotel beside Stirling Castle and Nikky became quite sick with what we presumed was another migraine. We never imagined what was really wrong.”
Nikky sought the advice of a neurology specialist at a private health clinic in Edinburgh.
Grant said: “She was told all her symptoms sounded exactly as you might expect from a migraine but the consultant said he would refer her for an MRI to be absolutely abs sure.
“On the day of the MRI, she phoned me in floods of tears. Someone doing the scan asked her how long she had been ill for. “I tried to reassure her that they just meant how long she had been having headaches for but Nikky’s fears were right.”
Test results showed Nikky had a 6cm large glioblastoma – an aggressive form of brain cancer.
The couple were told her cancer was terminal but she could be given surgery and other treatment to prolong her life.
Nikky attended the Western General Hospital in Edinburgh for an operation to remove as much of the tumour as possible, followed by chemotherapy and radiotherapy.
When the tumour continued to grow, they searched for any treatment trials that might slow down the progression of the cancer.
Grant said: “We were told about an immunotherapy trial taking place in
London. Nikky had read an article about Minder star Dennis Waterman’s wi fe having the treatment so she contacted her through Facebook and they had a long chat about what it involved and how she was doing.”
Nikky was accepted on to the trial and, at first, the couple were hopeful about its success.
But, a year on, Nikky’s symptoms started to worsen.
Grant said: “Her memory started to go – she wasn’t quite herself. Then, within just a few months, her balance was all over the place and she struggled to walk.
“Logan and Cairn could see their mum was changing.
“Up until then, we hadn’t told them that Nikky’s illness was terminal.
“They knew mum was ill, that she had
a lump in her head and that she was having operations to take it out and treatments to stop it coming back.
“It wasn’t until we’d stopped the immunotherapy that we decided to tell them.
“By this point, Nikky was struggling to communicate so I did all of the talking. The hospice had given me a booklet on how to tell children about terminal illness. And I spoke to a counsellor, who helped me to decide how best to approach the conversations.”
With the support of family and friends, Grant spent the next three months caring for Nikky at home before she was admitted to the Marie Curie Hospice in Edinburgh.
Grant said: “The hospice wasn’t what I had imagined at all. It was bright and airy. The atmosphere, the staff and everybody’s attitude in there was just so caring and positive.
“While at the hospice, we organised a number of afternoons where the whole family came over together and sat out in the garden with Nikky.
“We had a big picnic and played games with all the kids.
“The staff were always encouraging us to do normal things like have movie nights with the boys in Nikky’s room or take her out on the balcony to enjoy the sun, even wheeling her bed out there if she couldn’t get up that day.
“It was so important to have that sense of normal life happening, even if it was in a hospice.
“It made the boys feel more comfortable and like they could make the most of the time they had left with their mum. One of the big things for me was that I got to stop being Nikky’s carer and went back to being her husband.”
Nikky was cared for at the hospice for three months before her death in July 2017.
Since then, her family and friends have held fundraising balls, prosecco parties and even run a marathon a month for a year to raise money in her memory.
Grant, who will next month speak at a Great Daffodil Appeal reception at the Scottish Parliament, said: “The work carried out by Marie Curie is so important yet the majority of its funding comes from donations.
“We want to do all we can to support them.”