Father's Day was an emotional and extremely poignant one this year for a young Leicestershire family whose dad is suffering with incurable brain cancer.
Every single day is special right now for the Lyon family, from Whetstone, but yesterday (Sunday June 20) was more so than ever.
Alex Lyon's two daughters - Bella, 14, and Florence, five - are cherishing their time spent with him after the 32-year-old was told he had an extremely aggressive form of the disease at the start of this year.
It was a bittersweet day for the family, with mum Gemma having to answer the heartbreaking question - "Is Daddy going up to heaven?"
They have decided to share their heart-rending story to help raise awareness about brain tumours and to show their support for The Brain Tumour Charity.
Alex woke up on Father's Day to his favourite breakfast of egg and bacon sandwiches, which his girls had lovingly prepared for him.
And the avid Leicester City fan was in for another treat, with the presentation of a brand new Foxes jersey to celebrate his special day.
It's been an extremely difficult year for Alex and his family, after he was diagnosed with a grade 4 glioblastoma, the most common aggressive brain tumour in adults, in January.
Sufferers only expected to survive for between 12 and 18 months, leaving him and his family fearing that this year's Fathers' Day could be their last.
Tragically, Alex's diagnosis came just 18 months after his mum, Sandra, died from the same type of brain tumour.
When Florence, five, asked her mum: "Is Daddy going up to heaven with Mommar?", using the pet name used for their grandmother, Gemma scrambled for the words.
She eventually replied: "Yes, but we don’t know when, darling, and we're going to make so many happy memories with Daddy to bring to heaven with him."
"Father’s Day was so emotional this year," said Gemma, 36, who is a recruitment agency manager. "Due to this cruel disease we never know if it will be the 'last' of our family occasions.
"But we filled it with smiles and laughs, making memories for the girls and treating Alex like the hero he is to them.
"They bought Alex a new Leicester City football shirt with “LYON 1” on the back because he is their number one, and bought them matching shirts."
She added: "They also made a menu with all of his favourite foods, like crisp sandwiches, which the girls know I hate making and, as Florence says, they were 'Daddy’s helpers' for the day."
In 2010, Gemma was a single parent with Bella, then aged three, when she and Alex got together after being friends for six months on Facebook.
"I'd split up from my first husband when Bella was only a year old,” said Gemma. "We came as a package and, right from the start, Alex was brilliant with her.
"When we'd been together for four years, Alex took Bella and I out for a day in London and asked her 'Would you like me to be your daddy forever? Is it OK if I marry your mummy?’.
"He then gave me the most beautiful ring. We were all so happy."
Their family was completed when Florence was born in 2015 and Gemma and Alex got married on New Year’s Eve 2018 with the two girls as bridesmaids.
"He is the the most amazing dad to them," said Gemma. "Very calm and caring, and he has always treated Florence exactly the same as Bella.
"His girls are the centre of his world and we were very much a team looking after them - ferrying them to their dance classes and the like.
“Bella and Alex are like peas in a pod. They have the same daft sense of humour and interests - they would go out for a night-time drive along the motorway to go plane-spotting. I used to tease them for being geeks!"
"Florence was the spitting image of Alex as a baby, even down to her hairstyle when she was born. She loves going for walks and that was her 'Daddy time.'
"We did The Brain Tumour Charity’s Conquer the Challenge and raised £5,375 walking a total of 88 miles to represent the 88,000 people living with a brain tumour in the UK."
Alex, who worked as a gym membership manager at the University of Leicester, came home from hospital a "very different person", according to Gemma.
"That's what no-one tells you about or prepares you for," she said. "From being placid and laid back, he can be very angry and snappy, due to the part of the brain his tumour is located.
"He'll never remember and ask ‘Have I got angry again?' when he sees that I’m upset, and apologise."
"He can get very confused and has terrible memory problems," she added. "Sometimes I see a flash of the ‘old Alex’ and I feel warm inside but sad at the same time as I want him to stay."
As Gemma grieves for the person Alex used to be, she and her girls have had to adjust to how the husband and father they adore is today.
"We used to do everything together and I miss talking to him when I’m worried about something or sharing something funny the girls have done," she said.
"Now I’ve got to be Mum, Dad and help care for Alex – and we’ve had to slowly adjust to our new normal."
Alex's problems started in November, last year, when he began suffering with painful headaches.
"We put it down to stress as it was during lockdown and I was still in the office but Alex was juggling working from home with home schooling the girls.
“The following month, he started vomiting – he’d wake up in the morning and had to rush to the loo to be sick,” said Gemma.
“I tried to get him to go to the doctors and he just got tetchy with me and insisted he’d be okay."
On January 27, a scan at Leicester Royal Infirmary confirmed Alex had a brain tumour, which was operated on at Nottingham's Queen’s Medical Centre.
The results of a biopsy, however, confirmed the worst.
Heartbreakingly, Alex, who is on his second cycle of chemotherapy, now suffers with memory problems and has to be reminded of his diagnosis.
Now Gemma says they are now taking life a "day at a time" and "cherishing each second together".
"You never expect to wake up one day and be faced with being a young widow," she said. "Love helps me to cope – my love for Alex and our girls gets me through."
Gemma described a Facebook group for carers run by the Brain Tumour Charity as "lifeline".
Eve Kelleher, the charity's head of services, said: “We send Gemma and her daughters our warmest wishes and are hugely grateful they are sharing their story to raise awareness about brain tumours – the biggest cancer killer of children and under-40s in the UK.
“We know Father’s Day can be such a difficult time for so many families affected by brain tumours and, like Gemma, many more people are joining our online communities for support.
“Since March 2020, we have seen nearly 50 per cent more people join our online communities for support and a 40 per cent increase overall in people seeking our support."
She added: "A brain tumour diagnosis affects the whole family and our dedicated children and families service offers support for children, young people and families coming to terms with a diagnosis."
Anyone affected by a brain tumour can call a free support and information line on 0808 800 0004 or email support@thebraintumourcharity.org
To find out more, click here.
