Father's Day is a bittersweet day for one family as they cherish every second with their father knowing he may not be here to celebrate the special day next year.
Gemma Lyon and her daughters Bella, 14, and Florence, five, will take extra care as they make father Alex, 32, his favourite breakfast of egg and bacon sandwiches and give him a football shirt for his beloved Leicester City.
For Alex knows he might not have long left after he was diagnosed with a grade 4 glioblastoma in January. A grade 4 glioblastoma is the most common aggressive brain tumour in adults and has an average prognosis of 12-18 months.
'Father's Day will be so emotional this year,' said Gemma, 36, a recruitment agency manager from Leicester.
'Due to this cruel disease we never know if it will be the "last" of family occasions. We will fill it with smiles and laughs making memories for the girls and treating Alex like the hero he is to them.
Gemma Lyon and her daughters Bella, 14, and Florence, five, will take extra care as they make father Alex, 32, his favourite breakfast of egg and bacon sandwiches and give him a football shirt for his beloved Leicester City. For it might be their last as a family
Alex knows he might not have long left after he was diagnosed with a grade 4 glioblastoma in January. A grade 4 glioblastoma is the most common aggressive brain tumour in adults and has an average prognosis of 12-18 months. Pictured, with the girls
Alex was a 'different person' after surgery to remove part of his brain tumour, Gemma said
'They have bought Alex a new Leicester City football shirt with 'LYON 1' on the back because he is their number one and I've bought them matching shirts.
'They will be making a menu with all of his favourite foods like crisp sandwiches which the girls know I hate making and Florence says they will be 'Daddy's helpers' for the day.'
Now Gemma is sharing their story through The Brain Tumour Charity to raise awareness of brain tumours – the biggest cancer killer of children and adults under 40 in the UK – and highlight the importance of its support services as the devastating disease affects the whole family.
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, after bumping into each other on nights out.
'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.'
Now Gemma is sharing their story through The Brain Tumour Charity to raise awareness of brain tumours – the biggest cancer killer of children and adults under 40 in the UK – and highlight the importance of its support services as the devastating disease affects the whole family. Pictured, with Florence as a newborn in 2015
Proud dad Alex leaving hospital with baby Florence in 2015. He was diagnosed with a brain tumour in January
Gemma already had daughter Bella when she met Alex. The couple married (pictured) with their girls as their bridesmaids
Gemma and Alex got married on New Year's Eve 2018 in a touching family ceremony
Gemma remembered the happy times the family shared together, including their wedding
Their family was completed when Florence was born in 2015 and Gemma and Alex got married on New Year's Eve 2018 with the girls as bridesmaids.
'He was the most amazing dad to them – very calm and caring and he has always treated Florence exactly the same as Bella,' said Gemma.
'His girls were the centre of his world and we were very much a team looking after them and ferrying them to their dance classes.
'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.'
Gemma with her daughters Bella and Florence, who are now preparing for the thought that their dad will die one day
Alex with Bella and Florence. Gemma told how his behaviour has changed due to the cancer
The family's nightmare started in November 2020 when Alex began suffering with terrible headaches.
Gemma continued: '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. I tried to get him to go to the doctors and he just got tetchy with me and insisted he'd be OK.'
However Gemma had seen first hand the devastation caused by cancer and alarm bells started ringing. Alex's mother died of the same type of brain tumour in May 2019 and Gemma's brother, Matthew, was diagnosed with a non-cancerous brain tumour when he was nine. Now 32, he still has regular scans and has trained to be a nurse.
'It kept going through my mind that Alex may have a brain tumour – but how could it happen a third time?,' Gemma said.
Gemma had seen first hand the devastation caused by cancer and encouraged Alex to go to hospital. Pictured, the couple with youngest daughter Florence
Alex having father-daughter time with Bella and Florence, when she was just a baby
'Looking back, I think Alex put off going to the GP as he was scared he was going to be told he had a brain tumour like his mum.'
Finally, Gemma persuaded him to go to the GP in January who said 'sometimes just visiting the doctors can help with headaches'.
'He then had an eye test which didn't reveal any problems and they just slightly changed his prescription,' said Gemma.
WHAT IS A GLIOBLASTOMA?
Glioblastomas are the most common cancerous brain tumours in adults.
They are fast growing and likely to spread.
Glioblastomas' cause is unknown but may be related to a sufferer's genes if mutations result in cells growing uncontrollably, forming a tumour.
Treatment is usually surgery to remove as much of the tumour as possible, followed by a combination of radio- and chemotherapy (chemoradiation).
It can be difficult to remove all of the growth as glioblastomas have tendrils that extend to other regions of the brain. These are targeted via chemoradiation.
Glioblastomas are often resistant to treatment as they are usually made up of different types of cells. Therefore, medication will kill off some cells and not others.
The average survival time is between 12 and 18 months.
Only 20 per cent of patients live longer than a year and just three per cent survive over three years.
Source: The Brain Tumour Charity
Then came the day January 27 'which started just like any other day but changed our lives.'
'I was at work and Bella was at my mum's house revising while Florence was at home with Alex,' said Gemma.
'We usually text during the day but I didn't hear anything from Alex and he wasn't answering my messages or calls.'
Instinct told Gemma something was very wrong.
'I popped home from work to check on him and as I pulled my car up on the drive, I could see Florence happily playing with every toy she had out on the floor with Alex in a deep sleep on the sofa,' she said.
'It was difficult to wake him up and he was confused. I told him I was taking him to hospital and got his dad to come over to look after Florence.'
Gemma drove Alex to A&E at Leicester Royal Infirmary but couldn't go in with him due to Covid.
'I just sat in the car park for hours waiting to hear something,' she said.
'I went home at 6pm to see Florence and give her tea. At 9.30pm, Alex rang me to say he'd had a scan and said, "I've got a brain tumour. I think I might need to stay in".
'He sounded very matter-of-fact but I think he was in shock and I felt dreadful I couldn't be with him.
'I broke down and cried my eyes out for an hour and then I rang Alex's dad and three brothers to break the news.
'Then I snuggled up in bed with Florence but I didn't get a wink of sleep. I just lay there all night staring at the clock. Next morning we drove over to my mum's to see Bella. I needed the three of us to be together.'
Gemma had told Florence Daddy wasn't very well and was in hospital but knew Bella would want to know more.
'I took her to one side and she immediately asked, "has Daddy got a brain tumour like Mommar?",' using the pet name for Alex's mother.
'When I said "yes", she asked if he was going to die. I just replied "I don't know", and held her tight. Every fibre of my being wanted to tell her everything would be OK but I had to be honest with her.'
A week after his diagnosis, Alex had a five-and-half hour operation at Queen's Medical Centre in Nottingham to remove a large amount of his lime-sized tumour. Pictured, the family in 2017
A week after his diagnosis, Alex had a five-and-half hour operation at Queen's Medical Centre in Nottingham to remove a large amount of his lime-sized tumour.
Alex came home from hospital after surgery 'a very different person' and 'that's what no one tells you about or prepares you for.'
'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.
'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.
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. Pictured, Alex with his girls
'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.'
Biopsy results revealed history was cruelly repeating itself and Alex had a glioblastoma like his mum.
He underwent six weeks' concurrent chemoradiotherapy and is currently on his second cycle of chemotherapy.
Heartbreakingly, Alex's memory problems meant that he couldn't remember he'd been told he had incurable brain cancer.
'In hospital, he'd ask what was wrong with him and each time it would feel like the first time he heard it,' said Gemma.
The girls are going to give their father a personalised Leicester City top for Father's Day
Gemma said the day and the presents are bittersweet because it might be Alex's last
'I found it incredibly painful that I couldn't be with him and strangers had to tell him over and over again that he had an incurable brain tumour.
'Back at home, he still asks sometimes, 'What have I got?' 'Will this treatment get rid of it?' and it's so upsetting to explain again.'
Gemma says she is 'very open' with the girls and doesn't want them to think asking about death is 'taboo.'
So when Florence asked the heartbreaking question, 'Is Daddy going up to Heaven with Mommar?' as she was tucking her up in bed one night, she knew she had to be honest.
'I said he would be, yes, and then she asked; 'Is Daddy going to die?' said Gemma.
'I should have been reading her a bedtime story not telling her that Daddy was going to die. I held her tight and told her that we had each other and that we'd make as many happy memories as we could with Daddy.'
Now Gemma says they take life a 'day at a time' and 'find joy in every little achievement' like Alex making a cup of tea or walking up the stairs. Pictured, out with face masks on
Gemma continued: 'Alex was so protective and made the girls think he could do anything. Now it makes me so sad that is all in the past now and he can't do much with them.
'But sometimes he'll listen to Florence reading, if he comes out to sit in the garden with is it makes the girls' evening and recently he managed a trip out with us.
'The girls love him more than ever and are so incredibly proud of every little thing he achieves.'
Now Gemma says they take life a 'day at a time' and 'find joy in every little achievement' like Alex making a cup of tea or walking up the stairs.
'It's vital to be open and talk about your feelings and The Brain Tumour Charity's closed Facebook group for carers has been a lifeline,' said Gemma.
She says it's 'daunting' to look into the future and she has to be 'as practical as possible for the girls.'
'You just never expect to wake up one day and be faced with being a young widow,' said Gemma.
'Alex is here now and I am extremely proud of him. We all are and that's what we focus on, cherishing each second together. Love helps me to cope – my love for Alex and our girls gets me through.'
Eve Kelleher, The Brain Tumour Charity's head of services, said: 'We send Gemma and her daughters our warmest wishes for celebrating Father's Day with Alex.
Gemma says it's 'daunting' to look into the future and she has to be 'as practical as possible for the girls.' Pictured, Alex with Florence and Bella
'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% more people join our online communities for support and a 40% increase overall in people seeking our support.
'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.
'We are hugely grateful to Gemma and Alex for sharing their story to help us raise awareness about brain tumours – the biggest cancer killer of children and adults under 40 in the UK.
'Anyone affected by a brain tumour can call our free support and information line on 0808 800 0004 or email [email protected]'
Find out more at https://www.thebraintumourcharity.org/
For more information and support: https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/