‘No time for my tears, only two things mattered: my kids and finding a cure for brain tumours’

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Paula Holmes, mum of brain tumour victim Katy who died at the age of 10, has been nominated for Inspirational Woman of the Year in the Enterprise Vision Awards.

As what should have been Katy’s 13th birthday approaches, Paula talks to Aasma Day about her family’s nightmare and why they are determined to keep fighting for a cure to spare other people the anguish of losing a child to a brain tumour.

Paula Holmes with daughter Scarlet

Paula Holmes with daughter Scarlet

Taking your daughter to the doctor because she wasn’t her usual smiling self seemed a bit over the top, but deep down, her mother’s instinct told Paula Holmes something wasn’t right.

It was the start of a traumatic journey that is every parent’s worst nightmare as scans revealed that not only did 10-year-old Katy have a brain tumour, but it was inoperable and she was given a prognosis of just six to nine months to live.

Paula, who lives with husband Dave and daughters Charley, 10 and Scarlet, two, in Penwortham, near Preston, says: “I remember vividly when this whole nightmare began.

“Katy was 10 and had just started Year 6 at school and Charley was two weeks off her eighth birthday.

Paula Holmes, husband Dave and daughters Charley and Scarlet

Paula Holmes, husband Dave and daughters Charley and Scarlet

“Dave had built up his business doing deliveries and upholstery, and I had a job I was happy in, working with children after graduating with a first class degree in education. I was also six months pregnant with my third child.

“Life was the best it had ever been and we had everything a family could want or need.”

It was when Katy was presented with a certificate during a school assembly that alarm bells started ringing for Paula, as her usually beaming daughter did not smile or even flinch and just looked sad.

Paula explains: “I knew it seemed mad to take Katy to the doctor because she had stopped smiling, but a mother knows her own child and my instinct told me something wasn’t right.

“But none of us were prepared for the news that was to come.

“How could Katy possibly have a brain tumour? What did they mean she was going to die in six to nine months – maybe 12 months if we were lucky?”

As Katy fought her hard battle, Paula and Dave tried to keep everything as normal as possible for both their girls. Paula recalls: “To be honest, we just didn’t believe at this point that Katy would die, and didn’t want to frighten them with something so unbelievable.

“Each day, Charley went to school while Katy moved between Royal Preston Hospital, Royal Manchester Children’s Hospital and Derian House Children’s Hospice having tests, physiotherapy and hospital stays.

“Dave and I took it in turns to stay with her at night.

“Over the next three months, Katy nearly died three times, and we went through the whole process of having to say our goodbyes to her.

“Charley had to be told the truth about Katy dying as the reality hit us, and that moment lives with me forever.

“We made the decision not to tell Katy she was dying, and Charley never told Katy anything.”

In despair, Paula and Dave searched the world over to find a cure for Katy, and the Evening Post helped campaign worldwide.

Radio and television programmes became involved and Paula strived to carry on hiding the truth from Katy.

“The whole thing became bigger than I had anticipated and I was frightened.

“I had to hold it together because someone had to take control, and I was mum and that’s what mums do right?

“We found the only doctor that could help over in Australia, but Katy’s case was too hard even for him.”

The stress of the ordeal caused a heavily pregnant Paula’s waters to start leaking, and she desperately wanted Katy to meet her new sister, so Scarlet was induced at 38 weeks and was born on December 6 2011.

However, Paula’s joy at bringing a new life was clouded with the fear that, as one new life began, Katy’s would end.

She explains: “Katy was so excited to know her baby sister was coming, but I had convinced myself that as one came into this world, maybe the other one would leave.

“I became obsessed by it, but couldn’t stop it happening.

“Dave stayed with Katy and Charley at home and my cousin Kay stayed by my side.

“When Scarlet was born, they put her on my chest and I looked at her for a few precious seconds then I grabbed my phone and rang home.

“I insisted Dave wake Katy up so I could hear she was OK. I cried with relief that Katy was still here.

“When I put my phone down and looked up, I realised everyone in the room was crying too.

“I wanted to go home right then, but they wouldn’t let me.

“Twelve hours later, Katy had her last radiotherapy session ever, and was driven to the hospital where she held Scarlet for the first time.

“I will never ever forget that moment. Katy touched Scarlet’s fingers and stroked her hair, and all I could do was fight as hard as I possibly could not to cry.

“I knew that Katy would never see her grow up. My throat still hurts with the pain of that.”

Katy took a turn for the worse and went into Derian House, and Paula and Dave took turns to stay with Katy, with Scarlet in a cot next to her bed.

Paula also had to suffer the anguish of seeing Charley struggling to cope with what was happening to her sister.

“As her mum, I had to watch over her and make decisions around her care that meant she wasn’t watching her sister suffer all the time.

“There came a point when Charley kept away. She told me she wanted to die to be with Katy.

“I had to split my time between Charley, who needed hugs, kisses and reassurance, and Katy who was running out of time, Dave who was losing his baby girl and my newborn baby who needed her mum.

“I was so torn. But I had to keep strong and as focused as best I could, and I kept re-applying my make-up to make sure Katy never suspected anything was wrong.”

The moment the family had all been dreading came on January 18, when Katy became very poorly.

Everyone went to say their goodbyes, then Paula and Dave climbed into Katy’s big double bed at Derian House on either side of her and played her Disney CD on repeat.

Paula recalls: “At 1am on January 19, Katy sadly passed away. ‘Baby Be Mine’ from Dumbo played at that precise moment. Our hearts broke.”

After getting through the heartache of the funeral and trying to stay strong for her other two daughters, Paula found herself seeking answers and began looking into brain tumours, and that’s when she and Dave decided to launch The Katy Holmes Trust.

Paula explains: “I discovered that brain tumours are the biggest cancer killer of children and adults under 40 in the UK.

“To add insult to injury, we found research is woefully underfunded, with the Government giving less than one per cent of the national cancer research budget towards brain tumour research.

“To then hear that nobody knows what causes brain tumours or how to cure them nearly tipped me over the edge.

“I just knew we had to do something. As a fellow human being, I had a responsibility to stop this. We launched the Katy Holmes Trust to fund paediatric brain tumour research.”

To add to the family’s turmoil, eight weeks after Katy’s death, Paula’s own mother died after taking her own life on Mother’s Day.

Then baby Scarlet developed sleep apnoea, causing her problems breathing in the night.

Paula says: “There was no time for my tears. There were only two things that mattered now: my children and finding a cure for brain tumours.”

Paula and Dave became overwhelmed by the amazing support of the public for the work of the Katy Holmes Trust, and the amount of money raised by the community became phenomenal.

However, as they worked hard to dedicate as much time as possible to raising funds for research into brain tumours, they found some people misunderstood them and questioned their parenting.

Paula explains: “With my background in education, and having read many articles on the effects of grief on children, I was constantly trying to find a balance between the charity work and our home life.

“There were a few people who misunderstood us, and it seemed as though I couldn’t do right for doing wrong at times.

“If Charley was photographed or written about, we were accused of using her to front the campaign.

“When we made the decision together with Charley to keep her out of it completely, then we got accused of focusing more on Katy and the charity than on Charley and Scarlet!

“Nobody could see how hard I was balancing everything, because I appeared so in control.

“Charley’s homework always got done on time, she went to friends’ parties, she never missed appointments with counsellors and we still had family days out.

“Scarlet was well taken care of and ahead of her developmental milestones and such a happy child.

“The workload of the charity was hard, and the hours were long but it was all keeping us focused and stopping us falling apart.”

The Katy Holmes Trust has organised many events that have been well attended. Katy’s Picnic on the Park is held on her birthday every year in May, and will be held this coming Sunday, on what would have been Katy’s 13th birthday.

Pyjama Day marks Katy’s passing in January, Preston’s Got Talent is held in the autumn and Katy’s Christmas Party is held in the winter.

Every year, there has been an extreme challenge, including a team cycling from John O Groats to Lands End and this year, Paula and six others will be climbing Kilimanjaro.

As a result of all these events and many more, the Katy Holmes Trust has raised £450,000 in two years.

The trust is funding one research project that costs £185,000 at the Children’s Brain Tumour Research Centre, and will fund a new piece of research later this year.

The trust’s patrons are Clarke Carlisle and Russell Watson, who have both been very supportive.

Paula says: “Now that we know what we are doing and how to do it, we have been able to manage our home life a lot easier. The time taken to make sure Charley was never missing out has resulted in her getting straight As in school, whereas previously she scored average.

“Charley is well balanced and very philosophical about everything. Scarlet’s two-year check found she had the abilities of a three-year-old, and she was very contented.

“My tears late at night worrying about if they are both OK and if I was doing everything right for them both were worth it.”

Paula was amazed and shocked to discover she had received multiple nominations for the Inspirational Woman of the Year in the Enterprise Vision (EVA) Awards.

Smiling, Paula says: “It was a real shock, as I feel like a washed out mess.

“It is very heartwarming though and means so much to me that people are so kind and would do such a lovely thing.

“I don’t feel like I deserve it because all I have done is survive the best way I could.

“I have never lost my faith and continue to believe in myself and our cause.

“There is new research to fund and the charity continues to grow bigger and stronger.

“Dave and I now work school hours and no weekends – unless absolutely necessary, and even then only one of us does it – to ensure the girls have us to themselves.

“They see more of us now than they did before Katy fell ill.

“When we started out, I felt such a need for my surviving children to know whatever happens in life, I will always fight for them.

“Every day, I tell them how proud I am of them.

“Charley recently said to me: ‘This time it is my turn to say I’m proud of you’. She went on to say: ‘You are the best mum in the whole wide world’.

“What more can I ask for?”

To donate, visit: www.katyholmestrust.co.uk, text: KATY10 and the amount to 70070 or visit: www.justgiving.com/katyholmestrust