Dying but I need to save my little girl first
TomAttwater has terminal cancer and only two years to live, yet he’s busy organising fundraisers to collect Dh3 million – he has already raised three quarters of it – to save his five-year-old’s life, says Anthea Ayache
Kelli Attwater laughed as she lurched forward on the playground swing, her legs vigorously propelling her five-year-old frame higher. Her blonde hair tumbled over her eyes and she gripped the rope tight, screaming for her mother to push her higher. It was a warm summer day in Birmingham, England, and a pictureperfect moment for the Attwater family. Her father Tom stood in front of the swing pensively, his smile belying the thoughts racing through his troubled mind. Kelli smiled and waved at the camera that Tom seemed to have forgotten was in his hands. He smiled back, and laughed, remembering how her grin had been contagious since the day she and her mother had walked into his life some three years earlier.
Kelli’s loud laugh brought him back to the present and Tom aimed his camera to capture his daughter’s image – he wanted the moment to last forever, a moment where all the troubles that haunted this close-knit family of three would vanish into the warm afternoon air, never to return. Tom knew this would be one of the few remaining summers his family would ever enjoy together. He wanted to capture the moment for posterity, for his little girl to remember after he was long gone.
Too young to die
Businessman Tom, from Sutton Coldfield, is just 31, too young to have a terminal brain tumour that despite the best medical efforts, continues to grow. But he is not alone in pain. His five-year-old stepdaughter Kelli also has cancer. Having twice survived neuroblastoma – the most common cancer that can occur outside the skull in childhood – once when she was just three months old and then again when she was two, doctors have told the Attwaters that it is likely she will relapse again.
She has already undergone seven months of chemotherapy and several operations. The chemotherapy Kelli had makes her more likely to develop other types of cancer, including leukaemia. The problem is, the National Health Service (NHS) in the UK does not cover the cost of treatment that Kelli may require.
“The kind of cancer Kelli has means if a child relapses once then it makes it very likely that they will relapse again,” Tom explains. “And in the UK currently there is no treatment offered on the National Health Service for such a relapse. I have asked them why many times but have not received an answer. I can only assume it’s because the morbidity rates are too high for the cost of treatment.”
Around 650 cases are diagnosed in the US and around 100 in the UK every year.
Tom himself was diagnosed with brain tumour in September 2012 after he had a seizure and fell unconscious while making a cup of tea at his sister Amy’s place.
“I hit my head on the cupboards before falling to the floor, leaving the kitchen covered in blood,” he says.
Amy, a doctor, rushed him to hospital where a CT scan revealed he had a massive tumour on his brain.
Further tests found the tumour to be cancerous. “I used to experience severe headaches but it was the first time I’d had a seizure, apparently because the tumour on the brain was growing and pressing against my skull.”
He spent a couple of weeks in hospital and had extensive brain surgery in which doctors removed 70 per cent of the tumour. “I was popping around 70 pills a day post operation,” he says. Following more tests, he was told in April last year that the tumour was terminal.
The average life expectancy after surgery is three years. “I know one year is up,” he says. He has also had one session of chemotherapy – in May this year – which he described as “awful”.
Although Tom was devastated to learn about his inevitable fate, once he began absorbing the shock, he wanted to make the most of every day that he had with his family.
And despite his condition he began to look into viable treatment options for his daughter. “I didn’t want to see my little girl in pain.
“I can’t go, can’t rest in peace, until I know Kelli will be cared for. Nothing can save me, but I’ll work until my last breath to ensure my little girl is saved,” he says.
He soon discovered that the best course of action was to send her to either Germany or the US where pioneering new treatment is now available. The issue was the cost: ₤500,000 pounds (around Dh3.1 million).
“There are several hospitals in both the countries that provide treatment, with very positive results, so we obviously started looking into them seriously,” he says.
“But what makes me angry is that the NHS here will give liposuction to people who haven’t put the effort in to lose weight or they will provide cosmetic surgery procedures for people for aesthetic reasons but they won’t save a dying child. This
As Kelli has twice had cancer, it is likely she will relapse, but the NHS won’t cover treatment
isn’t something cosmetic; this is my daughter’s life.”
Frustrated and unsure where to turn on learning that his daughter’s condition would not be covered by insurance, Tom and his wife, Joely Smith, 26, joined the registered charity, FAN or Families Against Neuroblastoma, an organisation that provides assistance to families of sufferers, whether newly diagnosed, in treatment or remission, or dead.
“FAN advised us that fundraising was the way to go and that really we needed to start immediately,” he says. “As a father I knew I had to do whatever I could. I couldn’t look Kelli in the eye unless I knew I had done everything possible for her, regardless of my illness or any other factors.”
So, even though his own health was failing and scans showed his tumour was growing through vital parts of the brain, Tom set about raising £500,000 for his daughter’s cancer treatment.
“I have had a full life up until now,” he says, “but Kelli hasn’t had the chance yet, and doctors have told us that it is quite likely our little girl will relapse. If we cannot pay for her treatment, Kelli will die, it’s that simple.”
So far the couple, who married in April this year, have managed to raise three quarters of the total amount needed. They have held fundraisers across the UK involving everything from sponsored karaoke nights to wristband sales, walkathons and triathlons, but despite this success, Tom is exasperated to see his body beginning to lag behind his motivation.
“Some days I am completely exhausted and unable to get out of bed,” he says.
“Kelli knows how to phone an ambulance in case my wife is not at home and I have a seizure. And she knows how to cheer me up. She’ll say, ‘Dad, can I give you a big hug? That’s what makes me feel better’.
“She is sensitive, beautiful, wonderful. She’s full of life. And I want her to have a life.”
Over the past 10 months, Joely and Tom have been working hard, “even though I am very ill most of the time and have severe headaches and nausea,” he says. “But when I feel better we are out fundraising because we are trying to raise the total amount needed as soon as we can so that we are able to enjoy some time together as a family.”
Despite the fact Tom now spends more and more time in bed, he insists on being a part of all fundraising events. He personally meets or at least speaks to everyone who is assisting them with The Kelli Appeal, and when he is not bedridden he attends events such as the karoake nights and cake sales, and even marathons, where he stands and encourages supporters at the finish line.
“It’s crucial to be a part of it,” he says. “But although I am not the one doing all these strenuous events, the time I dedicate towards those who are helping is very energy sapping and these days, sadly, I get tired so easily.
“I struggle sometimes and there have been some very bad side effects of my brain tumour, such being left exhausted and with headaches, but I am determined to raise this money,” he says. “Kelli is happy and always smiling and doing very well at school. Her positive attitude inspires us every day.”
While Kelli, who is not his biological daughter but who he says is “every bit my child’, may not fully understand her own condition or the
‘I have no idea how I am still sane, but I realised I have no choice but to stay strong for the family’
lengths to which her father is going to save her, she is aware that Tom will not be around forever.
“Kelli knows my condition because Joely told her that I have some tumours on my brain. Some mornings she comes and kisses my head and says, ‘I wish all those nasty tumours would go away.’
“I have no idea how I am still sane but I realised that I have no choice but to stay strong for my family,” he says.
Knowing that he may not be around when his daughter gets married, he decided to take a heartbreaking step. “When Joely and I got married, I walked Kelli down the aisle, which was one of the most special moments of my life. She may not understand everything but she knows
that I won’t be around to walk her down the aisle when she grows up so this was my chance to live out that moment with her. It was very special.”
Although Kelli has been told about Tom’s condition, her parents haven’t fully explained her own illness to protect her childhood and quality of life. “She vaguely understands her condition,” Tom says. “She has been through chemotherapy and more than six operations and she has to have MRI scans every three months, but she understands it in a child’s context, she doesn’t realise the gravity of the situation. We wanted her to know some things but certainly not the brutal facts.”
Since his own diagnosis, Tom’s list of priorities has changed. “I used to be a workaholic. But Kelli’s cancer, then mine, has changed my outlook on life. Work has taken a backseat. Now I focus on family and the simple things in life like going for a walk with the girls, dancing and singing with them in our home, telling stories to my little girl…”
Tom has filmed himself reading story books to Kelli, “so she will not forget my face or voice.
“I know the girls will be deeply affected when they lose me,” he says, so has written a letter for Kelli to open on her 18th birthday, a letter full of the fatherly advice he knows he will never be able to give her face to face.
“I had a very bad seizure – a result of the tumour that is still growing – in December 2013,” he explains. “It took me a very long time to recover from it, I still don’t think I have, in all honesty. The problem is with a brain tumour and epilepsy caused by the tumour I could have a seizure anytime, hit my head and, unfortunately, that would be it.
“So a part of me knew I needed to give her fatherly advice and the only way to make sure she got it when she was older was to write it down.” The letter (printed overleaf ) includes the kind of advice fathers around the world sigh and take for granted, little snippets about school, friends, love and life, but to Tom they are special words of guidance he wishes he could give as his daughter goes through them.
“She is such a special little girl and my feelings for Kelli are surprisingly strong,” he says. “When I met Joely I was a workaholic businessman. I
‘Kelly feels every bit my child. I’ll do anything to help her, to save her; anything that’s needed’
wasn’t particularly looking for a longterm relationship or one that involved a child that biologically wasn’t mine. But as soon as I met Kelli I fell in love with her and she feels every bit my child. I’ll do anything to help her, to save her; anything that is needed.”
He adds, “Having a child who could be terminally ill and requiring surgery costing ₤500,000, while being terminally ill yourself, is extremely difficult. But I won’t let it beat me before I raise that money for Kelli because, quite simply, I will have let my daughter down if I die before it happens. All we want is to help our little girl beat cancer.”
Kelli hasn’t had a chance to lead the full life he has, says Tom
When Joely and Tomgot married, Tomwalked Kelli down the aisle, as he wouldn’t get the chance later
Tomwasn’t looking for a relationship, but Joely and Kelli changed his life