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

Friday - - Front Page -

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.”

Pro­tect­ing in­no­cence

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

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