My tummy is bet­ter and there are no more wig­g­leys

Sunday Mirror (Northern Ireland) - - News - BY AMY SHARPE [email protected]­daymir­ror.co.uk To help the fam­ily, visit just­giv­ing. com/crowd­fund­ing/rachel-davin­son

BRAVE Daisy Fail plays with a bucket and spade... after dig­ging deeper in the past eight months than most of us do in a life­time.

Flash­ing her trade­mark smile, the three-year-old is fi­nally in re­mis­sion after pro­ton beam ther­apy zapped her cancer.

Re­lieved mum Lynne said the tu­mour “has ef­fec­tively been fried to within an inch of its life”.

The Sun­day Mirror has fol­lowed Daisy on each pre­car­i­ous step of the way as she fought for her life.

The plucky tot grew weary of con­stantly hav­ing tubes – or “wig­g­leys” as she put it – in­serted into her lit­tle body.

So when she fi­nally got the all­clear you had to smile when Daisy told her pals at nurs­ery that “my tummy is bet­ter” and that she has “no more wig­g­leys”.

It was last Novem­ber that Daisy was di­ag­nosed with a rare and ag­gres­sive soft tis­sue cancer.

Lynne and hus­band An­drew were set to take the fam­ily 4,000 miles to Florida so she could have lifesaving pro­ton beam ther­apy.

TIM­ING

But when a new UK cen­tre opened with mirac­u­lous tim­ing in De­cem­ber, Daisy was thrown a life­line much closer to home.

She is one of the youngest to have ther­apy at the £125mil­lion NHS fa­cil­ity in Manch­ester – just 150 miles from the fam­ily’s home in Con­sett, County Durham.

Lynne, 43, said: “We were pre­pared to fly any­where in the world and do any­thing to save our daugh­ter. But hear­ing that she could be treated here in the UK with her loved ones close by was noth­ing short of a god­send.”

The treat­ment uses high­en­ergy pro­tons in­stead of X-rays to tar­get tu­mours with­out harm­ing sur­round­ing tis­sue. It in­creases the chance of sur­vival.

Daisy has just been given the all-clear by her lo­cal hospi­tal and Lynne said: “Words can’t de­scribe how thrilled we are. Daisy has been bounc­ing off the walls since her fi­nal treat­ment.

“Hope­fully we can move on and she can live a nor­mal life now. She is aware of what’s go­ing on – that her tummy was poorly and it’s bet­ter now. She’s just so happy, it’s won­der­ful to see.”

Daisy’s blad­der tu­mour was spot­ted at Great North Chil­dren’s Hospi­tal, New­cas­tle. She had soft tis­sue sar­coma rhab­domyosar­coma – di­ag­nosed in fewer than 60 chil­dren in the UK each year.

Dur­ing five weeks in hospi­tal she had nine rounds of chemo­ther­apy. Dad An­drew, 43, who works in car man­u­fac­tur­ing, said: “She was so tiny. It was dev­as­tat­ing. We were told it was ag­gres­sive and fast-grow­ing. We couldn’t help fear­ing the worst.

“She was a lit­tle trouper but it was still heart­break­ing to see. She lost all her hair, which was pre­vi­ously thick and curly, and she was qui­eter than we’d ever known.”

Revo­lu­tion­ary pro­ton beam ther­apy was touted as her best treat­ment op­tion.

The tar­geted ra­di­a­tion, ben­e­fi­cial to chil­dren at risk of last­ing or­gan dam­age, drew world­wide at­ten­tion after the case of fiveyear-old Ashya King in 2014.

His par­ents were ar­rested for tak­ing their son – against NHS ad­vice – from Southamp­ton Gen­eral Hospi­tal so he could have pro­ton beam ther­apy abroad. But a High Court judge backed them and Ashya was treated suc­cess­fully in the Czech Re­pub­lic.

Five years on, more than 1,000 Brits have re­ceived the pi­o­neer­ing treat­ment on the NHS. But un­til last year they were sent abroad.

STRAIN

Daisy’s fam­ily were told the NHS would cover travel to the UF Health Pro­ton Ther­apy In­sti­tute in Jack­sonville, Florida, where she would stay for up to two months.

It meant tak­ing older daugh­ter Scar­lett, 12, out of school while An­drew and Lynne, who works for the NHS Pre­scrip­tion Pric­ing Au­thor­ity, went on leave. Lynne said: “While ac­com­mo­da­tion and flights would be funded, liv­ing ex­penses and time off work would have crip­pled us. It added a lot of emo­tional and fi­nan­cial strain at an al­ready hor­ren­dous time.”

So it was with per­fect tim­ing that The Christie Hospi­tal opened its doors and Daisy is among 750 pa­tients to be treated this year.

She was zapped with the treat­ment 28 times over six weeks, each ses­sion last­ing 90 se­conds.

Daisy was se­dated and held in a body mould which was ro­tated as a se­ries of high-en­ergy pro­tons tar­geted the tu­mour. It was tough and Lynne said: “At first Daisy would scream when­ever they took her for se­da­tion.

“She’d take her toy down there and sit on my knee and just cry, it was very hard to see. But the nurses were in­cred­i­ble and did a great job calm­ing her down, play­ing all these games to dis­tract her. Af­ter­wards, I’d pop her on my knee and give her a cud­dle.”

Daisy was dis­charged from The Christie and had two fur­ther rounds of chemo at New­cas­tle’s Royal Vic­to­ria In­fir­mary last month. But she had a se­ri­ous in­fec­tion from a re­ac­tion to tubes in­serted into her body. Lynne ex­plained: “It was hor­ri­ble. Her body just re­jected the tubes as for­eign ob­jects. She had se­vere lower back pain and be­gan con­vuls­ing.

“We were ter­ri­fied her body was just so weak after ev­ery­thing, but the staff got it un­der con­trol.”

Fi­nally, the day came when Daisy’s treat­ment was over. Lynne added: “It was a won­der­ful mo­ment when she rang the hospi­tal’s bell to sig­nify the end of her treat­ment.”

Then, after an ag­o­nis­ing three-week wait for re­sults, MRI and CT scans and kid­ney tests re­vealed the tu­mour has shrunk from 8cm to 2cm – and Daisy is fi­nally in re­mis­sion. Lynne said. “Of course our anx­i­ety that Daisy’s cancer will re­turn will al­ways be there. But we are just so grate­ful she’s still here.”

The fam­ily is now sav­ing for pos­si­ble fu­ture care for Daisy, who has been left in­fer­tile and with just one func­tion­ing kid­ney.

The tod­dler is back at nurs­ery but will de­fer start­ing school by a year. Be­fore that will be a big party as Daisy turns four next month.

Lynne and An­drew heaped praise on NHS staff and the treat­ment it­self. They are also rais­ing cash for the chil­dren’s on­col­ogy ward at the Royal Vic­to­ria In­fir­mary.

An­other pro­ton ther­apy cen­tre is due to open at Univer­sity Col­lege Lon­don Hospi­tal next year. And pri­vate provider Pro­ton Part­ners – which has three UK cen­tres – is also set to ac­cept some NHS re­fer­rals.

Lynne added: “It’s just amaz­ing the treat­ment is now widely avail­able for so many. It is truly life-chang­ing.”

THRILLED Par­ents and Daisy, three IN THE PINK Daisy ‘has been bounc­ing off the walls’ says mum

I’M SMILES BET­TER... Thrilled Daisy is well again Pic­tures: JOHN GLADWIN

TOUGH JOUR­NEY How Sun­day Mirror fol­lowed coura­geous Daisy’s cancer bat­tle

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