Real life: How much more could my boy take?

Danielle Harper’s son has been through more than most peo­ple have in a life­time

Woman's Own - - CONTENTS -

As my son Oliver, six, ran a thread of mul­ti­coloured beads through his fin­gers, the look of con­cen­tra­tion on his face made me smile. Sit­ting on the liv­ing room car­pet, he looked so small sur­rounded by the thou­sands of beads, all care­fully and metic­u­lously threaded onto pieces of string. For Oliver, each bead marks a tri­umph – some­thing that he’s over­come and beaten with his sheer re­silience and courage.

Oliver was just a year old when I first no­ticed that some­thing was dif­fer­ent about him. While many other chil­dren his age could walk, Oliver strug­gled to even pull him­self up. His sis­ter Ma­cie, then five, had been walk­ing and talk­ing at his age too, so nat­u­rally I was con­cerned that Oliver was fall­ing be­hind.

I’d bro­ken up with the chil­dren’s father shortly af­ter Oliver was born, but my new part­ner Sean, 29, was wor­ried too.

A rare con­di­tion

‘Come on, lad,’ he coaxed, try­ing to get him to take a step. But as the weeks passed, my lit­tle boy didn’t seem to be get­ting bet­ter.

Af­ter tak­ing him to see my GP, in Fe­bru­ary 2014, we were re­ferred to Ad­den­brooke’s Hos­pi­tal in Cam­bridge for some tests. I was ex­pect­ing bad news, but the re­sults were dev­as­tat­ing. As a con­sul­tant held up Oliver’s brain scan to the light, I ac­tu­ally shud­dered. You didn't need a med­i­cal de­gree to spot what looked like 10 lit­tle black holes in his skull.

‘Oliver has Langer­hans cell his­ti­o­cy­to­sis (LCH),’ the con­sul­tant said. It is a rare con­di­tion af­fect­ing only five in a mil­lion peo­ple. He ex­plained that Oliver’s Langer­hans cells – a type of white blood cell found in the skin that nor­mally helps fight in­fec­tion – had over­pro­duced and spread around the body. ‘They’re at­tack­ing him from the in­side out,’ the con­sul­tant con­tin­ued.

De­scribed as a ‘can­cer-like’ con­di­tion, it had al­ready started to eat holes in my lit­tle boy’s brain. The words just seemed to echo over and over in my head and I couldn’t make sense of them. There was only one thing that I wanted to know. ‘Will he be OK?’ I asked, my voice break­ing. But no­body could give me the an­swer I was so des­per­ate to hear. In­stead, Oliver was given steroids and put on a drip to pump the chemo­ther­apy drugs into his blood stream.

That night I slept be­side Oliver in the hos­pi­tal ward while Sean stayed at home with Ma­cie. As he slept, I stroked his hair and prayed for him to get bet­ter.

‘My once lively boy be­came so weak’

Calm­ing beads

Over the next few weeks, Oliver be­came ex­hausted from chemo and my once happy, lively lit­tle boy got so weak. I felt torn be­tween Oliver and Ma­cie too, try­ing to di­vide my time be­tween the hos­pi­tal and home, des­per­ate to be there for both of them.

‘Why is Ol­lie still poorly?’ asked Ma­cie dur­ing a hos­pi­tal visit that April. ‘Isn’t his medicine work­ing?’ Try­ing to ex­plain some­thing so se­ri­ous to a child wasn’t easy and, although I tried to be hon­est, it only made Ma­cie more con­fused. ‘I want him to come home,’ she cried, un­con­trol­lably.

I let her stay by Oliver’s bed when­ever he had tests done and she liked hold­ing his hand when he was given in­jec­tions. It made her feel like she was con­tribut­ing to him get­ting bet­ter, and it re­as­sured Oliver too be­cause he seemed a lot calmer when Ma­cie was there.

But one day, when I was at the hos­pi­tal on my own with him, he writhed in pain from hav­ing nee­dles poked into his chest and thrashed about in a des­per­ate bid to get away. It was then that a nurse brought out a cou­ple of coloured beads. Oliver’s

eyes im­me­di­ately fixed on the lit­tle, shiny blue and white beads in her palm as she ex­plained they were for him.

‘Ev­ery time you have a med­i­cal pro­ce­dure, you get a bead,’ she said. ‘You’ve earned quite a few al­ready.’

She threaded a white bead on to a piece of string, ex­plain­ing it was for his chemo­ther­apy and a blue bead for his steroids. Then she pulled out four lime green beads for ev­ery time he’d had a fever and eight black beads to rep­re­sent his in­jec­tions. Oliver was so fix­ated on them, he started to calm down.

The nurse later told me that ‘Beads of Courage’, as they are known, are of­ten used as tools to ease the anx­i­eties of chil­dren in hos­pi­tal. So, when­ever Oliver was fright­ened I spoke to him about the beads. ‘What colour do you think you’ll get if you’re brave to­day?’ I'd ask.

Oliver de­served each and ev­ery one that he earned and he loved re­ceiv­ing them, zip­ping them up in his Peppa Pig pouch af­ter ev­ery pro­ce­dure.

By July 2014, Oliver’s con­di­tion had started to im­prove and af­ter fin­ish­ing chemo, he was al­lowed home.

A few days later, he let go of Ma­cie's hand and walked across the liv­ing room all on his own. Aged two, he’d fi­nally taken his first steps.

‘You did it!’ I cried, tears of happiness in my eyes. For me, those steps marked the start of Oliver’s fu­ture be­cause a few weeks later he was talk­ing, and what started out as a lit­tle bab­ble of non­sense, quickly turned into prop­erly formed words. ‘Mummy,’ he chuck­led from the sofa, as we sat and watched car­toons.

I couldn’t have been hap­pier, but just as we were set­tling into a rou­tine, Oliver’s eyes started to look pro­trud­ing and swollen.

When I took him back to the hos­pi­tal, doc­tors con­firmed the Langer­hans cells had started to at­tack the soft tis­sue around his eyes. Tests re­vealed the con­di­tion had spread to his liver and gut and he was put on an­other course of chemo­ther­apy.

‘I thought it was over,’ I cried to Sean, an­gry for al­low­ing my­self to be­lieve that ev­ery­thing was OK.

This time treat­ment caused Oliver’s dark brown hair to thin, but no mat­ter how weak he was, he al­ways man­aged a lit­tle smile when he was given a new coloured bead, and was so ex­cited when I threaded them on the string.

Af­ter in­ten­sive chemo­ther­apy failed to make a dif­fer­ence, in Septem­ber 2015 he be­gan a new drug as an out­pa­tient at Great Or­mond Street Hos­pi­tal, Lon­don. It had fewer side ef­fects than the chemo­ther­apy, so it didn’t make Oliver so frail.

Un­cer­tain fu­ture

In Septem­ber 2016, Oliver, then four, started school and although he had a lot of time off for treat­ment and was much smaller than the other chil­dren, he made plenty of friends.

And he loved show­ing off his Beads of Courage, ex­plain­ing what each one meant. ‘These ones are for all the in­jec­tions I’ve had,’ I heard him tell a lit­tle girl in the play­ground.

But although Oliver’s treat­ment has al­le­vi­ated a lot of the ef­fects of his con­di­tion, he’s still not com­pletely bet­ter. We don’t know what the fu­ture holds, but I tell him ev­ery day how brave he is and how proud we all are of him.

Oliver has more than 2,600 beads and he still loves to get them all out and play with them, but while I’m so grate­ful for the beads for help­ing him when I couldn’t, I don’t need them to tell me how re­mark­able my lit­tle boy is – he has proven that all on his own.

l To find out more about Oliver’s con­di­tion and do­nate to char­ity His­ti­o­cy­to­sis UK, visit Danielle’s fundrais­ing page at just­giv­ing.com/ Danielle-harper2/

‘I tell Oliver ev­ery day how proud we are of him’

Oliver’s spent so much time in hos­pi­tal

So pleased with his bead col­lec­tion

A cud­dle from Mummy for a very coura­geous boy

Hand in hand with big sis­ter Ma­cie

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