Real life: How much more could my boy take?
Danielle Harper’s son has been through more than most people have in a lifetime
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’