Friday 17 August 2012

Twins whose courage will break your heart: For 13 years, their bond has been unbreakable. Now Rachel is battling one of the world's rarest cancers - and her brother's fighting her corner with a devotion to humble any adult

Seeing my twins Rachel and Jordan snuggled up on the sofa together watching TV, our Labrador pup Fizz at their feet, I am suffused with the most extraordinary range of emotions: pride, contentment and terrible sadness.Jordan has his arm draped protectively around Rachel. Aged 13 and already 5ft 10 in tall, he dwarfs his twin sister, a tiny 4ft 6 in. And the look in his eyes is of such love and devotion, I have to glance away so he won’t notice the tears welling behind my eyes.Because, as I watch them snuggle up in the living room of our home in Rotherham, South Yorkshire, I can’t help but remember the moment 13 years ago that I brought them home for the first time.



As I put them down to sleep together in their cot, my precious twin babies, I naturally imagined they would be linked together for ever. I pictured them growing up side by side, always looking out for one another.And that’s the way it always has been. Of course, like most young brothers and sisters, they have taken each other for granted and, as the years rolled on and hormones kicked in, they have often fought like cat and dog.

But their bond is palpable and unbreakable.But now their paths have diverged in the most tragic way imaginable. Rachel has cancer. She was diagnosed last September with an incredibly rare brain tumour.


While Jordan is fit and healthy, we don’t know what the future holds for her. All we can do is hope and pray.While Jordan races off to play with friends, Rachel is so weak that she needs a stairlift just to get upstairs. When we go shopping, she’s in a wheelchair. She can’t even walk to the end of the road, let alone ride a bike or do any of the sports she once loved.I have tried to keep the seriousness of her condition from them and am determined to stay positive. But moments like that gentle embrace remind me how precious their physical closeness is.Sadly their father and I parted before they were born in July 1999. We weren’t married and he decided to play no part in their lives. As a single mother, I was determined my children wouldn’t miss out on a thing.I gave up my highly-pressured job as a paramedic when they were toddlers, only returning to work, part time, in 2007.

Although money has always been tight, I took Rachel to ballet classes when she was four. She showed real flair, rapidly progressing to jazz and tap. Jordan, meanwhile, is an all-round sportsman, passionate about football, cricket and rugby. When I wasn’t sitting with the other mums watching a tap class, I would be on the touchline, cheering Jordan on.Rachel was always the sensible, more cautious one. When I took them to school for the first time, it was Rachel who clung to my hand and Jordan who raced off without a backward glance.It was Jordan who was forever in and out of hospital. He was just three when he made his first visit to casualty.

He’d cut his chin open, racing out of the car so he would be first into the swimming pool. You couldn’t ever imagine Rachel being so daft.Another time, he was pelting around the school playground when he ran straight into Rachel. She ended up with two black eyes. Jordan was devastated. He couldn’t bear the thought he had hurt his sister.It was the first time I realised just how protective he was of her. After that, no one dared upset her at school or they’d have to answer to him.As they got older, inevitably, their interests diverged. A few years ago, Rachel developed a love for clothes and an enthusiasm for everything pink. Jordan was utterly baffled.


But they have always shared a love of sport. Last summer was typically action-packed. I took them on a Bear Grylls-style camping holiday in North Yorkshire. The highlight was cooking sausages over a fire they’d built themselves. They rode mountain bikes and went puddle-jumping.We then hired a narrowboat and pootled up and down the Bedfordshire canals for a week. Rachel learnt to steer, while Jordan operated the locks. Then, just after their 12th birthday in July, Rachel went to a Christian summer camp in Suffolk with a girlfriend.

It was the first time she’d been away without me and Jordan. She missed us but blossomed. When I picked her up, she seemed somehow more confident and outgoing.I was delighted to see my little girl turning into a poised young woman. She had been back at school — Wickersley Sports College, near Rotherham — for two weeks when she started suffering crippling headaches that made her physically sick. I put it down to hormones, at first, but then she just kept getting them.I was asleep in bed after a night shift when the school rang me. It was September 23. I could hear Rachel’s worried little voice in the background at the other end of the line: ‘Please don’t wake Mummy. She needs her sleep.’Rachel had been found with her head down on her desk, crying. I jumped out of bed and raced to pick her up.

As she walked to the car, she started weaving from side to side. As a trained paramedic, alarm bells rang. I knew this was serious.I took her straight to the doctor’s. He took one look at her and arranged for her to be admitted to Rotherham District Hospital for neurological tests. By now panic was mounting, but I tried to stay calm for her sake. ‘You will be fine, sweetheart,’ I promised.It was a mantra I kept repeating as scans showed she had a brain tumour. It was so large, fluid was unable to flow freely around her brain, hence the headaches. This was potentially deadly. Rachel was taken by ambulance to Sheffield Children’s Hospital, too sick to understand what was going on. I held her hand all the way.

 My parents live nearby and are very close to the children. I broke the news over the phone. They’re in their 70s but rushed straight to the hospital with Jordan.Together we explained to Jordan that Rachel had a lump which needed to be removed — I wanted to be honest but protect him from the full details.‘Will she be all right Mum?’ he asked.‘She will need a lot of operations but it will all work out,’ I promised.The following morning Rachel had life-saving surgery to drain the fluid from her brain. The surgeon also took samples of the tumour for biopsy.With the pressure relieved, Rachel looked instantly better. Although she had to stay in hospital, I began to hope the tumour would be benign. Jordan visited every day. He missed his twin desperately and constantly asked when she was coming home.But then, on October 4 — two weeks after the biopsy — the results came back and my world fell apart.Rachel had a papillary tumour of the pineal gland — a gland of the endocrine system, which produces several important hormones including melatonin. No one else in Britain has been diagnosed with a tumour like it and there are believed to only be around 40 other cases in the world.Apparently, the tumour had been growing undetected for years. Rachel would need surgery to remove the tumour, which was now as big as a grapefruit, followed by intense radiotherapy.As the surgeon spelled out the risks — from death to brain damage — it seemed unbelievable that I was going to have to put my little girl through such suffering. But there was no choice. Surgery was her only hope.Rachel’s courage astounded me. Although I didn’t go into details, she understood this was a huge and dangerous operation. By now she had named her tumour Gertrude — she refused to use the word ‘cancer.’‘It’s time for Gertrude to go,’ she said firmly. The operation was scheduled for the following day.I tried to hide my terror but, as Jordan said goodbye to his sister, he held on to her hand just a little longer than normal and I knew they both sensed this might be the last time.The operation took 13 hours. Rachel pulled through. But she was terribly ill and, despite their best efforts, the surgeons only managed to remove half the tumour.

The weeks that followed were a nightmare. I was lucky enough to have a room in Treetop House — a home from home in the hospital for families of sick children. It meant that, when I wasn’t with Rachel, I could get some rest. Meanwhile Jordan went to stay with friends. I felt torn in two. Both my children needed me.Rachel was terribly sick. But the effect on Jordan of seeing his sister so poorly was heartbreaking.One day he found me feeding Rachel because she was too weak to raise a spoon to her lips. He ran out of the room, unable to bear seeing his sister so ill.

For the first time ever, he couldn’t protect her. ‘Is she going to die Mum?’ he asked one day.‘Darling, we are all going to die some time,’ I said. ‘The doctors are doing all they can. And we both have to be strong for her.’What else could I say when the truth was so stark and so terrifying? On November 9, Rachel had a second major operation to remove the remainder of the tumour. It was a success. But there was yet more treatment to come.

Three weeks later, once the scars had healed, Rachel started a six-week course of intense radiotherapy to kill off any stray cancer cells. The effects were devastating. Rachel was so sick, she couldn’t even keep the anti-nausea medicine down and was so weak, she could only stagger a few steps before collapsing in my arms. Nevertheless she was determined to get to the end.And she was thrilled when she was discharged from hospital just before Christmas.

We were together as a family at last. Finally on January 24 the treatment ended. Thankfully, a scan eight weeks later showed she was cancer-free.Two more scans at three-month intervals showed the same. It’s the best we can hope for. Because the cancer is so rare, it’s impossible to predict the future or say for certain that Rachel has beaten it.Rachel started school again in February. She finds it hard — her short-term memory is very poor. We hope this is just a temporary effect of surgery.She is still terribly weak. She lost nearly four stone while she was in hospital, but every day brings a new improvement.Her maturity has astounded me. She has never once complained that Jordan can do the things she can’t. To cheer her up, I bought a puppy. Jordan walks Fizz while Rachel does all the cuddling.

It seems fair.Meanwhile, Jordan shows compassion way beyond his years. He’s experienced a whole spectrum of emotions. He’s been angry that his sister is ill, jealous that she’s been getting more attention than him and guilty that he’s well and she’s not.It’s been incredibly tough but he’s worked through it all. It was the twins’ 13th birthday last month. We had a family barbecue. And as I watched Jordan rush to get plates of food for Rachel, I couldn’t help but feel that — however hard the last year has been and whatever the future holds — they are so lucky to have each other.

No comments:

Post a Comment