My little girl is such an inspiration
By John Woodhouse
To be told your child has cancer is every parent's worst nightmare. John Woodhouse meets a driven mum determined to face the intruder head on – and even with the occasional smile
JANE Powell has suffered a common indignity on the day I meet her – she's dropped her phone down the toilet. But she's strangely relaxed about it. "Since this happened with Leah," she says, "I think I've probably been the most chilled out I've ever been in my life. You look at stuff in a different way – certain things don't bother you anymore."
'This' is rare tissue cancer rhabdomyosarcoma. Leah was 12 when it first manifested itself last year as a tumour in her right arm – just months after Jane had given birth to her baby brother.
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Leah was, until then, a typical teenager – "out with her friends, into music, make-up, getting stroppy!" She was also doing well at school, and very sporty. "She was hoping to get on the athletics team," says Jane. "Funnily enough, they actually wanted her to be a thrower of some sort – javelin or shot putt." She pauses. "She can't even pick a fork up properly now."
Leah, now 13, spends her days not at school but either at home or at Manchester Children's Hospital. So used to chemotherapy is she – the youngster has a weeklong treatment every three weeks – that, says Jane, it's almost become a "safety blanket".
She ponders that Ronald McDonald House, the building over the road that provides accommodation for families and patients, "is one of the best and cheapest hotels I've ever stayed in!" "It's home from home," she says, "actually it's nicer than home!"
Jane is, it's fair to say, a remarkable woman. The most terrifying of scenarios, one so life-shatteringly awful most of us could not even bring ourselves, even for a second, to imagine it, is met with steadfast determination, self-effacing humour, and not a trace of self-pity.
By so doing, Jane mirrors the strength of Leah, a girl who, this time last year, would have spent a Saturday round town with her mates. Now her illness – her 11-tablets-in-one-go illness – confines her largely to her bedroom. Her main escape is to be hooked up to a machine. Although the other-worldly delight of an Olly Murs concert beckons.
"We've always been very close," says Jane, 41, of Leek, "and it's brought us a lot closer. She relies on me now for everything.
"She's lost the use of her right hand effectively, because of the damage that was done during the removal of the tumour. She's limited in what she can do now, like I have to cut some of her food up."
Leah's diagnosis was, as one would imagine, an absolute time-stood-still moment. In the ensuing months it's prompted wildly varying emotions. "First of all," says Jane, "you go through this guilt of 'what have I done wrong? Why has my child got this horrible disease? Could I have done something different? Was it something they had to eat or something they were exposed to? Or something I've done?'.
"For myself it was 'why didn't I notice it sooner?'. We'd left it a few weeks before taking her to A&E. We took her to the doctor and they were slightly unsure. They thought it was a sports injury, which anybody would. She's thrown a javelin, so that's exactly what we thought.
"And this is the thing with cancers, they're quite often mistaken for other things. There's five pointers they tell you to look out for. Like losing weight – she never lost any weight. Leah didn't have any of those symptoms."
With the condition confirmed, Jane changed again. "You go into autopilot," she explains. "You think 'if I stop, I'm going to break down'. And I did get to a point where I didn't stop – but I did break down. And I thought 'right, that's how much I can deal with – that's how far I've got without accepting all the help'.
"You've got to accept that you've got to accept the help – and that's what we've done. We're still very strong-willed and try to do as much as possible on our own, but we have had people help us out as well."
Is it a mum's instinct to want to do the protecting and helping herself? "Yes, and my personality is that I'm a helper, and a doer, rather than the other way round.
"I don't sit back and wait for things to happen. I'd rather go out and make them happen."
Single mum Jane is, by her very nature (she runs a toy shop in Leek called Over The Rainbow) an upbeat person. But occasionally she'll be overtaken by a wholly understandable rage. "'Why me?'" she ponders. "You do get that. It does sometimes make you really angry. You'll see somebody and think 'why isn't it you?' – it's not so much 'why is it her?', it's 'why isn't it you?'. You wouldn't wish it on your worst enemy but there are some people you just think . . ."
Premiership footballers by any chance? "No," she laughs. "Leah met Darren Fletcher (of Manchester United) – he was very nice."
Negativity is rare. The changes she feels in herself are predominantly positive. "I'm a stronger person," she says. "You notice the same with all the parents on that ward. You can recognise a new one because of the way they are – how upset they are. I've seen parents devastated because they've just been told that their child's got something wrong with them – quite often I'll offer them a drink and then get talking to them. It's very difficult for them to even say the word 'cancer'. But by saying it, it's like accepting it. Then you can say, 'well that's what my child's got', and you can help them.
"I remember the lady who I spoke to, the one who offered me the drink. Leah's is such a rare tumour, to find out someone else has got the same as your child, it's almost like a relief that you're not alone. You do draw strength from other families.
"There's one dad there who can have me in tears just reading his blog, because he's so focused on his family. His little girl's just had a liver transplant – she's got liver cancer. They're the most amazing family I've ever met.
"You almost become institutionalised," she adds. "The hospital is your safety net. You draw strength from the other parents. There's a help group there as well – of parents who've been through it, and come out the other side. It was lovely to speak to them and hear their experiences of life after treatment.
"I'm hoping that Leah will make a full recovery – and I want to be there to help other people as well."
Leah's emotions are in sync with her mum's. "She has up and down days," says Jane. "Some days she accepts it and is quite positive, and then another she'll be asking me a million questions. She'll want to know what's happening next – and I don't know what's happening next.
"And then she gets really angry because she can't do what she wants to do. Whereas other children having similar sorts of treatment are able to go and do things like bowling, Leah's limited because she can't use her right hand. And then she feels really isolated. I'm not isolated because I can go out and leave her with somebody else – I can go off and do stuff. But she can't. She can't go and meet her friends. Especially now she has a wheelchair – her friends would not manage her wheelchair at all. Even I find it difficult."
A recent trip to Oklahoma for groundbreaking Proton Beam Therapy ended in frustration when doctors found further tumours. Leah's now returned to Manchester Children's Hospital where she's undergoing a new course of chemotherapy.
"The very first chemo she went for," says Jane, 42, "she didn't want to go. She didn't want to leave the house. She was so scared. You hear so many really bad stories – people getting sick, and being very weak, and all the rest of it. She was quite ill that week.
"The second time she went, again she was quite nervous. But then it became normal, part of life – 'chemotherapy's due – we're going – fine'.
"When we came back from America, with the new chemotherapy she had more energy. We decorated the windows in the hospital – she had great fun doing that. Hospital's almost like a safety blanket. When she's building up to chemotherapy – she goes every three weeks –her body knows it's due.
"She'll get aches and pain and feel a bit off. Sometimes she wants to get there and have the treatment. Other times she doesn't want to because she's scared. It's being scared of being sick.
"But she finds it helpful to meet children in a similar position. There's a few the same age as her. Some of them have finished treatment and are well on the way to recovery.
"I was scared first time as well," she adds, "because you don't know how it's going to affect them. I can't say Leah's been lucky, because she hasn't been lucky – she's got cancer – but she is one of the lucky ones that it hasn't really knocked her flat.
"This new chemotherapy there's definitely a difference, but then the pain has increased – as the tumours have spread.
"The pain in her legs is what bothers her the most. We had to have the paramedics out she was in that much pain."
The Powell family has pulled together to make life as easy as possible at this tumultuous time. Big sister Danielle, for instance, looks after Leah three days a week. "She felt it was her way of dealing with it," says Jane, "by helping rather than continuing going out to work. She's unpaid, she doesn't claim benefit, she just did it out of pure goodness of her heart."
Brother Joshua, 22, is back at home too. "Two years ago with Josh I was really struggling getting along with him," says Jane, "typical growing up things. He was trying to make his mark on the world and we clashed.
"Even when he was a youngster I clashed with Josh. I suppose in some ways he's like me! Now he's a completely different person. He's up in the night with Leah – if he hears her shout out he's up – 'what's wrong?'. Everybody has helped."
To add to the family's woes, Josh too is now temporarily unable to use his right hand after severing the tendons defending himself from a knife attack.
Jane takes this in typically positive style. "I just don't want anything to go wrong with me or Danielle!"
"You try to keep things as normal as you can," she says. "Some days you want to be able to just sit and have time as a family. Like yesterday we just sat, all of us, all four children, and watched telly – and argued like normal families do! And that's nice.
"But generally we don't have a day that isn't busy. I say to some people who are looking at our situation from the outside 'take two days in my shoes', because sometimes I get people saying 'oh, you haven't rung me back' or 'you haven't messaged me back', 'you're not letting me know what's going on'.
"And if they actually took a walk in our shoes, they'd understand why. There's not many minutes in the day that we have, with juggling everything."
Perhaps the hardest lesson Jane's had to learn is that, when it comes to cancer, a lot of the time all you can do is wait.
"Before this I've got really anxious and irritated because things aren't happening quickly enough," she admits. "And you learn that when you've got a child with an illness you've just got to wait for things to happen – you've just got to go with the flow.
"In fact, a consultant at Christie's, he told me to throw away my diary, because I'm a planner, I like to know what I'm doing, when I'm doing it, etc. He said 'throw your diary away because you're not going to be able to plan anything now – just live for the day – plan good things to do in advance, but don't expect to do them'.
"And that's probably what's helped me – by saying 'right, if something goes wrong, it goes wrong – we'll deal with it, and we'll change plan'. You learn to adapt very easily. You have to fit in with how Leah feels. If she doesn't feel right, and there's a party, then you don't go to the party'. She'd better be OK for Olly Murs though!"
In this complex world of blood counts and platelets, Jane finds comfort fund-raising for Ronald McDonald House too. The facility costs £500,000 a year to run. Without it, treatment for many would be untenable. Jane, for example, can stay there, not only with Leah, but with ten-month-old Marek too. "The fund-raising is part of my way of coping," she says. "I feel like I've got to give something back."
You can't help but be inspired by Jane. Facing life's most inexplicably random injustices not just with spirit, but with a smile. "Perhaps it's something to do with Leah's tablets!" she says.
"You've not been taking them?" I ask.
"No," she says, "but I've been thinking about it!"
Jane is staging a Mad March Family Funday and Fundraver, at The Foxlowe, Leek, on Saturday, March 30, midday to midnight, to help raise funds. Anyone wishing to contribute auction/raffle prizes should contact Love4leahfundraising@gmail.com; Facebook Love4Leah; twitter @Love_4_Leah.