Our amazing Rose

The last post

2011-01-19T22:57:00.006+04:00

Rose's life was remembered and celebrated on Saturday afternoon at St Stephens Church in Dulwich where Rose had sung her first Christmas carol concerts, her first Harvest Festival services, with over 500 people who loved her. We raised the roof with our love for her through words and music and then we raised the roof for the Bone Cancer Research Trust - a humbling total of £6225 was raised in an hour and still the envelopes are coming in. There are no words to thank all our friends and family who came from very far and very near and gave so generously with their time, their love and their money. We brought Rose back to life for an afternoon and I only wish we could do it all again. Every day.

I miss this blog - I miss sharing every dark and darkly funny moment of the last few weeks, I miss the relief of opening up about our pain, I miss Rose more than is imaginable and I have absolutely no idea how or where we go from here. But we will always remember the love and support we shared on Saturday with so many of you and the memory of it will give us the courage to go on. Thank you endlessly from us all.

PS Several people have asked me if they could have a copy of the tribute read on our behalf so bravely by Andrew on Saturday. I thought instead I would put it on the blog as it seems so entirely appropriate a place to put it. So here it is.

"We have had hundreds of lovely letters in the last few weeks in which many of you have written of your own memories of Rose that I almost wonder if we are the best people to write this tribute – we have to look a long way back to find memories of the really good times with Rose, which seem to be at your fingertips, and to remember her how she used to be before she became defined by having cancer. How to bring her back to life with just words and memories?

When Rose came along in December 2001 we already had Felix who was nearly four, and we were pretty confident that we were excellent parents. We had a baby girl now and we brought her home, over-joyed, and looked forward to being excellent parents - squared. It soon became apparent that Felix was just a very good baby – and that Rose really, really wasn’t. Overnight she turned our ordered lives and Gina Ford routines upside down, ripped up our parenting manual and set about bending the world to her will. We were mostly too awestruck or exhausted to do much in the way of bending it back again and family life was resumed with Rose firmly in charge.
She was soon a two foot dictator in a Disney outfit, clicky-clacky heels and a feather boa and the attitude was seriously scary – in a stand-off with her during one argument I remember floundering, speechless, wondering how on earth to rein back this child of mine. ‘Shall I go to the naughty step?’ she suggested helpfully. She dressed the kittens in Baby Annabel outfits, shut the dog in her wardrobe where she could torture him in private, was pulled giggling from her hiding place in a tumble dryer in a department store hours after we had forced security to close the shop, painted her bedroom carpet in a range of nail varnish colours, ran into the school office at Ducks and threw herself at a ringing telephone ‘Good morning, Ducks, Rose Allocca speaking,’. ‘It’s not all about you, Rose,’ said Simon to her, very firmly, after another domestic atrocity had been committed. ‘Oh yes, it is,’ she shot straight back.

She got a bit bigger, spent a bit less time on the naughty step and started school. Her verdict after day one – ‘it was really fun, thanks, but I’m not sure if I’ll go again’…. Here she worked very hard – less so on learning to read and more so on developing her natural love of the limelight. At the end of her first term in Reception she came home aghast after the casting for the school nativity play had taken place. ‘I am Joseph,’ she announced, desolate. ‘It’s a good part, Rose’, we all tried to tell her but she cried all night and went back to school with an ominously determined expression. That afternoon she strapped herself happily back into the car. ‘I am Mary now,’ she announced triumphantly. Welcome to my world, I wanted to say to her poor teacher.

Never knowingly under-accessorised she would never leave home without an assortment of handbags, lipsticks, hairbrushes, hair slides and compact mirrors for regular checking of her appearance. She averaged several outfits in one day, sometimes several outfits before school and none of them her uniform. Rose commanded every room she was in – friends, cousins, Felix all pretty much fell obediently in line with her games whether it was putting on a fashion show, being a pop star, song writing, den-building, dressing-up, or, the top favourite, marshalling her classroom of Build a Bears in her teaching games. Armed with notebook, handbag, many, many pens, spelling tests and maths questions these stoical bears were endlessly put through their paces by this most rigorous of teachers, so eager to be the grown-up she was never going to be.

And alongside her many crazy games there was so much more to Rose – learning to swim, Justin Bieber, High School Musical, ballet lessons, nail varnish, make up, fashion shows, learning to read, learning to ride her bike, learning to ski – she was full on, fabulous, fearless, funny, a showstopper of a child, cramming every second full of life as if she knew exactly how precious each healthy day was becoming.
And then suddenly, in a heartbeat, in the middle of all this fabulousness she was ill. Not Calpol, day-off-school ill but seriously, heart-stoppingly ill and once again she turned our lives upside down. Surely there had been a mistake, they’d got the wrong child, not our robust Rose, surely this is all happening to ANOTHER FAMILY we wanted to scream at passing doctors but they were all too busy booking chemo, bone scans, surgery to stop. And as we floundered, Rose, with her incredible strength of character, taught us every day how to get through it. We had taught her all the little things in life which now seemed so insignificant – how to brush her teeth, to button her clothes, to cross a road, to ride her bike, to read a book. Now she taught us the big stuff. As we watched her unbelievable bravery she taught us the courage to face every new appalling day, to cope with the terror and the tedium of living on a cancer ward. As she threw herself into hospital life, making friends, charming the nurses, she taught us the importance of seeing the funny side of everything when absolutely nothing is funny anymore. She taught us to have fun whenever you can because you don’t know what tomorrow is bringing, to live in the moment, that the four of us in a room together - wherever it was - was now more precious than all the Christmases, birthdays and holidays we’d ever shared. She taught us that life is randomly cruel, fragile, short but that if you don’t look too far ahead or ask too much it can still be good. She taught us that the love we have for our children – that blasé love we had taken so for granted - is the world’s greatest gift but sometimes you will pay the highest price for it. We stood on the sidelines of her suffering and watched her bear the pain, the fear, the frustration of her illness for so long, in hospital and at home, and we thanked God for her spirit then, for her determination, for the force of her personality. Surely a child such as this one would not be easily overcome.

But she was. In the end.

They told us in the beginning what a rare cancer it was that Rose was suffering from. But how rare can it be when Rose lies in Camberwell Old Cemetery next to Lottie, a bone cancer casualty from her own school, who died last summer. We came to know and care about many children during Rose’s treatment – too many of whom have since also died. So not rare enough is the answer. One can believe in chosen children going to a better life if that is your faith or you can believe in the urgent need for further medical research, more successful drug therapies. Two things would have saved Rose’s life – earlier diagnosis and different drugs. A niggling leg pain that came and went but didn’t stop Rose in her tracks rang no alarm bells for us. But it would now and it will for all of you – raising public awareness about this lethal cancer is half the battle won. The answer to the other half may lie with a new drug called Mepact which has a proven track record in Europe and the US of raising survival rates in osteosarcoma by as much as one third. It has recently been rejected for general public use by NICE and is only available privately in the UK. The Bone Cancer Research Trust plays an invaluable role in both these areas – articles read and written, research projects funded, lobbying and petitioning government on behalf of its supporters and alongside the medical profession to improve the outlook for families to come, to support families today.

Our hearts contract with fear for the families that will be diagnosed this year, this month, this week who will all be just beginning the awful journey that is drawing to a close for us. Journeys that for far too many of them will end in a church like this one with broken families picking up the pieces of their lives. In recent weeks before Rose died we railed against the unfairness of it all, the enormity of her suffering and how we regretted every awful day of it. Of course we know now what we did not, could not know then – that we would go through every minute of it all again for one more day with Rose. We can’t have that day but it’s not too late for the families to come. Every heartbreaking blog on the BCRT website tells a story you don’t want to ever be a part of but you’re all a part of this one and we ask you, shamelessly and with absolutely no pride, to support this charity today and give to the BCRT in memory of Rose. Rose’s cousins will be at the church doors holding collecting tins and there will also be a collecting tray for any envelopes which should be in your order of service – thank you in advance for any donations given, for all the support we’ve had and for coming today to say goodbye to our lovely Rose."

Friday 10th December

2010-12-11T01:11:00.004+04:00

There is lots to do and organise - which is helping us all to put one foot in front of another. Rose will be buried on Monday at Camberwell Old Cemetery in a family ceremony but we have now confirmed details for her memorial service. Please put it in your diaries and come - we want it to be a celebration of her life, hopefully family friendly and if you knew her and loved her - or just want to support us - then we would love you to come.

It is taking place at St Stephens Church, College Road, SE21 7HN at 2pm on Saturday 15th January and you are all invited to join us afterwards in the Lower Hall at Dulwich College, College Road, SE21 7LD for tea. We are having family flowers only at the funeral but there will be a retiring collection at the memorial service for the BCRT. The College is about a ten minute walk or a two minute drive from the church and there is reasonable parking at both.

Without all the cards, flowers, letters, messages, food drops and gifts that we have had this week and endlessly in the last weeks, months, years this would have been even harder. The support has been incredible. Thank you all so much.

Rose Isabella Allocca 27.12.2001-7.12.2010

2010-12-06T16:01:00.010+04:00

The post somehow I never thought I would really write.

Our brave and beautiful Rose died in her sleep in the early hours of this morning with great dignity and finally with great calm. The three of us who had welcomed, cuddled and loved her at her beginning with such great excitement at the promise of her life to come were with her all day today at her end, loving her more than ever. She fought it every step of the way and, having never lost a battle in her life, I think really thought she could win. Bless her stubborn little heart.

Tonight she has left home for the last time and it was very, very hard to let her go. She has no need of us now. Ours for her will go on and on. My darling Rose, it was a complete privilege to be your parents.

Rose will be buried in a private family ceremony - details of an open memorial service in the New Year to follow.

Thursday 2nd December

2010-12-02T16:58:00.011+04:00

Snow. Grrrrrr. We planned for this a week ago and it all sounded straightforward but in reality it doesn't work that way. Our palliative consultant - who I have never wanted to see more - attempts the journey on Tuesday and is towed ignominiously back to the Marsden ten minutes in. The community nurses so far have struggled out and we are managing the daily trip to collect iv drugs for the syringe driver but there are delayed deliveries at the pharmacy, a daily anxiety that the nurses won't make it and now, finally, civilisation breaks down completely and Ocado cancel our delivery. The police are briefed for the weekend to collect the community nurses and bring them to our door but it's the Marsden I really want. There was an airy promise of a police 4x4 escort but it hasn't materialised and Rose is abandoned to the care of us and the local nurses who are right on the edge of their comfort zone. There is radio contact and telephone instructions to steadily increase drugs to what the Marsden baldly describe to me over the phone as 'end of life doses' but Rose isn't listening and continues to eat her way through elephant portions of sedative and methadone while maintaining consciousness. Good grief, my lovely, do you want to be nine this badly?

I type this watching her little chest heave with the effort of her laboured breathing and listening to her continual background whimper which is all there is now, day and night, and I whisper to her in my head, give it up now my lovely Rose, this is no good. But I am still drowned out by the much louder and more persistent voice in my head saying please, please don't go Rose - I am so much more frightened of life without you than you can possibly be of dying.

Sunday 28th November

2010-11-28T18:24:00.012+04:00

Rose is suffering. There's no other way to describe it - high dose methadone through the driver has improved her pain and less morphine has made her more conscious but it's just a different kind of suffering. Conscious in the wretched state she's in is not what anyone would wish for and the daily rituals and humiliations of drivers being changed, enemas and sub-cut injections given, catheters emptied etc all raise her distress to stratospheric levels. She can't communicate beyond more than a few words so has resorted to a continual low grade moaning when awake. New lumps of tumour appear daily all over her, she has suppurating open sores where tumour has literally pushed its way through her skin - the relentless pac-man march of disease is an abomination, a vile atrocity on her beautiful body. OK, I say to her cancer, you've completely won this, please stop now. Enough.

How did it get to this? I don't know what I was expecting but it wasn't this. Should we have agreed to more chemo for pain relief, let the chemo kill her faster? Would it have done? She would have died on the 11th floor of UCH and not here at home but how many weeks and months shorter or longer would it have been, how much better or worse the quality of life - and for how many years are these questions going to go round and round and round in my head. I can't remember life before her suffering began now - none of us can. Today is the College Christmas fair, yesterday the Frost Fair at Rose's school - Felix goes to both and comes home with Christmas presents for his sister. I can't remember going to these fairs in a time when BCRT tins weren't shaken, when fundraising for bone cancer wasn't part of our lives, when Rose wasn't suffering.

I know I'm meant to feel grateful for every precious minute of these years, that I'm meant to look back and give thanks for the time we've had with Rose. Diagnosis, fracture, three months on a traction bed, nine more months in hospital, six months learning to walk again, endless physio, pain, check-ups, feeding tubes, more check-ups, daily battles at school of frustration, pain and exclusion, more check-ups, more pain, relapse, more tumours, more surgery, more pain, more check-ups, more physio, more relapse, much, much more pain and much, much more suffering. The pantomime of keeping one foot in the real world, endlessly playing at normal for friends and family, trying to raise Felix against a backdrop of will-she-live, won't-she-live, the strain, the agony of it all. I look back and I'm not grateful for a single second. The net result is the same - I'm losing my child and if then and not now how much less suffering would she, would we all, have endured. I'm just angry. In the seven stages of grief that I hear so much about I've crashed straight through shock and denial to anger. I think I might be here some time.

Tuesday 23rd November

2010-11-21T14:11:00.019+04:00

Where do you go to, my lovely
When you're alone in your bed
Tell me the thoughts that surround you
I want to look inside your head

The Marsden burn up more miles between Sutton and Dulwich and things change again. A little bit more control in a situation I have never been in control of slips away - Rose is put on a syringe driver which drips a cocktail of controlled drugs into her twenty-four hours a day. It means for the first time the community nurses have to come every day to change the driver. It's day two and already I hate it. It's an inconvenient time to have control issues. Now on general anaesthetic levels of ketamine as well as a startling selection of other drugs Rose is still heartbreakingly, horribly aware. Unable to move a muscle and barely able to croak out a few words but she can still cry and call out for us and one or other is continually attached to her hand, continually telling her how much we love her. But I can hardly meet her eyes now for the bewilderment and fear that lie there, for the shame of how completely and comprehensively it feels we have failed her.

Where do you go to, my lovely. Hopefully crabbing, swimming in the sea, driving Andrew's boat, throwing sticks for Ben, riding your bike. Anywhere but here really.

Friday 19th November

2010-11-17T19:56:00.013+04:00

I sit again in another long, long meeting with the Marsden palliative team. Things have changed again - no longer either asleep or awake Rose is now in some kind of awful hinterland and nothing or no one seems able to reach her or help her. We have almost exhausted our options and my confidence falters - methadone, ketamine, morphine, fentanyl and a variety of sedatives are all running into her dozens of times a day but still she cries out in distress day and night. I feel faintly and bizarrely apologetic that she is not conforming, not responding to the drugs in the way she is expected to, that she has a vice-like grip on staying in the here and now and experiencing every awful second of it, that she's not drifting away with the drugs, letting go, giving up. At the same time I am filled with renewed awe and respect for her - it's her life and every second of it is appalling now but she's still here, still hanging on to it. So completely Rose.

So we 'go up' on things yet again - doses are doubled and trebled, the local pharmacist runs between the GP and his phone collecting new prescriptions, ordering controlled drugs in eye-widening quantities. I am running a crack den but my eight year old is unsedatable. It takes a bottle of liquid sedative to calm her down sufficiently to catheterise her but they bring three and we joke that if it doesn't work we will share out the bottles between ourselves while Rose, Little Britain style, gets out of bed and walks to the loo. There is a black humour in it all because I literally cannot cry all the time but there is also an unspoken 'what next' and I am aware that if I can't manage this on all the drugs I have the only other option may be a level of deep sedation as in days gone by when symptom control was not so sophisticated. Not that it feels very sophisticated just now. And with that rises the spectre of the hospice so I don't bring it up. Instead they talk again about support groups, about Felix, about Simon, about how we are all coping and managing and are we getting plenty of help etc etc. And I want to say, I've got the rest of my life to worry about how we're all coping and it won't be well but for now shall we just concentrate on getting her pain under control?

I know that I am obsessed with keeping Rose at home but her current levels of awareness and anxiety only compound this. As her needs become more personal I can't bear the thought of her being touched, nursed by anyone other than us - an earlier, bungled attempt at catheterising her this week which left Rose screaming and traumatised and me with my head spinning with rage reinforces this. She's staying here and with intervention from as few people as possible for as long as this takes. So at the end of another difficult week - how much more difficult, how many more weeks? - Simon decides to start working from home. I don't put up much of a fight. In fact I shred his suits and cut up his Oyster card before he changes his mind.

Thursday 11th November

2010-11-11T13:18:00.012+04:00

It's all or nothing here. Rose is still either asleep or in pain but the pendulum swings further in each direction now - the sleep is longer and deeper, the pain when she wakes more unbearable to watch. New drugs are brought into play, old ones that are no longer up to the job are taken out, fresh hopes raised for the holy grail of pain-free, or as close to it as we can get.

It leaves long periods when she lies there sleeping or zoning out, in varying levels of consciousness, when I am at a loss for what to do for her. I long to scrub her - to wash her hair, her body, to take off her flaky nail varnish, the wristband she still clings to from a disco in August when she was last a normal little girl, to dress her in clean pyjamas and dry her hair but she is like a wild animal in pain and won't be touched. Surreptitious attempts to clean under the filthiest fingernails I've ever seen rouse her immediately and wet sponges are smacked angrily away. So I give up on that.

I take ridiculous amounts of photographs of her which I then delete because they are all the same. And anyway they are not Rose and they are not how I want to remember her. So I give up on that too. I could do some Christmas shopping online. And as soon as I have the idea I shy away immediately from the torture of it. I know it's relentlessly drawing nearer - what is to become an annual hurdle is only weeks away but if I ignore it perhaps it will just go away. Where do all the bereaved parents of small children go at Christmas I wonder - good grief perhaps there's a festive support group at Demelza House - or will we still be here pulling crackers over her bed. And how many of my children am I buying presents for. It's all intolerable so I give up on that too.

So what I do instead is I tell her the story of her. Perhaps she can hear me, perhaps I'm talking to myself but I tell her how much we wanted and planned for her, how excited we were, how badly Felix, Daddy and I all wanted a baby girl, a baby sister. I tell her about her birth - she's heard it all before but I tell her really slowly and say all the best bits twice. I go on and on and tell her all the funny anecdotes she loves, about all the holidays we've had, about nursery and starting school, about learning to swim, to ride her bike, about getting Harvey as a puppy, about the Isle of Wight. Mostly I tell her over and over how fiercely we love her, how desperately and pathetically sorry we are for every minute of the last three years, how insanely proud we are of her. God poor child. Not only is she dying and in terrible pain but she's got me banging on and on over her bedside and she can't even get away. At least she hasn't got to read this drivel.

Thursday 4th November

2010-11-04T16:19:00.012+04:00

A week is a long time in terminal illness. It has changed again and the things I wrote only last week I look back on now and it feels like months ago - there's not been much Dr Who or Sarah Jane or Charlie and Lola or sharing anything much with Rose. There's a continual background loop of Disney Channel and I am getting worryingly engaged in whether Hannah Montana makes up with her boyfriend or whether the Wizards of Waverly Place destroy the cafe while their parents are away but no one else in the room cares. Rose is pretty much asleep. The word looks wrong - all the usual connotations don't apply any more. Her sleep is not restorative, it's not recharging her, she will never again wake up, stretch and jump out of bed but it is at least an escape from her conscious alternative which is increasingly pain and distress filled.

Following two days of unconsciousness at the end of last week in which we descended into siege mode and braced ourselves for 'IT' Rose has rallied but with renewed levels of pain and discomfort and with new disease spread that is now challenging even the cool-headed Marsden team. Challenging but of course not defeating. Again they come armed with more and different drugs in the war on Rose's symptoms. New plans, new ideas. I've reached a stage where the rest of the world could fall off a cliff and I wouldn't even notice as long as I still have them. The hospice word is dropped casually into the conversation and I understand now that it's for me not her. But I'm not done yet. I spend the days juggling tablets, liquids, syringes to find somewhere on that fine line between unconscious and pain-free and I realise that it will not be as easy for her as it had seemed it might be last weekend. Rose is eight, she is young and strong and programmed to live for another seventy years. She is metabolising drugs at dosages that would kill me in a heartbeat and still they are not enough. If she was as old, tired and worn out as I am it would be so much easier for her. At this rate Rose's cancer is going to get me before it gets her.

Tuesday 26th October

2010-10-26T15:13:00.015+04:00

I may not believe in God or science or medical progress or in very much at all just now but I believe in the NHS. And I haven't always said that in the last few years. More specifically I believe in the palliative care team at the Marsden. As day follows relentless day and Rose's symptoms multiply I am skilfully led by them further down a path which without them would be unthinkable. In person for the big stuff - more drugs for intolerable scenarios still to come, teaching, guidance, advice, support - and on the phone 24 hours a day for emergencies. Familiar faces, familiar voices, calm solutions. Nothing and no one can help me now or change what's happening, what's still to come for Rose, what's to come later for all of us and even they can't do what they would surely love to do and wave it all away but what they can do is walk side by side with me through it all and every day find ways to make her suffering less.

Increasing pain, increasing nausea, increasing disease - daily changes almost imperceptible to us are slowly eroding Rose. There is more time spent asleep and less energy to enjoy the time awake - the effort involved in setting up a game or playing with her toys leads to tears of frustration as crushing fatigue, nausea or pain stops her in her tracks. Our afternoon routine of lighting the fire, making hot chocolate and watching Dr Who ends more frequently with me realising I am watching alone, closing the laptop and tiptoeing away. Used to filling the room with her personality she still rallies for friends and family - and nothing is guaranteed to revive her more than Felix, her very own Charlie. Charlie and Lola. Lola and Charlie. Felix and Rose. Rose and Felix. Charlie without Lola. Unthinkable.

But still my desperation and selfishness is such that I would settle for this. A Rose who can only totter a few steps, is in pain most of the time, feels sick and ill all the time, has disease in every limb, in her chest and in her brain is still a Rose to me, to Simon, to Felix. While there is life and breath in her I am staving off the devastation to come and so, a non-believer, a pessimist and a cynic, I pray every day for more days and weeks like these to come.

Sunday 17th October - for my father

2010-10-17T20:30:00.010+04:00

My father died on Wednesday night. He was very old, very ill and it was a long time since he had been 'my dad'. But because grief is not rational or logical that doesn't seem to make much difference to how it feels. However prolonged the illness and inevitable the outcome (no one ran through the door at the eleventh hour with a cure for Alzheimers) the ending is always a shock, always sudden, always somehow unexpected - and certainly unexpected RIGHT NOW DAD...

And so I find myself twelve hours after he dies in an undertakers in Exeter with my mother and my sister having a slightly surreal experience. The very patient man in the black suit answers all my mother's questions and I am surprised by all of them. Does the rest of the world not have a Masters in terminal illness, dying, death, funeral procedures and planning? We choose a coffin, hymns, readings, music my father loved and after what feels like hours it is organised. A long life all wrapped up. We go to see him in the chapel there and he looks fabulously handsome and peaceful and just like my dad has always looked. It is my dress rehearsal - I can look death in the eye and not be frightened by it.

So anyway. My father. He was a dying breed which, used to describe anyone else, is a crashing cliche and used to describe my father is right on the money. He was a true gentleman educated in the most traditional of British establishments and working and raising his family in a similarly traditional way. He was the most unassuming man I have ever met and would be mortified to be the centre of attention in this way and for his death to have coincided so horribly with Rose's deterioration. Always busy and happy he loved life, cricket, his garden, his children and his grandchildren. But he saved most of his love for my mother with whom he shared an old fashioned love story for over fifty years. These are some of the memories and catchphrases from my childhood that have played out in my mind over the last few days which will always sum up my father for me.

'I can see blue sky' Usually in the pouring rain in Devon in August. The term 'blue sky thinking' was surely coined with my father in mind - the kind of eternal optimism totally foreign to me. And potentially incredibly annoying...

'Goodnight, god bless, sleep well, see you in the morning, I love you' - night after night for about a million years as he put me to bed.

'Shall I light the bonfire before lunch?' A man of routine.

'Oh yes, so-and-so, they were an old client of mine...' Literally every company you ever mentioned. Bizarre.

More recent memories of him with my children - bowling patiently to a two-foot high Felix hour after hour, teaching him to play chess, building farms and dolls houses out of cardboard boxes for them both and so on. Top memories, top man.

I have no faith. But how comforting it would be if I did to imagine that my dad has gone on ahead for Rose to wherever they are both going to set up home and get the old place ready for her. In that mental picture he is of course condemned to an eternity of having his nails painted and watching Charlie and Lola and Dr Who with her but with what great gusto he would rise to the occasion.

Friday 8th October

2010-10-08T12:46:00.021+04:00

When a girl can't get to the salon the salon must come to her - Rose has been cut and styled, curled and blow-dried, manicured and pedicured and thoroughly pampered this week. Kicking all other well-wishers bearing flowers, food and presents into touch for Rose (not for me - please don't stop) Urban Retreats at Harrods sent us two fabulous members of staff with very busy diaries for a morning of fun. Rose enjoyed it a lot despite being in pain, feeling sick and having a headache. It was a shadow of the experience she would have had of old but it was a great morning and in her new sparkly jeans (never too ill for new clothes) she is looking gorgeous...

It was a very welcome distraction and took the heat off for me for a couple of hours to provide entertainment and pour oil on the million and one troubles that Rose has. She is very challenging now. And I choose that word carefully. Other options that spring to mind include difficult, demanding, mind-splittingly irrational, hideously rude, angry ALL THE TIME and so on and so on. She is more entitled than I can say in words to be all of these things - nothing is right any more because literally nothing is right any more. I am working harder than I have ever worked on my patience, on keeping my tone even and on smoothing over every difficulty but we lurch from upset to upset and by the end of most days I want to either weep, run away or hit her over the head with a mallet.

Refusing visits from her friends leaves her locked in an intense relationship with me but she is too confused/unwell/angry/disorientated to want reminders of the life that she is losing traipsing through the door to look at her. Suggestions of short, local trips for a hot chocolate or to drive to the park are met with resistance, the sudden onset of terrible pain, or a headache and postponed again. I have let her call the shots but she is only eight and a sea change is called for. We need a change of scene, new wallpaper to look at and Rose surely needs a break from a room full of adult visitors all day long - if that doesn't work either then we still have nail art, Sarah Jane Adventures and each other to fall back on. So with that in mind we are going tomorrow to see what Demelza House has to offer us. God help us when a Saturday afternoon family outing to a hospice feels like a lifeline.

Wednesday 29th September

2010-09-29T11:40:00.016+04:00

It's busy here - a revolving door of friends and family (good), an endlessly ringing telephone (less good) and an astonishing amount of healthcare professionals on the doorstep (a lot less good). The support is overwhelming and I am grateful and humbled by it - the sad irony of how different it was during Rose's original treatment and how desperately we needed the sort of back-up I have now is not lost on me. I have lists of mobile phone numbers, emergency contact numbers, emergency procedures and familiar voices on the telephone every day - I would have gnawed off my own arm for that two and a half years ago.

Palliative paediatric care is faultless in its thoroughness but right now all it boils down to is exhaustively and exhaustingly updating an endless round of people on the day's symptoms and how I'm managing them. And I'm managing them just fine - Rose is transformed from the little girl who slept or screamed her way through three weeks in Kings. She is up and dressed most days, plays for short periods of time, is enjoying stories and DVDs, back-to-back episodes of Charlie & Lola, re-runs of Anne of Green Gables, being with the boys and her dogs, being at home, being with me. Radiotherapy and pain management has brought her back to us when I thought she would be for ever more in a morphine coma and I need to guard this time with her more closely - the second I am out of my depth they will all be the first to know.

I try to pick my way through the visits from hospices and see what help they may be to us. I'm not convinced just now but maybe later on when things change again and I have desensitised myself to the word hospice it will be different. A woman from Shooting Stars visits - she is a qualified nurse and would administer drugs. My ears prick up. We are eligible for her to come fortnightly for two hours so I can leave the house but Rose stiffens beside me and whispers 'but why do you need to leave the house, mummy?' I realise that I really, really don't need to or even especially want to. Demelza House come out - back in the day when my life was safe I have blithely fundraised to build this hospice. Let's hope they did a good job. They tell me that Rose's case has been to panel and she has passed the assessment. Good grief, I wonder, under what criteria may she have failed? They talk about respite care, daycare, the whole family going for the weekend, the new minibus, the trips to the circus, the sensory room, the water beds and how utterly fabulous the place is. Then they start to talk about end of life care and the familiar feeling that I get of reading a script in a rather black play descends on me. I know it's just psychological survival but it dawns on me how far off taking all this very seriously I still am.

Friday 18th September

2010-09-17T17:44:00.003+04:00

Rose has been back at home for three days and three nights and we are all still in one piece. An ambulance, a Macmillan nurse, seven bags of equipment and drugs and she was finally stretchered in style back to her new living quarters in the playroom on Tuesday afternoon. Where once there was a playroom now there is a fairy grotto and all her worries about not going back to her bedroom evaporated when she saw what we've done with the old place - it is a room fit for a princess. Let her reign begin.

Monday 13th September

2010-09-13T23:50:00.009+04:00

Countdown. Another day of meetings - meetings with social workers, clinical nurses, pain consultants, calls to the Marsden and back again and we are inching slowly nearer Alleyn Road. The pharmacist has spent the afternoon trawling through the three page drug chart that is going to become my bible and ordering and ordering and ordering. Scenarios are talked through and prepared for, future symptom control outlined and planned and the combined time, effort and professionalism invested in us by a cast of thousands is humbling.

We spent our year of chemo at UCH and the Marsden dreading every infection that catapulted us into Kings - now I'm not sure I ever want to leave. We are so safe here - safe from coping with the fear and pain of Rose's disease alone, safe from the outside world, safe from me giving the wrong dose of the wrong class A drug... I will be so embarrassed if they go to all this trouble for us and I am back within a day because I am completely out of my depth.

Things that are good about leaving hospital:

We will all be together
The food is better at home - occasionally
No night nurses asking me if Rose would like pain relief when we are both asleep
Alcohol is much more readily available

Things that are not good about leaving hospital:

None of the doctors or nurses appear to be coming with me

Friday 10th September

2010-09-10T10:52:00.018+04:00

Groundhog days. We're still at Kings.

Radiotherapy was done on Monday on another ambulance road trip to the Marsden and she was very brave. A whole day of planning scans followed by a high-dose blast, a cast of thousands interviewing her continually about her pain and endless moving her from one trolley to another was all too much but with matching headaches and matching relief we made it back to Kings that night.

Three days of post-radiotherapy swelling and increased pain were anticipated (oh yay) and along it came. I now know more about nerve pain and the difficulties of treating it than I ever imagined needing to know - my pain management learning curve has been steep and I can now even pronounce most of the drugs that Rose is taking. Which is lucky because in a few days the plan is that I will be standing in my kitchen surrounded by them.

Pain and home have been the topics of the week and the subject of many, many meetings. As I free fall further into the black hole of terminal childhood cancer I realise how many people are/will be involved and it's as overwhelming as it is reassuring. Going home is not as simple or exciting as it sounds and for the majority of the day I look at Rose and wonder how on earth it will work. But Rose isn't actually ill yet - she is heavily drugged to ease her pain but when the pain is controlled and she has slept off the worst of the sedation there are periods when she is still the funny fabulous Rose of old. There is also a new Rose who is angry and frightened and bewildered and I look at her when she is hurling abuse at me and screaming out her frustration and I realise how far behind the curve she is. And that's exactly where I'm planning on keeping her. A new lump appears on her knee and she whispers, terrified, to me 'what if it is something?' 'You've just got tricky bones, Rose,' says a passing doctor with just the right air of casual and she is reassured. There is no right or wrong way. I am told that parents have regretted either too much disclosure or not enough and that only we can decide what is right for Rose - if I'm doing this wrong for you my Rose I am so sorry. I literally have no idea what I'm doing.

There have been lighter moments - 'would she like her enema before or after her Macdonalds?' - and darker moments - 'how long, how long, how long?' - and still far too many moments in pain. But right now she is asleep and not in pain and she has got me and Snuffles within two foot of her and she is ok.

Saturday 4th September

2010-09-04T11:45:00.009+04:00

Simon and I sit in a meeting with the Kings palliative care team, the Marsden outreach pain management team, community nurses, and our CNS at Kings and talk about the future. No one mentions the year 4 syllabus, state versus independent, whether or not she should have extra spelling lessons this term, which clubs to do and what options we were considering for secondary. She doesn't have that future any more. Instead they talk about a home visit to assess the house and decide which room to put Rose in. HER ROOM I scream in my head. They talk about hospital beds, commodes, slides to get her in and out of wheelchairs, locked medical 'toolboxes' which the community nurses will have codes to, the legal requirement that Rose is seen fortnightly by a doctor because we will have controlled drugs in the house in order to avoid a post mortem, the fact that Rose's details will be on the 999 system at all times and on and on. Oh my lovely girl, I think, I know you love the limelight but this time I really think you've overdone it.

I drift in and out of the conversation but it goes on - we are handed leaflets with phone numbers on, emergency pain team contacts, hospice newsletters with smiling dying children on the cover, a brochure called When Your Child's Cancer Cannot be Cured (which at no point surprisingly suggests putting a pillow over their face and handing yourself in at the local police station) and finally it draws to a close.

We get it. Rose is going to die.

Friday 3rd September

2010-09-03T23:46:00.005+04:00

It has been a very, very difficult week.

There have been endless phone calls, ward rounds, decisions made, unmade, remade and contradicted by a myriad of doctors and days lost to indecision and chaos and in the midst of all this confusion one little girl lying in an increasing stupor of drugs to mitigate her terrible pain. The detail of the scans she could have or should have had or has had this week are too many to go into - but it has been a frightening and bewildering week for all of us. Last night finally some progress on hunting down what is going on - her bone disease has spread and as thought to be the case a tumour in her pelvis is wrapped around a nerve root and causing her excruciating pain. She also has disease in her hip and her knee. She's in a right old state in short.

So now we have some results we can make a plan and hopefully stick to it. Whole armouries of drugs are now in play - morphine two-hourly, fentanyl patches, fentanyl lozenges, nerve blockers, steroids, anti-inflammatories as well as a secondary armoury of drugs to combat the side effects of all the other drugs. Rose has been conscious less and less in the last couple of days which is appalling but so much less appalling than Rose awake and screaming and begging and pleading for someone to do something about the pain. Now that there is something to irradiate we are going on another ambulance road trip to the Marsden on Monday for just that. Number one plan is to get that done and then get everything possible done to get this baby home.

Tuesday 31st August

2010-08-31T18:36:00.006+04:00

Time stands still during hospital bank holiday weekends. Doctors that are so young you have to stop yourself from asking what they want to be when they grow up sit at the nurses' station trying not to make eye contact with anyone and even worse than that Costa Coffee on the ground floor shuts at 3. We are still in Kings. Memories of our island summer are fading fast - this time last week we were still looking at the lights on the water but it was our last night all together. Now we have slipped like automotans back into hospital behaviour - changing shifts and hats and juggling Rose and Felix between us. Almost like we've done it before.

We lose three working/scanning days with the bank holiday and nothing happens except higher and higher doses of morphine, three enemas, drips and lines and lots and lots of sick bowls. Just a regular family August bank holiday then.

But today it's business as usual on the ward - the admissions flood in and proper doctors who are the age of my friends and not my children are back at work. The hotlines between Kings, the Marsden and Stanmore start up again in an attempt to make a plan.

My plan - we have an MRI today at Kings to hunt down whatever is pressing on whatever and causing the pain so that the Marsden can radiate the bastard to kingdom come, we can ease off on the crazy levels of opiates that Rose is taking, she emerges from her morphine coma and comes home. Today.

Kings' plan - similar but maybe not today.

Stanmore decision - no MRI. Too much metal in her prosthetic leg for the magnet.

Back to the drawing board and another day lost. Running out of days. The new elephant in the corner - so many elephants, not enough corners - is that Simon goes back to work on Monday.

Friday 27th August

2010-08-28T21:59:00.003+04:00

It wasn't quite the departure from the island that I had in mind - before we could run out of summer we ran out of Rose. We didn't get to take the last photo of the children on the tree trunk on the beach or go blackberrying. One more night of out of control writhing pain and we were admitted first to St Marys on the island for them to stabilise the pain - unsuccessfully - and then blue lighted back to London. In none of my mental pictures of how the summer would end and the sadness with which I would pack up Rose's belongings did I imagine her strapped down in the back of the Isle of Wight ambulance service while we threw eight weeks of debris into the back of the car. No time at least to think too hard about leaving.

More ambulances today to the Marsden from Kings and back to Kings tonight - more scans to hunt down the cancer in her body but unsuccessful so far. Nerve blocks and more morphine patches and Rose finally gets a night's sleep.

In two days Rose has seen three ambulance teams, three different community escort nurses, an oncologist, a radiotherapist, three radiographers, several registrars, about 20 nurses, the pain team and of course the clowns. No wonder there are shortages in the NHS - they have spent all their money on Rose.

Tuesday 24th August

2010-08-24T15:46:00.003+04:00

So each fresh hell makes the one before look like cancer for beginners.

Just as the radiotherapy starts to show some improvement in Rose's arm pain from nowhere comes leg pain that makes all her other pain so far look like a twinge. In her good leg comes pain from the hip to the shin which leaves her screaming, sweating, crying and begging us for help. It is the most mind-splitting agony we have ever been in to watch her and hold her and stroke her and be able to do nothing - nothing at all - except double and then triple the morphine doses. We have to close the windows and doors in the house because her screaming is so loud. When each attack subsides or the morphine finally takes the edge off it Simon and I are left shaking - and frantically creating a diversion for Felix to get him out of the house and away from her.

The Marsden speak to the community team on the island and an angel in uniform immediately drives out to the house and sticks painkilling patches all over her. We can give morphine on top and there is no upper limit. And do you know what the sick sick sick irony of this is - it's not even the bone pain that's going to kill her. Her chest tumours are still totally non-symptomatic - not a wheeze, not a cough - yet that is what will slowly occlude her lungs and end this hell. If it hadn't come back in her bones she would still be out on a sailing boat, riding her bike round the island and running on the beach and her prognosis would be just the same. In Disney movies no one dies of osteosarcoma - they fade away gently while having long intense conversations with loved ones not in a sweaty, hair-tangled mess of vomit and morphine.

Bad day.

Wednesday 18th August

2010-08-19T18:23:00.006+04:00

Radiotherapy is over and we have been back on the island for a couple of days - all together now with no more interrruptions, hospitals, alternative holidays or cricket...no sunshine but who cares. Felix is sailing and Rose and I are buying up the island's Sylvanian Family population and new dvds. Today she is grotty - there seems to be an ever decreasing line between being in pain and therefore miserable or dosed up on morphine and therefore miserable. Still windows when the pain gives her a break and we can go and do something fun - but it's more about creating fun for Felix. This morning I dropped Felix and Simon off to play golf while simultaenously handing Rose sick bowls in the car - morphine, empty stomach, no appetite, vicious circle etc etc.

But later we take a stroll to the beach with the dog to watch Felix sailing in the harbour, collect shells and look at the lifeboat and I am so grateful that we have this beachy hideout this year of all years. I have more plans and things I still want to do with her here than I have days left - I am going to run out of summer soon. But there are still blackberries to be picked on the Downs, marshmallows to be toasted on beach bonfires and lots more pottery to be painted. Living in the moment and grateful for every minute of it.

Friday 13th August

2010-08-18T20:07:00.004+04:00

We've done three treatments - it's all more life experience for all of us that we'd rather not have but there it is. It's ok - the team are lovely with Rose, the treatment is fast and should be painless but she has to be positioned each day in the exact same spot and her arm is so sore that even with all the morphine in the world at our disposal she cries as she is moved about and measured. And it's a first for me - I can't be with her. There's not been a scanner so far that I haven't been in wearing a variety of fetching lead aprons but this is apparently a definite no-no. I just get a one-way microphone to her and she feels miles away and looks like the most vulnerable little scrap lying on her table clutching Snuffles. She is.

There isn't a single other child there and a single other patient under the age of about 50. Despite endless cheerfulness with Rose and the staff I feel I am about to drown in my own bile and rage.

Wednesday 11th August

2010-08-18T20:04:00.003+04:00

Admitting defeat on our gung-ho 'we'll do it from the island' approach to radiotherapy. Rose is desperate not to leave for London but realistically a six hour return journey for ten minutes on the table is going to kill us all. We're going home.

Monday 9th August

2010-08-18T20:00:00.003+04:00

I've got my boy back! His health and vitality and sun tan is life-affirming and an evening with him is probably as restorative as his week in Corfu - which is just as well as he is off again in the morning to have more fun with more friends. Cycling and kayaking in the New Forest way better option than watching his sister being lined up on a radiotherapy scanner every day for a week.

Wednesday 4th August

2010-08-18T19:51:00.003+04:00

We leave the island early and belt back up the A3 to the Marsden to meet the latest walk-on extra in our lives - Frank Sarran their radiotherapy consultant. Lifetimes ago we had a short meeting with him to discuss the merits of radiotherapy post-operatively in Rose's leg - when we said goodbye that day as he shook our hands he said 'lets hope we never meet again - things will not be going well if we do'. Funny how these lines stick in your head.

He's delightful as they all are and extremely tactful and sensitive in Rose's presence - she is bored within minutes and goes to find the clowns and he can get down to business. Five treatments over five days, no promises but might bring some pain relief. And can we start tomorrow. Aaagghh we have left the dog on the island, the house unlocked and the neighbour doing a quick beach walk with him. We don't even have a toothbrush with us and are booked on the 5 o'clock ferry back to the Isle of Wight. Resist the urge to point out that a phone call to tell us they had started booking the sessions already would have been helpful and realise that we are so much more in control than we used to be. We say we will come for the pre-treatment scan in the morning and stay in London but that treatment will have to wait till next week. Which of course is fine. An hour later we are bizarrely back in Dulwich just waiting to get the hell out of here again.

Sunday 1st August

2010-08-18T19:46:00.004+04:00

Andrew has cruised into Bembridge Harbour in his gorgeous boat and taken Felix to Corfu - we are so happy he is going and so appreciative of the fact they haven't had a summer holiday without Felix for three years but it's SO painful that they are all going and we are not. How ridiculous is that - with all the significance of what is happening for us what's a holiday but we are so flat and sad when we get back from saying goodbye that we bundle Rose into the car and drive up onto the Downs for a gentle walk and a lovely pub supper with the dog.

Radiotherapy appointments start this week on the mainland and Felix is so completely in the best place. Heat and luxury terribly overrated.

Monday 26th July

2010-08-18T17:24:00.006+04:00

The boys are back in London for the week for a cricket festival and Rose and I are taking it very easy on the island. Picnics on the beach with family staying nearby and lots of gentle playing with friends at the house - the pain and frustration for her of not being able to sail, cycle, trampoline and run around on the beach is mitigated by trolleys full of landfill from Tesco. We will need a trailer to get the dvds, toys and books back to London at the end of the summer - arts and crafts, baking and listening cds are the new thing and every mother in the neighbourhood is buying into it. It's still ok more than it's not and most of the time I'm in my depth - pain relief has stepped up but I'm still not sure she's ever free of it. Behind closed doors the bewilderment and fear is too much for her more often, her moods are understandably testing and there are no boundaries any more - I don't make her brush her teeth if she can't be bothered, there are no bedtimes, no mealtimes, no time away from each other and it makes the last two and a half years look like a walk in the park. I am exhausted and yet this is just the beginning of the next phase, the new normal.

When distracted from pain and immersed in something fun Rose is the same Rose she has always been. This shouldn't happen to anyone let alone any child but if ever there was a child that was going to grab life by the scruff of the neck and snog it senseless it's this one. In pain and on morphine Rose is still more fun than just about anyone else I know. Spectators on the sidelines of our life remark continually on how well she is doing and how much she is still getting out of every day but we are left with the fallout from pent-up pain and anger when the fun comes to an end or the morphine wears off.

Anyway today they won their cricket on the mainland and here on the island I drank lots of wine with a lovely neighbour watching the lights on the water and the sailing boats and all is well.

Saturday 17th July

2010-07-28T01:04:00.006+04:00

A sunny and rainy friend and fun filled week on the Isle of Wight - fabulous and awful all at the same time like every moment with her now. But we were all together in her little island house where we have so many wonderful memories of both our amazing children. In a last-minute panic that this simply cannot be her last week here we've moved all our tenants for the summer into other helpful houses so that Rose can come and go from the beach for as long as she can or wants to. Corfu might be off but with a bit of hospital support and lots of painkillers there's nothing stopping her from a few more weeks of seaside life. Links are set up with St Mary's in Newport and the local GP, prescriptions faxed about from the mainland and we are coming back in a few days for as long as we can.

Friday 9th July

2010-07-28T00:50:00.004+04:00

8am we meet Tim Briggs and our Stanmore nurse Chris Henry at the hospital in Bolsover Street where so many leg scans have taken place. They are calm and supportive and respectful of our wishes. For the first time we talk about Rose's quality of life and take a realistic look at her chances -finally after more than an hour all talk of surgical heroics and last-chance chemo is shelved. Rose is going to live for as long as she can with all the palliative support available but no-one is fooling anyone any more with talk of cure or miracles. I feel closer to them both than to just about anyone in the world apart from Simon during that meeting. What a journey we have all been on in the last two and a half years and we are acutely aware we are but one of their patients. What a hideous job. Briggs is more frank than he has ever been with us - describes her original tumour as massive and the fact that it didn't come back in her leg as staggering. He is an amazing man - and a father through and through. He will always be to us the hero that saved her life and her leg and gave us precious time with Rose. He told Rose years ago that they were going to grow old together which she has never forgotten and the fact that they're not is no one's fault. The chemo failed, the cancer is aggressive and so much more research and funding is needed into this bastard of a disease.

We leave at ten absolutely exhausted and drive like lunatics to get to Crystal Palace park where Rose is performing the Big Dance with her whole school. We don't know whether this is her last morning at school ever.

Monday 5th July 2010

2010-07-28T00:35:00.005+04:00

Results from more scans, CT and bone but it's all just blah blah blah. Maria has rallied and is in the mood for heroics - she wants more chemo, the whole nine yards - the original protocol from A-Z all over again, a humeral prosthesis, nine months of treatment and six more cycles of chemo. We are askance. She's just doing her job but she misjudges it badly and she is nowhere near where we are. The meeting goes badly and we part with no course of action decided on. Rose is at school on a trip to the park and I am meant to be with her not planning her slow motion car crash. That night Maria gets Tim Briggs to call me and have another attempt at pushing chemo. We agree to meet later in the week to talk it through again without Rose.

It is both children's last week at school before the summer break that they are both so excited about. They both think we are cramming eight weeks with fun and trips - the Isle of Wight, Corfu with the cousins and we go through all the motions of Founders Day, cricket matches, induction afternoons with new teachers that one of them will never be taught by, packing up and proudly bringing home their year's work. Rose's school pulls off a new low by requesting that the children fill a memory box to be opened on the last day of next year with photos, letters to themselves and precious things. Jesus. You literally couldn't make this up.

Friday 25th June

2010-06-30T14:40:00.008+04:00

Rose has a bone scan booked at Kings - we tell her it's just to check out the sore shoulder and that she can go to Felix's sports day while the radioactive medicine does its stuff between scans. She takes it all so in her stride - she cannot remember now life before anaesthetising cream, canulas in her veins, endless different radiographers facilitating endless different scans. She is eight and so they start to tell her exactly what is going to happen - it's ok she says. I know.

The bone scan holds no fears but she is in pain and I can't bear it. I bleep her consultant and get her written up for stronger drugs but down in the hospital pharmacy they make a mistake and give codeine in tablet form not liquid. It's no one's fault but I shout at the poor pharmacist and Rose is a bit surprised.

We go to Dulwich College where 200 lovely 12 year old boys are running around and jumping over things on a very hot day - they all look so well and healthy and fabulous and they've all got all their lives in front of them. We look out for our very own fabulous 12 year old and I have to forcibly stop myself from throwing myself on top of him for a hug. A couple of people know Rose is coming and going from the hospital but I don't want to talk about it. I just want to be with my friends for an hour watching my son like every other mother there. If I stay there on my corner of an English playing field on a beautiful June day perhaps it will all just go away.

Wednesday 23rd June

2010-06-30T14:24:00.010+04:00

The year breaks down for us all into a lot of memorable dates and along with the old favourites like Christmas and our birthdays and the day the dog ate the hamster there are several significant dates for Simon and I and Felix and Rose - anniversaries we will never be able to walk away from. 21st March when we walked into Kings and came out two hours later completely different people with a daughter with cancer, 7th April when to the sound of her endless screaming she shattered her cancerous leg, 6th November eighteen months later when metastatic lung tumours were found and we knew we hadn't made it into the lucky 50 per cent, and now today 23rd June when finally the game is up. The radiographer at Kings was wrong. Rose's incurable cancer is back in her shoulder and also in her lungs.

There really isn't an awful lot to say - Maria says sorry several times and I tell her it's ok. I don't think she's sure if I've had a lobotomy or am just really well brought up.

Thursday 17th June

2010-06-30T14:18:00.004+04:00

Simon and I have a day of synchronised anxiety and realise independently that we need to do something about the shoulder pain today. Simon phones Stanmore (for reassurance) and they tell him to take her straight to A&E at Kings for a plain film x-ray and to get it couriered up to Stanmore that night. Not that reassuring then.

We do it straightaway and the radiographer confidently reports that he can't see anything wrong with her shoulder or arm. Her consultant at Kings sees her immediately, gives her a full examination and says she's looking just fine. We are so relieved that I am almost cross with Rose for putting us through so much worry for nothing. It's just a sore shoulder.

Sunday 13th June

2010-06-30T14:17:00.002+04:00

Rose has shoulder pain. It won't go away with paracetomol and it is waking her up at night.

Wednesday 5th May

2010-06-30T14:09:00.006+04:00

The x-ray is clear. No recurrence. We look at one another - is there a chance that that will be the end of it? Ten per cent of metastatic osteosarcoma patients make it past the five year mark. Someone has to make up that ten per cent. It's going to be Rose.

In a sudden rush (rare) of optimism and conviction I decide that Rose is going to be ok. She's going to be nine and ten and eleven and twelve and then she's going to drive me mad because she's a teenager and we're going to argue and fight over clothes and boyfriends and staying out late and we're going to shop together for another thirty years and I can't wait for all of it.

Wednesday 28th April

2010-06-30T13:52:00.007+04:00

Back to UCLH. Back to Maria our oncologist of old for review now. Back to where it all began. It is strangely reassuring to see her and she is delightful with Rose. We've had the most intense encounters of our lives with this woman. She's never seen Rose upright as she had already broken her femur by the time we met and was in traction on chemo and morphine. Oh how we reminisce. She tells her that she is walking like a supermodel and Rose immediately recognises that here is someone who speaks her language.

The play specialist takes Rose off and teaches her how to knit in the newly gorgeous brand new outpatients clinic while we catch up with Maria and review the last two years since we last saw one another. It's all fine until she asks us to go and get a chest x-ray and then I want to throw up. I wasn't prepared for that and even worse she will write to us with the results. It's still only ten weeks since surgery - it must be fine.

We get it done quickly and take Rose out for lunch. The restaurant is full of people just on their lunch hour, getting on with their day, doing their thing. No one else has come from a paediatric cancer unit. I look around and wonder how many of them have eight year olds who are tearing around their school playgrounds in the spring sunshine. Lucky, lucky bastards.

Monday 9th April

2010-06-30T13:49:00.005+04:00

We've been on holiday! Rose has been back on a plane, in a pool, on a beach, in a restaurant by the sea with lots and lots of people who love her. It was fabulous. It was painful. Was it the last time?

Monday 15th March

2010-03-31T19:37:00.011+04:00

We decided to give school a wide berth until today when Rose was seeing Simon Jordan for her first post op check. Almost sure it was too soon (surely?) for anything sinister to have reappeared in her lungs we still both nearly died of fright waiting for the chest x-ray to be analysed. All is fine - Rose is 'fabulous', her chest is 'looking amazing' (professional modesty) and he sent her confidently back to school to get on with being eight. Now that he has told her she is fabulous and amazing her lungs aren't feeling swollen any more.

So we're just going to get on with our lives then.

Monday 8th March

2010-03-31T19:33:00.004+04:00

Psychological set back - Rose is fed up. Hardly surprising - she's got a bit of chest pain, her leg aches, she's short on one side now by 1cm and it's making her limp worse, small 8 year old girls are not the most sensitive or imaginative and cannot begin to go where she has been and she's thoroughly fed up with the whole world.

She rings me from school - via the school nurse - to tell me that her 'lungs are swollen'. Bless her little heart. It is about the most heartbreaking thing she's ever said to me and I break land speed records getting to her and putting her safely back on the sofa with the dog, popcorn and Disney channel. School can wait.

Monday 1st March

2010-03-31T19:28:00.004+04:00

Bored of all our DVDs and having already cost a fortune in pottery painting, cinema going, pizza lunches and torturing the dog we decided that check up or not Rose is going back to school. We'll start with half days and see how we get on.

Wednesday 17th February

2010-03-31T19:24:00.004+04:00

We're home!

Almost had to take her back last night as Rose totally panicked once alone with me, Simon and a suitcase full of painkillers. She watched us incompetently drawing up vials of medicine, chopping tablets and reading instruction leaflets convinced that she was in the hands of total amateurs (chance would be a fine thing) and wouldn't make it through the night. Delayed shock, fear and relief came out in a hideous three hour bout of total hysteria and just as we were about to admit defeat and put her back in the car to the Brompton she fell asleep - completely worn out. Tomorrow is another day.

Tuesday 16th February

2010-03-31T19:21:00.003+04:00

Simon Jordan comes to the ward on his rounds and Rose is jumping up and down on a mini trampoline in the middle of the room. Five days after open chest surgery.

'Does that hurt, Rose?'
'Nope'
'Would you like to go home?'

Hooray.

Saturday 13th February

2010-03-31T19:15:00.005+04:00

Oh god ward life how could I have forgotten so quickly? Low points so far:

The Nazi serving supper in the playroom tells Rose (who has tottered out of bed for the first time in three days) that we didn't order anything so she can't have anything. Cheers for that.

The baby next to us is having his breathing monitored overnight and his machine alarms every five minutes all night. Not his fault, not his mother's fault but OH MY GOD.

The mother on the end (I need a whole separate blog just for her but no time) shouts 'do you want a fucking slap?' at her two year old in the night because he needs a wee.

Only parents are allowed by the bed (no bloody room for anyone else) and Simon is busy somewhere with Felix and 100 of his friends distracting him from Rose.

Every delicious food outlet in London is within a five minute sprint and I can't get to any of them because Rose has me on a leash about as long as her epidural tube. I am eating canteen sandwiches for breakfast, lunch and supper.

Aaaggghhh.......I want to go home.

Thursday 11th February

2010-02-15T00:15:00.011+04:00

Take two.

Simon Jordan is fit and well and has just spent five hours operating on Rose. He has removed two tumours, found no others and she is in intensive care beginning her recovery.

I started the day sobbing uncontrollably over her anaesthetised body in theatre and am now elated and euphoric. Simon and I spent the morning drinking coffee endlessly and watching the hours tick by. Again. When the surgeon calls us from theatre to say it's all over and went well we have to remind ourselves that it's not really over at all. On our cramped ward a mother asks us casually what Rose is having done and we stare blankly at her. Everyone else is having an ingrowing toenail removed.

But it's over - almost four months from the beginning of this new hell and Rose's tumours are out, she is drifting in a morphine world cuddling Snuffles and we have a new surgical god.

Wednesday 3rd February

2010-02-15T00:06:00.008+04:00

Rose and I went into the Brompton yesterday for a pre-op day of scans, bloods, x-rays, consents and not much in the way of light relief in readiness for a 7am theatre list this morning. Initial impressions put the Brompton almost at the top of our extensive hospital critique - location (amazing, Kings Rd) nurses (good), accommodation (fab - single room), playroom (adequate, dvd supply good, games not good), queue for x-ray (non-existent - excellent), food (crap but McDonalds round the corner) etc etc. Simon Jordan (drum roll) even came to see us and promised her a post-op McDonalds bought personally when she was up to it. We eased ourselves into readiness and had an OK night.

Until - 7am visit from his registrar just as Rose is in her theatre gown with a drip in her arm to announce that Simon Jordan is ill and we can go home whenever we are ready. The tumours are coming home with us. It's no one's fault - but it's miserable. I take Rose home via the toy shop where we buy the Sylvanian hospital and spend the rest of the day performing successful thoracotomies on a variety of Sylvanian animals. Simon comes home and we drink a lot of wine and scream into our pillows.

Sunday 24th January

2010-02-14T23:59:00.006+04:00

Just two more birthdays to crawl through before we could talk to the children. Felix was 12 on Thursday and Simon was a little bit older the following day. The Oscar winning performances of normality and birthday cheer are getting a little tired now and we are not in great shape by the time we sit the children down and tell them in the lightest, brightest and most casual of terms that Rose has to have a bit more treatment. Despite the up beat delivery and complete omission of facts and implications both children are shocked and frightened and Rose cries for hours. So we promise her a hamster.

Friday 15th January

2010-02-14T23:43:00.004+04:00

Developments - finally.

Since the scan is now booked for a Friday we can't get out of seeing Kathy, Rose's oncologist, in her clinic much as we would love to. We have the scan first and Rose is then whisked off as always by clowns and play specialists to do something fabulous. If only the Marsden were run by the clowns. We wait and wait and wait to see Kathy. Finally we are in and can tell that Kathy herself can't decide entirely whether the news is good or bad - the tumours have doubled in size (bad) but there are no more as yet (good). Kathy gets hold of the thoracic surgeon there and then on his mobile and on the basis of her verbal report he decides yes, let's get the bastards out of my little girl's chest. Or a variation of that anyway.

With that decision made Kathy then goes on to drop a more unexpected bombshell. She is leaving the Marsden and moving to a more managerial role at Great Ormond Street. I am entirely wrong-footed - in the bad marriage of our relationship with Kathy I do not expect her to slip out of the back door like this just as things take a turn for the really quite appalling. Presumably it's back to UCLH although who knows how relevant follow-up appointments now are for us. Each knowing we won't ever have to do this again we have the most amiable and sensible chat we have had in nearly two years and wish each other well. Game, set and match to Kathy.

The more pressing issue is that Simon Jordan, our new great white hope, wants to meet Rose. The game with the children is up.

Wednesday 13th January

2010-02-14T23:38:00.004+04:00

I am going to get Say No To Snow T shirts printed - today is the day we have waited over three months for. The repeat CT of Rose's chest to assess tumour growth at the Marsden in Sutton. It has snowed hard all night and Dulwich is a white-out. I phone the Marsden - so far they have one radiographer in and the access road is closed. The bored receptionist in CT gives me an appointment for Friday.

Even the children are now fed up with the snow.

Saturday 9th January

2010-02-14T20:15:00.010+04:00

Rose's 8th (last?) birthday party. I have been dreading this. And it's STILL snowing. I have ordered a ridiculously expensive and completely amazing cake which Rose and I trudge off in the snow to collect on foot while Simon blows up balloons - the whole morning is a nightmare in slow motion and Simon and I can't even look at each other.

But actually of course the party is wonderful and fabulous and a ton of fun - the house is full of gorgeous little girls being pampered and belting out songs out of tune to a karaoke machine and they are all hilarious and full of LIFE. Rose is in birthday girl heaven and the whole living in the moment thing really works. What a great afternoon. I want it to never ever end.

Thursday 7th January

2010-02-14T20:11:00.004+04:00

Aaagghh bloody bloody snow. Can't get Rose to Bolsover St for her leg scan this afternoon no trains, roads a nightmare. Postponed until next week. Thoracic surgeon needs leg scan to confirm no metastases anywhere else before he operates, if he operates. Children back to school, real life back in very sharp focus.

Saturday January 2nd

2010-02-14T20:08:00.005+04:00

New year resolutions:

Live in the moment
Live in the moment
Live in the moment

Monday 28th December

2010-02-14T20:01:00.004+04:00

So snow sucks. My god the country has come to a standstill with not a patch of the UK not currently under blankets of the stuff - and it appears we are not a nation of wannabe Inuits. Taking Rose to a birthday party less than five miles from home last week I had to abandon the car - and that's in London. More forecast - children in heaven.

Christmas was wonderful and endlessly precious. Still living in a bubble and dreading the new year.

Tuesday 22nd December

2009-12-22T23:48:00.009+04:00

What to say - so many days of denial but a gradual processing of the shock and grateful most of the time for the privacy of it all. We've met Simon Jordan - thoracic surgeon and latest caped crusader in our lives. I fear mainly for the renewed hope he put in our hearts as I know there is a world of difference between what he would like to do for Rose and what he really can. He makes it all sound very simple and very possible. There is talk of osteosarcoma 'burning itself out' (I love this phrase) and Rose recovering quickly from open chest surgery. The decision to operate or not is his and will depend on the results of the next CT scan in January to see whether the lung tumours have grown in size or number or both. But we could ask him all the questions we couldn't ask in front of Rose and went through the details of the operation. Simon Jordan takes his place in my hall of fame next to Tim Briggs - I am in love with them both.

Heads down for Christmas now - the house is full of food, champagne and presents. There is so much booked and arranged to keep us all busy and distracted for the next few days and the children are so excited. It's even snowing!

Friday 11th December

2009-12-11T14:44:00.011+04:00

Feeling very isolated with the loneliness of what is happening to us and the secrecy of it - if the children were smaller, or perhaps older, we would not have to protect them from the bush telegraph like this. But I suppose more than that we're protecting them from the truth for every second that they don't need to know it. I re-read today the email traffic from around the first summer of Rose's treatment and I get comfort again from the support of friends and family that we had then and can't have just now - I know it's out there and when we need it it will all be there again.

In the autumn we were referred to the Family Therapy unit at the Maudsley by our GP for the children to talk about what they have been through but this week Simon and I ditch the kids, go alone and tell our story. It's a place for the two of us to face the future together up close instead of trying to Christmas shop and drink our way through it. It's the most appalling hour since the day we were told but it's a tiny start at taking it out of its box and looking at it. Then we put it firmly back in its box and go home.

Tonight Felix decides to skip scouts, Simon is at his Christmas party hopefully seeking anaesthesia in alcohol, and the kids and I decide to light the fire, put on a dvd and open a big tin of quality street. Just as I am cooking supper and the kids are ballroom dancing around the kitchen Kathy, Rose's oncologist, phones from the Marsden. She wants to run through Monday's forthcoming meeting with the thoracic surgeon and remind me that Simon Jordan will not operate if the tumours have got bigger or more have grown since the first scan. Just in case it's slipped my mind.

Friday 4th December

2009-12-04T18:59:00.009+04:00

The rain has finally stopped. It has rained non-stop for weeks - so hard it has brought down the ceiling in the spare room where the rain is pouring through the roof. When I think back to the last few weeks it will be against the backdrop of a monsoon starting with the day at the Marsden when we couldn't see the road through the rain. But today it is blue and sunny and freezing.

The children are in advent heaven - they have got chocolate calendars, Playmobil calendars, an advent candle...so many things to fight over and all before 7.30 in the morning. There is too much excitement about the next few weeks to think too far into the future and I decide to seize this moment of optimism/denial and go and get our tree - it's far too early but who cares. I get carried away, buy mistletoe, a wreath, more decorations that we don't need, more candles and the tree. It's brilliant.

Tuesday 1st December

2009-12-02T01:19:00.008+04:00

We've known about Rose for four weeks. Our whole life now is a fantasy - Rose goes to school, to clubs, to play dates, to Brownies, to violin lessons. She has never looked so well or gorgeous or been so much fun - she has colour in her cheeks and is packed full of seven-year-old energy and life. I literally cannot believe this is happening to her. Tonight I picked her up from a friend's house - the girls put on a show and sang crazy songs giggling so hard they couldn't get the words out and as we left I wondered whether she will ever go back to that house again. My mind has a life of its own while I go through the daily motions of school, tea, homework, stories, bed. The days are ticking by and this Christmas amnesty will not go on forever. Today a repeat CT appointment fell through the door for 5th January and I felt sick. I wanted to phone the Marsden and say she couldn't make it, it's the first day of term, she's got stuff on that day, she's busy being seven.

I read a report from Medline sent to me by a friend about a Canadian girl, an osteosarcoma survivor from the 70s, who had 11 lung resections to remove metastatic tumours in a two year period. They treated her cancer hard and aggressively and she survived. I love this report so much that I print it off and put it in my purse. The same day I have to take down two fellow osteosarcoma sufferers' blogs from 'Favourites' on my pc at home because they have both died this month. I know in my heart the Canadian girl is a statistical blip.

Monday 30th November

2009-11-30T17:21:00.005+04:00

A whole week of limbo land has passed. This is the new normality. Everything is as it was - every day we all go to the places we're meant to go to and do the things we're meant to do as if nothing had happened. Is this denial? I'm not sure it's that but no one knowing and the hospital not doing anything is certainly helping us make believe that it hasn't happened at all. Perhaps when they re-scan her lungs in January the tumours will have spontaneously disappeared.

It's very comforting no one knowing - a bit lonely but on balance comforting. I am saved a whole melting pot of peoples' pity and fear which is inevitably round the corner and the longer I can hold it off the better. There's nothing to say and I dread people trying to say it anyway.

Four weeks till Christmas and Rose's 8th birthday - she's got a lot to look forward to and that's all that matters now.

Monday 23rd November

2009-11-27T18:58:00.009+04:00

I need a plan. I need to control tomorrow today and to know a little bit more about how things will go for Rose. So I make an appointment to see our GP to tell her about Rose's relapse. I can feel the Marsden slipping away and know that this is how the future will be - they are about actively treating children suffering from cancer and that's not us any more. Our GP is lovely although I hadn't realised she is also about eight months pregnant. Because I need a little more pain in my day. We have a conversation about community palliative care and I cry and cry but then feel much calmer. I am facing it all now and it simply can't get any worse - but it might get better. On the way home just-call-me-Toni, the Australian registrar from the Marsden, phones fresh from the video conference with the Brompton. They don't want to do anything until three months after the original chest x-ray, re-scan and see how fast-growing the tumours are. We had agreed not to put her through her any excessively aggressive treatment but this strikes us both as just a little too hands-off for our liking.

I take the name of the thoracic surgeon in the meeting and later that night Simon and I look him up on the internet. He is the consultant attached to the London Sarcoma Service working out of the Brompton and specialising in paediatric bone tumours with secondary lung metastases. This is our man. He is about our age and has a confident smile. We sit staring at his picture on the computer for ages willing him across cyberspace to have all the answers. Poor man.

Sunday 22nd November

2009-11-27T18:48:00.006+04:00

The weekend is not going well - hot on the heels of parents evening comes the Frost Fair at Rose's school. The school is dressed for Christmas, it's a frenzy of Santa's grotto, mince pies, presents to buy and healthy children everywhere. Rose is in a state of feverish over excitement and I feel sick to my toes just to be there. I stand paralysed among hundreds of parents listening to the senior school girls singing carols unable to move or speak. I play this-time-last-year and this-time-next-year in my head. Eventually I coax her away with a present from Santa and we go back to Dulwich College to the rugby where I feel a lot safer.

Friday 20th November

2009-11-23T13:30:00.016+04:00

A long, long, long day. We tell Rose casually this morning that oops we need another scan isn't that annoying but hey, we can have McDonalds on the way home... she's fed up to be missing Friday afternoon golden time at school and very worried that she might miss the popcorn machine being brought in. I wish so much she didn't have to come with us. Simon is coming with me - we have made a policy decision. Scans and appointments I will do alone but anything with results we will do together.

We have fallen back into our old Marsden routine as if it were yesterday. It was. The car parking, the coffee, the anaesthetic cream in daycare on all Rose's veins before the canula can go in, the playroom... we stare at the playroom walls where they are filling up with themed Christmas decorations. Is it a year since Rose and I made snowmen, red robins and decorated stockings? Am I seriously sitting here watching her enter the Marsden Christmas card competition for the second year running? 'New' parents are entering into it all with the enthusiasm of desperation that I remember so well - I am suddenly envious of them. Their children may be bald and have central lines in their chests but they are first-timers - their futures so much more full of hope than Rose's.

We go to CT and sit in a huge waiting room full of people with cancer. They all look pityingly at Rose with her bandaged arm and canula - they are mostly old. Rose sings, listens to her ipod, reads the Worst Witch and eventually we are in and going through the whole CT protocol all over again. Four scans in less than two weeks - please, please let this be conclusive.

Toni, the upbeat Australian registrar, tells us that even on rush the radiologist and a consultant need to review the CT and it will be a couple of hours. While Simon sticks and glues with Rose she shows me the results of every scan we've had in the last two weeks - we look at the plain film of her tibia (nothing) and the bone scan of her tibia (clearly something) and the heartbreaking chest x-ray with two little Trebor mints sitting in the middle of her right lung. It is inconceivable to me that something so tiny can be so unstoppable - that Rose is on a train now that all the advances in modern medicine can do nothing about. The best on offer is the same poison that didn't work the first time - and even that will only buy time not cure. Suddenly I can't wait - I need to get Rose out of this place. Toni agrees to phone us within an hour.

And finally at 7 o clock she phones - they are happy that the CT hasn't found anything in her tibia. Kathy was wrong. I resist the urge to drive down there and stab Kathy through the heart with her own letter opener for what she has put me through this week. She wrote my daughter off without it transpires even having looked at the bone scan herself. Toni quickly points out to cut me off that Rose still has secondary lung metastases but that she may now be a candidate for thoracic surgery. Her case will go into the video conference with the Brompton on Monday night. She tells me to have a really great weekend. I tell her to fuck off. In my head.

Thursday 19th November

2009-11-23T13:17:00.005+04:00

One more day until we go to the Marsden for the CT and results to find out if Rose is dying in one place or two. Taking and collecting from school is now almost unbearable - I dash in at the last minute at either end of the day and try to block out the 200 healthy children running around me.

Today I am at college and at lunchtime I walk out to get a sandwich. Toni, a registrar from the Marsden, calls me on my mobile and my heart lurches - she has reviewed the bone scan and plain film and in her opinion the suspect lump in her tibia could just be something benign on the prosthesis. We still need to do the CT tomorrow. Perhaps Kathy's palliative care talk last Friday was just a tad hasty and there is something we can do with the tumours on her lungs. My mind is going round and round like a rat on a wheel and I am insane with worry. Five minutes later someone else rings me again on my mobile from the Marsden and I think I am going to have a heart attack right there in the street. It's a very cheery man I have never spoken to before offering Rose charity tickets to a concert - 'her name has come up as a suitable candidate'. I bet it has. I turn them down politely and turn my phone off.

Wednesday 18th November

2009-11-18T13:31:00.012+04:00

Last night I went to parents evening at Rose's school. 'I'm not going', I said to Simon. 'Yes, you are', he said. He's in Paris or I would have made him go. I waited for half an hour behind two sets of intense new parents who were interviewing the teacher in slow motion - I have no idea why I'm there or what I'm supposed to say. I don't care any more about her spelling, her maths, her extension reading, I don't want to be here, and all I can think is 'is this the last parents' evening I will ever go to for Rose?' But when my turn comes I ask the right questions and listen attentively. I am here for Rose and that's all that matters. Back home she is waiting excitedly to hear what I thought of all her work and exactly what her teacher had said. I make most of it up and she goes to bed happy.

Friday 13th November

2009-11-16T19:12:00.016+04:00

We're way beyond good and bad omens here but the rain is literally bouncing off the windscreen on the way to the Marsden and it is Friday 13th. It hasn't really even got light by the middle of the morning and we wait for hours to see Kathy. It's Friday again - the clowns are back. I don't think they're funny any more. The only reassuring thing is that Rose is safely in her classroom taking her weekly spelling and tables test. Whatever they are about to tell us they can't spoil her day.

So anyway. Finally we see Kathy who is nervous and calls Rose 'your daughter' in a far more formal then usual way. Unbelievably the news is worse. There is something, something that they think is a bone lesion, on the bottom third of the tibia in Rose's right leg. It looks like a bone metastasis. Full house. Bone and lungs. We are disbelieving and while Kathy is still talking the whole room spins and humiliatingly I have to spend the rest of the meeting lying on her examination couch. Better than last week when I threw up in her sink. The delay has been Kathy speaking to Professor Jeremy Whelan at UCLH for a second opinion - he says he has had good outcomes with 'one or two' patients following bone and lung mets who have had follow-up chemo. We shake our heads. We've had seven sleepless nights and almost two years prior to that to discuss this - she's not going to die bald, emaciated and in the Marsden. Kathy doesn't even put up a token protest. I realise that if we demanded the full works - surgery, more chemo, radiotherapy - they would do that too. But it has come back fast and in two places - Rose is not going to win this. And we're not going to buy ourselves more time with Rose at her expense. Kathy goes straight into talking about symptom management and pain relief. We are having a palliative care conversation about our seven year old. She asks us to take Rose to Kings after school for a plain film x ray of her tibia to confirm the bone scan but tells us she doesn't see what else it could be. We are really calm and leave.

Back in the car in the lashing rain in the hospital car park the calm breaks and we are both hysterical - it is inconceivable that 15 miles away our seven year old daughter is running round a playground with these tiny tumours in her and they can't save her life. They've got it wrong, made a mistake, we've made a mistake, we must do more chemo, six more cycles might buy another 18 months, I have to have that time, and on and on until we finally stop crying. It takes too much energy and we need all the energy we have just to keep breathing.

We tell Rose that Kathy forgot to get an x-ray of her leg on the Monday and we are off to Kings. She's not alarmed. I go and get Felix and Simon takes Rose to Kings where unbelievably they can see nothing on the x-ray on her tibia. They speak to Kathy and she asks me to bring Rose back to the Marsden in another week for a CT to confirm whether or not there is anything there. Jesus Christ. This is a really important distinction. If her cancer is back just in her lungs we will go for thoracic surgery and take our chances on tumour removal without chemo but if it's back in her bones too this is pointless. We cannot believe we have to wait another week to find out. But we do.

Wednesday 11th November

2009-11-15T20:05:00.011+04:00

The week is eerily normal. There are no results from the bone scan as Kathy wants to see us both in clinic on Friday - without Rose. We know there are secondary tumours on the lungs and the bone scan is to see if Rose's cancer has spread anywhere else. The outlook is already poor but with multiple secondaries it would be appalling. I try not to think. Instead I go on a school trip with Rose to Sydenham high street mapping the area and interviewing shoppers. It is raining and cold but my little group of girls are great and they distract me all afternoon. Rose loves it that I'm there and we have fun.

A boy called Henry Fraser from Dulwich College - a sixth-former and one of the first XV - has had a terrible swimming accident and has been paralysed from the neck down. Dulwich College has thrown itself behind supporting his family in the appalling fallout from this accident. Every day there is another initiative - fundraising events from the boys, a charity rugby match among the staff, an auction of promises, everyone desperate to help and determined to raise a huge sum of money to help them. I feel so proud of the school and I cry for Henry Fraser because today I can't cry for Rose any more. We have been on the receiving end in a tiny way of this kind of support from Dulwich and I love that in a school of nearly 2000 boys every single one matters this much to them. Maybe I just like big institutions. Which is good because when all this is over I'll probably end up in one.

Monday 9th November 2009

2009-11-15T11:08:00.021+04:00

Rose and I go back to the Marsden.

It's been a bad weekend - Simon and I both fall back like professionals into the illusion of normal and the days have run on like any other weekend. There has been violin, cricket nets, homework and the X Factor. But there have also been two sleepless nights, a tidal wave of tears and anger and we are both exhausted. It's almost a relief to be with just Rose and doing something - even if it is another bloody scan. I can't even remember what we told her it was for but she's very cool - she knows the drill. We pack snacks and drinks, her DS and her ipod, her reading book and Snuffles and off we go.

This time we see more people that we know - word has spread among the nurses, we bump into the dietitian on the stairs, the physio, and more of the play specialists. Gratifyingly they are all very upset. But Rose and I are fine - in a surreal world of make believe I buy into the routine benignness that I have sold to Rose. She copes fantastically with another canula, an endless wait for the isotope to be injected and then off we go to radiate round Tescos and McDonalds for three hours before the scan. We buy Harvey's Christmas stocking, lots of chocolate and a Bratz annual. We have a really nice time. How sick is that.

I have already decided with Simon that I will try to 'read' the scan as it happens - in Stanmore the first time this was easy. The giant ink splat of black tumour in her right femur was hard to miss and there were no other sites - this time the machine is different, the images are different and the radiographer is acutely aware despite my best efforts at nonchalance that I am watching the screen intently. Rose gets to watch a dvd and lie in a room with Jungle Book characters on the wall - she stays calm until the scanner is almost touching her nose and then starts to cry. A giant sob lodges in my throat and it's suddenly almost too much for us both but then it's over and we're out.

Friday 6th November 2009

2009-11-14T16:54:00.022+04:00

I suppose if you stand under a tree long enough in a thunderstorm the chances of it coming down get a bit higher. Today the tree came down.

Another Friday morning in Kathy's clinic - all becoming a bit routine. My guard lowered I was making a mental shopping list for the Tesco Extra round the corner from the Marsden all the time we sat and waited for Kathy. The play specialists have hired clowns for the Friday morning clinic - they were very funny and Rose was distracted. But the child in front of us left and still the wait went on. Behind the clinic door in our last few minutes of ignorance when we all still had a future Kathy was busy making CT and bone scan appointments with the chest x-ray we hadn't yet seen sitting on her screen in front of her. A perfect little 7 year old chest - with two metastatic bone tumours sitting in the right lung. Peekaboo. The pantomime villain of cancer is back.

The door of Kathy's office, it occurs to me half an hour later, is like a crossroads - left for McDonalds, Tescos, freedom and home, right for canulas, blood tests and the CT department. Rose didn't even murmur - back into daycare, anaesthetic cream on every available vein, needles and drips back in place. Like we'd never been away. 'Is it an infection?' she asks us. 'We're not sure, sweetheart. Kathy just needs a closer look.'

Learning to live like Pooh

2009-06-06T12:10:00.004+04:00

The wind was against them now, and Piglet's ears streamed behind him like banners as he fought his way along and it seemed hours before he got them into the shelter of the Hundred Acre Wood and they stood up straight again to listen, a little nervously, to the roaring of the gale among the treetops.

'Supposing a tree fell down Pooh, when we were underneath it?'

'Supposing,' said Pooh after careful thought, 'that it didn't.'

It didn't. Rose is fine.

Oh lets just move to the isle of wight...

2009-06-03T16:49:00.020+04:00

Hello to anyone out there still bothering to log on - have been paralysed by inability to blog for fear of alienating my tiny readership with my woes. So won't concentrate on them then. Still wading through treacle and being generally ineffectual non-coping mother.

We went - big drum roll - to the Isle of Wight after an absence of more than eighteen months. It was HUGE for all of us but mostly for Rose for whom it is the definition of normal family holiday fun - unable to remember a time before crabbing on the Duver and collecting shells for her tiny bedroom there she was beside herself with excitement. Anti-climax would surely follow such a longed-for trip. But the island delivered as it always has for us - back in time to the 1950s and for us to a time when the biggest worry we had was which beach, which pub, which walk? Bittersweet - my cycle of grief is nowhere near complete and the pain of not watching her cycle up and down the lane and the carefree memories from a time when I didn't know what a hickman line is was every bit as painful as I had anticipated but she scootered and she played and she crabbed and sunbathed and the boys took her out in a doughnut in the sea and all was as damned close to perfect as we could have ever, ever hoped for. The sun shone all week - except tragically on the day of Felix's cricket match which was the central reason for going! - and having been in a hospital all last summer and about as pale as it is possible to be Rose and I burned really badly! We went to all the old haunts and a couple of new ones and every night we tucked her up in her little girl's bed in her tiny island house and she was happy, happy, happy. A big box ticked, normal holiday action resumed, god in heaven, all right with Rose's world.

BCRT Awareness Week is almost upon us so standby your diaries - if you haven't already been invited to a cake bake, cake sale, coffee morning then you are probably about to be... And there is another brave pioneer out there who needs some support too. Last year we made contact with Kay Hylton an adult survivor of osteosarcoma (god how I love those words) who was going to run the London Marathon this year in aid of Rose and the BCRT. Kay very selfishly had a massive fall and broke her coccyx which put paid to that and probably a lot of her other plans too - like walking - but up to the plate is stepping her fabulous son Ben. A third year medic he is competing in July in Ironman Switzerland for Rose. He will be swimming 4km, cycling 180km and running a full blown 42km marathon. I think if I had lots of chocolate biscuits and several cups of tea along the way I could probably manage the swim so I am pretty awe-inspired by this superhuman feat of fitness and equally awe-inspired that he has chosen Rose for his fundraising mascot. You can read all about his challenge on his justgiving page at www.justgiving.com/benhylton1 where you can also conveniently leave your credit card details... I know, I know some fundraisers just won't go away will they. Sorry.

Tomorrow and Friday back to Stanmore and the Marsden for our 48 hours of gut-wrenching, nerve-jangling hell. So no stoicism anticipated then.

Not waving but drowning

2009-05-11T11:11:00.004+04:00

Sorry for the big delay in posting and for any anxiety caused and thank you for all the texts, emails and messages asking after Rose and all of us. ROSE IS FINE, FABULOUS, GORGEOUS AND WELL. She's doing loads better than all of the rest of us! Actually Felix is fine too - the cricket season has started. Say no more. Life is about getting grass stains out of whites in record time, wickets, runs, and getting him from fixture to fixture. This blog is not about me and is not the place for an undignified expose of just how badly I am coping but by way of an explanation of the long silence suffice to say I seem to have crashed rather badly. Totally overwhelmed by the day to day stuff. Thank god for the sisterhood - I'm getting lots of help personal and professional and am praying that I'm looking back on this very, very soon. In the meantime it's really SCARY.

Back to Rose. I really meant to have new photos of the Twiggy/Mia Farrow/Kylie look for the blog but it hasn't happened - will try to put some on this week. I think we have finally consigned the braids to the dressing up box although they keep making the odd re-appearance when her confidence dips! Take it from me and I am totally unbiased - she looks absolutely GORGEOUS. Big eyes and a little gamine hairstyle - adorable. After a shaky first week back at school with lots of return trips home and leg pain (hmmm) she seems to have got back into the stride of it all and has managed one week with four full days including lunch 8.30 to 3.30! (What to do with all that time - I know have a breakdown.)

Last week not so successful - swine flu came to Dulwich with local school closures just to ramp up stress levels even further and an entire day was spent liaising with the Marsden and the Health Protection Agency about whether Rose should be given Tamiflu. In the event not and her school so far has escaped closure. But she stayed home for a day while she decided whether she was ill or not, decided against and went back the next day! With a bank holiday and her usual Friday off she had managed to escape most of the week... Higher hopes for this week that she might actually go in long enough to learn something! She's back in the playground too and trying her best to join in with her friends at break times - with varying degrees of success. Breaking back into friendships that have moved on, finding herself a niche in the class and physically keeping up with what they are all doing is all really hard but I'm sure that in a few more weeks it will be better. And the new school year will bring new girls into the class and shake things up a bit for all of them.

Mandy and Tayo are still swimming with her on a Friday morning in the DC pool - giving up their time for free they are taking her in solitary splendour in the 25metre school pool which she thinks is absolutely wonderful. Getting her supersonic leg strong enough to hold her weight up in the water is still a bit of a struggle and the lovely technique she had before she was ill is gone. Now more of an unsightly scramble to stay afloat with arms and legs windmilling everywhere but she'll get there! If she can come on enough to rejoin her swimming class she will be thrilled. Moving her on and finding the things that she can/will be able to do is what it's about now for Rose - maybe Brownies next!

More pix and more adventures of Rose to follow soon I promise.

Riding the wave

2009-04-22T18:18:00.000+04:00

While we were away over Easter I read a column in the Sunday papers called Gratitude Therapy written by a guy whose wife is on her third round of chemo to blast some particular bastard cancer. He wrote about the shadowlands in the early morning when he first wakes up and 'Mr Cancer' is lurking in the corners of his room, day, life and the wraparound fear of living with the cancer time bomb. Anyway one of their current coping strategies is to think every night of three fantastic things that have happened that day and share them with each other - gratitude therapy. I wanted to take a bunch of flowers to his house and tell him in person what an impact his piece has had on me. But obviously not enough to actually bother to find out who he is and where he lives. Anyway, we're doing it and it's a good technique. I have not turned overnight into someone thanking their stars that they have been shown the precious fragility of life and should anyone else moralise at me that I have a lot to be thankful for they are likely to lose an eye but it definitely beats staring blankly into the bottom of an empty wine glass. Gratitude therapy, riding the wave, accepting the futility of my fear and the tiny tiny tininess of all of this on a world scale - I'm trying it all.

But where I was really going with this was that over Easter we had so many tens of things to share with each other of an evening that our cup of gratitude was overflowing. Rose climbed and swung and trampolined and walked and walked and walked and zip-wired through the trees in a National Trust playground. When her braids fell off mid-bounce to reveal her Twiggy-like two inches of hair she shouted to the assembled crowds of children and their aghast parents 'I've got no hair because I had cancer! Keep jumping!' Go girl. I nearly burst with pride and admiration. We went to the zoo - always strangely life affirming, why is that - and we got closer to a giraffe than I thought was possible and their eyelashes really are quite spectacularly long. We played board games, watched films, Simon and I ate dinner together every night while Felix babysat Rose and from time to time we didn't even talk about her.

But because nothing is black and white or rational or logical in any of this I am feeling awful right now just when she is doing so well. Delayed shock and endless gnawing fear have taken a bit of a grip and my anxiety has gone into freefall - I can see nothing beyond the threat that hangs over Rose and every day that takes me further away from chemotherapy feels more and more dangerous. The open exposed waters of remission. I want a lifeboat and some guarantees. I need perspective and hope and optimism and to spend a lot of time with the man who wrote the gratitude therapy article. To get to where he is right now and to write that piece he has perhaps been where I am today.

Anyway today's three fantastic things which I will have to share with you as Simon is abroad are these -

For the first time in a year I collected both my children at the end of a school day. Granted Rose had been out for a couple of hours at lunchtime but she went back for the afternoon to make masks in art and had a lovely, lovely time.

She has just eaten roast chicken, potatoes, parsnips, broccoli and carrots for tea and about a kilo of strawberries.

The Apprentice is on tonight.

It's Good Friday so it must be Kings...

2009-04-10T22:54:00.015+04:00

No hospitals (until today anyway), holiday lie-ins, and lots of normal school holiday fun. Rose finally caught up with Felix who broke up weeks ago (or does it just feel like that) and finished her mornings at school last Friday. The plan is that next term she will go back in the afternoons although covering the two hour lunch break seems to be a problem so to begin with she will be coming home for lunch and going back for a couple of hours in the afternoon - another term of any kind of gainful employment/life disappearing into the blue. I vaguely remember life outside SE21 but can't be sure.

There hasn't quite been an Easter holiday physio amnesty but there's definitely been a lot less than normal. Last week I took her to the community physios' HQ to have her splinted from hip to ankle in a plaster cast which she will just wear at night to coax her leg into a 0 degree position. She wasn't very happy and I predicted nightly stress trying to velcro her into it but actually it's great, surprisingly comfortable (possibly not when the weather hots up!) and is definitely doing the job. Whenever we've tried not using some kind of leg splint she gets up with her leg stuck at -20 degrees and then can't walk at all. Not sure how long we'll have to do it for but anything that helps her get going has got to be a good thing. Combined with my other new physio initiative we are making good progress! Having used the treadmill with Amy during physio to really good effect (straight leg, reciprocal gait, lovely long stride) I decided that what we really needed was one of our own! Having used up our charity funding ticket on the trike I googled away until I found a cheap one to hire (inspired!) and it is now sitting in the middle of the house taking up lots of space, looking really ugly and doing a really great job on Rose's bent leg. We have even tentatively started to try a very slow jog but Rose's brain has completely forgotten the co-ordination of her feet and brain to do it and she gets very frustrated - for which read wildly and uncontrollably furious - so sticking at a nice slow walk at the moment. Secret agenda was to get Simon on to it every morning for 20 minutes and watch those two or three extra pounds (!) fall away but so far no good - if I left a trail of creme eggs to it perhaps I'd be getting somewhere... Anyway so far money well spent - and no, there is nothing we wouldn't try to get Rose back on the pirate ship. She's doing so well that the physios are going to start pulling back (aagghh) - with the swimming and the treadmill and the trike I have slightly shot myself in the foot as they can see that we are progressing so the sessions are going to become fortnightly after Easter and only five more hydro sessions for the rest of this school year. I'm dreading this as the moral support has been amazing and Rose responds far better to a 'professional' nagging her than she does to me but I know they are right and like everywhere else in the NHS they have lists and lists of new referrals all the time who now need them more than Rose does. We are hoping that with a supporting letter from our consultant the insurance company will keep covering our top up sessions at Crystal Palace so I won't feel totally alone with Rose and our home gym! The reality is that there is less and less to work on as it's really just a question of building up her stamina and practice, practice, practice. She hasn't used her crutches for weeks (tough love - we just don't let her anymore) and gradually she has walked further and further and further. Amy has brought hockey sticks, tennis rackets, velcro tennis and swingball to the house, her trike is finally here, and we are starting swimming lessons again next term. Apart from the thumping limp and bent knee you would hardly know there's a problem!

So apart from all of that she's having a regular old time - play dates here and there, arts and crafts at the Picture Gallery, swimming, cinema, staying up late, waking up late and everyone loving the break in routine. It was all going swimmingly until a couple of days ago in the pool she suddenly wailed in pain and showed me her tummy. Just when I thought the gastrostomy had finally rolled over and kicked its legs in the air the site where it's healing (or clearly not healing at all) has sprung a lovely infection. Good Friday clearly not Good Friday at all without Rose making an appearance at Kings - cue bitter irony - but happily this time it was brief and efficient and armed yet again with anti biotics we have come home to try and kick the bloody thing into touch once and for all. We've had a fabulous day here with friends, a huge Easter egg hunt in the garden because you just can't start eating chocolate too soon at this time of year and tomorrow we're going away (yes AWAY!!) to Suffolk for a few days and I CAN'T WAIT. We're not taking the wheelchair, we're not taking the crutches, we're taking lots and lots of wine and even more chocolate and our two amazing, gorgeous, beautiful children.

Oh what a week that was

2009-03-31T19:23:00.038+04:00

It was good and it was awful but it ended up all more good than awful...

On Monday lovely David Fisher from the BCRT came a ridiculously long way south to talk to some of the boys at Dulwich College about everything the charity does and everything we have done - and why. I took Rose along and felt very proud of everyone and everything - the school, the charity, my little girl, the boys etc. I hadn't anticipated how daunting the Great Hall full of sweaty teenagers in blazers would look - and it was only years 9 and 10 - but Rose and I at least could skulk in the audience with Calvin while poor David had to front it out on stage next to the Master - he did an absolutely top job and if only one of the 400 nose-picking herberts was listening and took something away from it then it was worth the trip. David pitched it perfectly and told them all the inspiring story of Laurence Whiteley, a boy of exactly their age, who is not only an osteosarcoma survivor but a paralympic swimmer. He also showed them the DVD of petrified Calvin and Tayo - billowing BCRT t shirts and all - in free fall which of course they loved because Calvin and Tayo are authority figures caught on camera doing something scary and looking very scared. Rose loved it all - the boys had only seen her in the school magazine until now and there she was large as life and twice as fabulous. She declined the chance to sit on the stage - thank God - but basically loved all the attention. It was all very emotional and wonderful really. And it meant that Rose could tell Felix that she had had orange squash in the senior school staff room and got to go in late to school. There was meant to be a commemorative photo of Rose flanked by Calvin and David at this point but Felix had filled my camera with pictures of dead leaves and complete rubbish and it wouldn't save it - I'm really sorry boys it will have to wait for the conference now. But they're both gorgeous and you'll just have to take my word for it.

The middle bit of the week was really just killing time and playing at normal until the end of the week when leg and lungs were both being scanned over two days at Bolsover St and the Marsden. Hideous, dreadful, awful, terrifying, not getting easier, not sure it ever can or will but ultimately both were fine. Not sure if we can cope again with the double whammy so close together although in our naivete had thought it might be A Good Thing to get them over and done within two days. By Friday night we were both so wrung out and strung out that the euphoria just didn't come at all. Think perhaps a leg-and-chest two for the price of one x-ray session might make it a bit easier but different hospitals, cultures and areas of responsibility seem to make that impossible and this is our future. Psychologically none of us are designed to cope with the unimaginable horror of looking for cancer in our children and neither of us are bearing up well. What did you do today? Oh, went to a meeting, grabbed a sandwich, took my daughter to see if her life-threatening illness is back yet... I don't know if we need drugs, counselling, a wild night on the town or just a break from Rose but we are not coping very well with 'life on the outside'. And Thursday and Friday certainly proved the point.

Like all these things the whole intolerable experience is made either slightly more tolerable or utterly intolerable depending mainly on the sensitivity of the doctors involved and the spectrum is large. I could rant and rant about the Marsden as always - our consultant has to be dragged by her hair into a meeting (despite the fact our appointment was geared around her skiing holiday especially so we could see her) and there is seemingly no doctor too junior to look at Rose's chest x-ray and be unable to decide whether it is clear or not. There's a reason why parents don't look at x-rays (ohmygod is that an organ or a tumour?) but they just don't get it. I haven't got the energy any more to cope with my own fear on the one hand and their casual ineptitude on the other - so this is how the compliant patient is born. Out of resignation. I'm not doctor bashing and this is not Daily Mail journalism but I challenge any parent to survive a Marsden outpatient clinic with their sanity and sense of humour intact. Mr Briggs' team at Stanmore, on the other hand, and all his great colleagues lead the way in patient care exuding calm confidence that all will be well and that even if it isn't they have a plan for that too. They praise Rose to the skies, make her laugh, try to make us all relax and they remember that every second of it is torture until the results are in. They don't have a playroom resembling the Disney Store or five play specialists for every ten children and Rose can't make masks and bookmarks while she waits - it's a bit grim and very Dickensian but she has a consultant there that knows her name and turns up for the appointment. Anyway. Got that off my chest. Not the least bit interesting to anyone apart from us but there you have it.

So slightly bruised and battered to add to the general status quo of bruised and battered - but the news is good, brilliant, wonderful and Rose is still in remission. The Porta Romana team ran their hearts out to celebrate at Sunday's Reading Half Marathon and have raised thousands and thousands of pounds to find the drugs and the answers to keep her there. We raise a glass to all of them with lots and lots of love and thanks.

Two down

2009-03-27T23:49:00.003+04:00

Lungs are clear too. Or 'pretty clear' as the junior registrar finally announced after 15 minutes of looking at x ray IN FRONT OF US. More about that when energy levels restored enough to do more than raise glass to lips, drink, refill glass etc. Until then thank you for all the texts and emails today and yesterday - it's really helped get through a totally hideous two days.

One down

2009-03-26T22:50:00.004+04:00

The leg is clear. One down - one more to go tomorrow. This isn't getting any easier. Surgeon told me today I am just going to have to get used to it...I really, really don't want to.

One year on

2009-03-22T23:34:00.021+04:00

So yesterday was D day and I'm glad it's over. Diagnosis day was a year ago yesterday and every nano second is as fresh in our memories as if it happened last week - this time a year ago we were staring blankly into a terrifying future with our heads full of unanswered questions and absolutely no idea what was in store for us all. Probably a bloody good thing. One brief encounter with a junior orthopoedic doctor on Good Friday at Kings was all we'd had but it was enough to know that things were very, very, very bad. The first MRI, biopsy and bone scans were all a few days away but it was already all a done deal, tumour diagnosed from a plain film x-ray, news broken standing up in a side room. Not a George Clooney or a helpline in sight.

Although a year on I could still say that most days I feel like we are staring blankly into a terrifying future in among all that there are days of happiness and euphoria and there have been more of those this weekend. I copped out totally of the potential for playing this-time-last-year all day with Simon and very selfishly went out for the day with a good friend. Definitely the best thing for all of us. The children were oblivious and Simon and I got through it in our own way and toasted each other's complete and utter magnificence in the evening!

Rose has had another great weekend - she has had a friend to play, been to see Marley and Me at the cinema, had supper at a Chinese restaurant and lunch today at Pizza Express (living in the moment is very, very expensive) and celebrated a significant family birthday. Snuffles was one today. See slideshow! For anyone who doesn't know who Snuffles is he is Rose's most adored (cuddly) dog. Bought only a year ago today he was of immediate and very special importance in her life and they have been inseparable and unseparated for a year. He has been into nine operating theatres, been put to sleep with his own mask for nine general anaesthetics, been into MRI, CT and bone scanners, slept most of the last 12 months in a variety of hospital beds in a variety of hospitals, his floppy, crusty ears have dried her tears and snot and been dragged through a variety of hospital meals, he has been to school and playrooms on wards up and down the south of England, been the cause of many panic-stricken moments when he has gone missing (including once being hauled out of the hospital laundry by a nurse and I in Stanmore) and is almost as loved and necessary to Rose as her real dog. And probably us. So we couldn't let the moment pass. As a counter to the more spine-chilling emotion of yesterday Rose and I planned a proper birthday party for Snuffles this morning. A select gathering of Build a Bears were invited to the party (proper invites and everything), fairy cakes were made, banners hung, balloons blown up, hats were worn (yes, we all had to but funnily enough no photos of that), presents given, happy birthday sung, candle blown out etc etc. Top fun all round and we now have an infinitely more cheerful way to remember this particular couple of days in March!

Another adrenaline fuelled week ahead - how they do roll round - with Stanmore and the Marsden on Thursday and Friday for leg and chest x-rays. And just as we have all year whatever the outcome Simon, me, Rose and Snuffles will face it all together.

But life is also completely crap

2009-03-17T20:09:00.018+04:00

So it turns out this week that following the progress of people we know with osteosarcoma (personally or 'virtually') is a mixed blessing - the wraparound reassurance of not being alone out there and of success stories gone before us can turn in a moment into wraparound terror when things take a turn for the worse for them. Two osteosarcoma patients/survivors/complete and utter heroes whose progress we have followed through the BCRT have this week relapsed with secondary tumours on their lungs. And this has taught me a few things in a short space of time.

Life is crap and randomly cruel. This I already knew but was busy trying to forget.

I am not strong enough to cope with the fear of recurrence for everyone I now care about as well as for Rose.

That this is not a good cancer to have.

And that, having read both their incredible reactions to the news, that I can never hope to be as brave or positive as them. Both adults, one a father of four, and the other a beautiful young woman with her life in front of her who has given us support and strength when we thought Rose might never walk again, are now facing Round Two with humour, dignity and courage.

So that's taken the shine off our week really. And I am now unhealthily and obsessively checking their websites every hour in case I have missed something. And that's the other thing it's taught me I suppose - that quite apart from my fantasy of Rose leafing through this blog as a very, very, very old lady I, like them, am writing this blog for me, me, me as a lifeline to the outside world and as a coping strategy in a world where there are no rules any more and nothing is safe. Yesterday the sun shone all day, Rose jumped on the trampoline for the first time in a year and I was euphoric all day. Today my world is in black and white and there is a sick knot of fear and dread in the bottom of my stomach. And it hasn't even happened to Rose. Told you I wasn't brave.

So anyway. Moving on.

The gastrostomy is out. The last little dingly dangly tube sticking out of my little girl's body is out and binned and after a day at Kings today she is safely back in her rightful place on the sofa ordering me about, ploughing through a pile of dvds and hopefully looking forward to a gigantic supper of real food.

She loved Felix's play every bit as much as we anticipated she would and we loved watching her love it - she's been to another top party (see chocolate frenzy photo), had a bit of a cold, played in the garden and life has been 'normal' and fabulous.

Humour and dignity will be back next time I promise. To Andy and Hannah lots and lots of love.

Life is grand

2009-03-11T16:43:00.045+04:00

Things that Rose can do:

Go upstairs like a normal biped, one step after another, alternating feet

Go downstairs hanging over bannisters for dear life and with slightly less confidence than above - but still without crutches!

Walk round London zoo for two hours with one crutch and (almost) no complaining about pain

Walk almost to the bottom of Alleyn Road and back (new physio goal - very long road) with no crutches

Walk around the house with no discernible limp (ok this one is a bit generous but when sufficiently warmed up - like the finely honed athlete that she's on her way back to being - she can do this)

Balance on her right (bad) leg for five seconds. At the beginning of the year she couldn't put ten per cent of her body weight through her right leg and now she casually stands stork-like on it as if it had never been a problem and looks at me - 'what?'

Things that Rose still can't do:

EAT. AAAGGGHHHH.....

She's just going to have to start as next Tuesday she's going into Kings and the gastrostomy is COMING OUT. Going to celebrate with a KFC bargain bucket and a tray of Krispy Kreme doughnuts...not really but you know what I mean. We met the gastric surgeon last week and his side of things sounds straightforward - put her to sleep, pull, stitch, wake her up... but how Rose will fare without 750 calories of liquid gold every night we will have to wait and see.

So it's been more days of health, happiness and wellbeing for Rose - parties, play dates, outings, school, World Book Day (she was meant to be Horrid Henry if you're struggling!) the zoo, LOTS of boring physio but it's all paying off now. The endless rounds of exercises to get seemingly absent muscles to flicker into life have slowly produced dividends and although she's got miles to go when she puts her mind to it she can basically walk. Special mention has to go to Rob at Crystal Palace Physio who now line dances with Rose in the gym wearing a scarlet cowboy hat (yes Rob not Rose), stretches her (literally) and pushes her (mentally) whilst teaching her about music all at the same time. The walking is not something we took for granted was ever going to happen and we are of course giving ourselves - as well as Kate, Rob, Amy, Barbara, Michelle, Tracy and all the many physios she's worn out in the last year - loads of credit for how well she's doing. But it has all been Rose's hard work and bravery and hers alone. 'Am I all better now, Mummy?' Yes my darling gorgeous fabulous princess pink I really think you're on your way.

A huge thank you is due again to lovely Tayo. Skydiving clearly not enough of a challenge for him he set the DUCKS Year 1 and 2 children a sponsored swim up and down the DC pool in aid of BCRT. As if it isn't amazing enough that five year olds were swimming 20 lengths and six year olds 40 lengths he also managed to raise over £3,000 in a morning. Having never managed to cobble together more than a tenner in sponsorship money whenever either of my children did anything at all I think this is quite impressive!

It's Felix's school play this week too and Rose is now word perfect - which apparently most of Year 5 and 6 still aren't! She is so excited - and it's hugely symbolic for us. This time last year she approached Treasure Island similarly enthralled, was word perfect, sang and danced every song for weeks and sat through two performances in raptures - and it was almost the last thing she did before being diagnosed. She's had a busy year since the last Year 6 production but she'll be there right alongside us singing away for all the world as if last year never really happened.

She made a wish...

2009-03-02T20:43:00.015+04:00

A long, long, long time ago when Rose was a shell of a child on chemo and tied to a traction bed two lovely volunteers from a fantastic charity called the Make A Wish Foundation came to visit her and to ask her what she would most like in all the world. A sick bowl? To be able to get up and walk away from her awful life? For them to go away so she could go back to sleep? It was really hard to imagine Rose ever doing any of the things they suggested and all seemed to belong to another world and another lifetime. But - luckily for us - they've seen it all before and knew that one day Rose would be back out there living her life and they persevered with ideas and thoughts, kept getting back in touch through the rest of her treatment and eventually when they could see the time was right started to put together the most amazing wish for her. Rose's wish was to be a princess for a day - what else for a little girl who's been known as Princess Pink for as far back as she could first throw a pink feather boa round her shoulders and clicky clacky around in little pink Disney heels? As the weekend grew nearer the calls from lovely Sally at the charity came thick and fast with requests for shoe size, dress size, seven different head measurements for a bespoke wig, favourite colours, interests, favourite food and so on and our excitement started to grow...

Well it was just all amazing and rather overwhelming really - 24 hours of being just spoilt rotten in the most beautiful surroundings and the rest of us all got to tag along too! Obviously just as general lackeys and bag carriers and it was firmly ALL ABOUT ROSE but we were on the ticket... Princess Rose's home for the weekend was beautiful Amberley Castle in West Sussex where we had a suite (king size four poster bed for the children, z-beds for Simon and I!) which was STUFFED with clothes, toys, make up, jewellery, a dressing gown with Princess Rose embroidered on the back, pink fluffy slippers, sweets everywhere, sparkly shoes, satin gloves, evening bags, THE DRESS (see pic), a customised Hannah Montana-style wig, tiara, I'm sure I'm forgetting lots of important freebies but you get the general idea. It was little girl heaven in a bedroom. Before we had even had time to bounce on the king size bed it was time for hotel brunch (princess style jam sandwiches and chocolate eclairs) and then Princess Rose's beauty treatments to begin. Almost whimpering with envy I watched Rose be manicured and pedicured and made up before she was escorted outside to her horse drawn carriage for a gentle ride through the Sussex villages to the local hostelry and back again (by this time photographer in attendance for added pap factor) to meet her chauffeur driven limo. Into Chichester to a branch of Monsoon where FOUR sales assistants danced attendance on her, having kitted out a changing room with a lacy throne and a whole rail of gorgeous 7-8 yr old clothes. Many many outfits later it was back in the limo with our enormous carrier bags for a much-needed cup of tea and breather back at Rose Castle before the grand finale of a three course a la carte dinner in a private dining room with open fire and Princess Rose in all her fabulous finery. Slightly knocked Christmas Day and all seven birthdays into touch really - it was a great day. Simon and I survived the z-beds with the help of a bottle of wine and a good sense of humour and chauffeured the princess and her brother safely back home the following morning after a breakfast fit for royalty. Rose is still putting it all away and arranging and rearranging her jewellery (some of which I have really got my eye on) and her new clothes and toys and we will be reliving it for weeks. Sally - thank you to you and to all the people who gave their time to Rose this weekend. You definitely made one small princess very, very happy.

So - back to earth with a bump and back to school if only to make all her friends green about her weekend. She has enough boast-and-tell souvenirs to keep her going for the rest of term at least... Normal business resumed - physio this afternoon, Kings tomorrow, a gastrostomy to sort out and exercises to do but she will never forget her princess weekend and neither will we.

Tube trouble

2009-02-26T21:47:00.009+04:00

So - it was pretty much a fabulous week as you can see from Rose's edited highlights! Why write 1000 words when she can sum it all up so well in 80...I should get her on the case more often. It was my first attempt at a 'normal' school holiday without Felix being spirited away to friends and with both of them clamouring to do and see an unrealistic amount of people and stuff. Pulled it off but two unscheduled and unwanted pit stops in Kings for her b****y gastrostomy were really, really dull. It's definitely time for it to come out - I would rather hold her down and force feed her Krispy Kreme doughnuts now to get her calorie intake up as it has started to become more than just a little bit troublesome. Red and sore by halfway through half term Kings took a couple of days to decide how to treat it by which time it was oozing pus (ooh lovely) and a vivid shade of bright red... so back we went. Another day of (Felix's) grand plans scattered to the winds - anyway we've now had a course of anti biotics but it's still not happy, is sore and driving her mad and it's a gastrostomy that needs to COME OUT asap. It has served its long and useful purpose and we can't wait to see the back of it now. Seeing the gastric surgeon next week and hoping he will put her on a list soon soon soon to remove it.

We did some lovely things too - we saw the long-awaited Oliver! which felt very symbolic. Twelve weeks of watching Nancy be put through her paces throughout the summer months on I'd Do Anything with Rose strapped to a traction bed while chemo dripped slowly into her and there we were almost a year later like any other family actually seeing the show. I could have broken down and sobbed through the whole thing to be honest but I chose to eat chocolate instead. The children loved it and it felt like a big achievement for us all. Something that had been in our diaries that we actually got to do despite having been in Kings until the previous afternoon...

We also saw lots of family and friends and enjoyed the break from school, homework, Felix's endless round of sporting fixtures and Felix's endless play rehearsals! It's all back to normal now and everything crossed that she will get to her Make A Wish Foundation weekend away that has been nearly a year coming...

In her own words...

2009-02-22T21:57:00.003+04:00

Rose says

that oliver was great and jodie was good but not as good as jessie would have been!!! we went to see bolt today with izzy and lucy and it was funny but a bit sad. in the film this dog thought that he had super powers but he was just a dog because he was being filmed but he didn't know so thought everything he did was super and true. we saw grandma and grandpa and i dressed up as a fairy and they brought us two packets of quality streets and we've eaten them all. we saw andrew and sarah and maddie and laurie and harry and me and maddie painted our faces to be vampires and we went to hospital twice which was very boring. apart from that i had a really great half term love rose xxxxxxxxxxxxx

Clinic and beyond

2009-02-15T23:30:00.022+04:00

When friends or family ask us how a clinic has gone nothing much comes out except for a weak 'fine thanks'. Too big an experience to postage stamp and so far removed from most other people's weekday afternoons it sits there in our past and future like a sleeping dragon we're terrified of rousing. Anyway it was 'fine thanks' this time too but there's nothing routine about clinic in the cancer world - nothing predictable, nothing reassuring, just a giant leap into a dark dark world of fear and anxiety.

The mad swinging pendulum of Rose's life was summed up really by her day on Thursday - starting out like any other little girl with an innocent morning at school. Even better than a morning at school actually as it was an own-clothes morning at school! Skimming over the fact that we didn't know about this until we got there - a decade of top parenting obliterated in the realisation that the whole school is dressed up as characters from Peter Pan apart from Rose aagghh - but we salvaged it with a breakneck trip home and a Mr Ben changing room moment to become a Lost Girl. A carefree morning for her and a nail-biting agonising wait for me. Rose's leg pain had gathered pace over two weeks, waking her at night, bothering her during school, during physio until finally, reluctantly, I reported it to Stanmore.

A hastily arranged appointment plus x-ray for Thursday afternoon but our twin good luck charms of Chris Henry our clinical nurse and Mr Briggs our surgical god were going to be engaged elsewhere and we would have to see one of Mr Briggs' elves instead. We went to Stanmore's London branch in Bolsover Street where the same stomach-churning 'routine' takes place - book in, take a ticket to x-ray, wait several thousand years (with old people who have got dodgy knees), try not to scream 'my daughter's seven and she's got cancer GET OUT OF MY WAY' to the packed waiting room, luckily for all succeed at this, try not to pin radiographer to the wall and punch him repeatedly until he tells me what he can see, succeed at this too, take the ticket back, remember to smile and thank him, walk back to clinic holding slip of paper but by now almost unable to breathe or stand, and wait for the clinic door to open and the rest of our lives to play out. Anyway, half an hour later when the relief and the crying was subsiding and we had both feasted on the sight of her beautiful prosthesis on the computer with no shadows, no lumps or bumps, and we were able to croak out our questions we asked what then we were looking for in Rose's leg. Exactly this. Pain, changes of any kind. So. At least we weren't wasting their time. Give her painkillers and come back in six weeks. Another decade aged in an afternoon.

It's a bit like living in six weekly instalments - the next date goes in the diary (this time coinciding almost exactly with the next chest x-ray ) and we frenziedly start to plan the maximum amount of fun that can be fitted in before that date. Lets take her here, lets take her there, lets see so and so, lets live, live, live. Lets buy a mobile x-ray machine, image her weekly and sod the radiation... So anyway that was Thursday.

Since then it's all been fabulous again - she's been to arts and crafts at the Dulwich Picture Gallery and made Valentine hearts, she's been to a Valentine tea party with her friends from school, she's been swimming with her brother and now it's half term and there's much more fun to come. I'm still feeling the relief, still working through how this next week might have been but it hasn't, it won't and it's going to be another fantastic week with both my amazing children.

A snapshot of a week

2009-02-10T19:06:00.015+04:00

Lots of feedback to say that the easyfundraising website is fabulously easy and rewarding to use! It really is a dream way to raise money for free and encourages retailers to give to charity all at the same time - it's idiot proof and this I know because I have successfully pulled it off myself. www.easyfundraising.org.uk - it also makes you feel SO much better about spending money which has to be a good thing at the moment. Basically the economy and BCRT need you to get online and start shopping...

An unremarkable few days in my Rose bubble which is all good - more hydro, more physio, more swimming at the weekend, even more swimming yesterday, basically more hard core army fitness training. Bit of a plateau at the moment - her walking still isn't up to much outside the safety of home and even at home it often degenerates to a tired thump but at rare moments it is unmistakably walking! The physios at home and at Crystal Palace are so thrilled with her that she's finally on her way after so many frustrating and worrying months that she spends most of her sessions now basically being praised to the skies - which she rather enjoys.

Every day is still Christmas Day with her - still can't believe how fabulously normal and wonderful it is to get her up, take her to school, have her at home ALL THE TIME and then get to spend every afternoon having the best fun with her. Whether we're at Rafts n Rascals in the local pool (average client age approx 12 months) or curling up in front of a dvd or with a book (or obviously doing lots and lots of REALLY hard maths - not) it all feels like the biggest reward for a horror film of a year. School is great - neither of us taking it terribly seriously just yet academically but we'll get there! It's a fabulous toe back into the water of friendships and a healthy absorption in a child's world once more - there are occasional tears that she can't join in more stuff yet but she's getting there. I keep telling her that by the summer term she will be chasing them all on and off the pirate ship...if she does her exercises!

The house resounds for much of the afternoons with the wonderful noise of her playing and Felix is drawn like a magnet to her room when he gets in from school. Her imagination has been caught by his school play and the soundtrack from Joseph belts out on a seemingly continual loop! If the boys need a prompter in the wings when they take to the stage in March she will definitely be their girl! After dreary month after dreary month of coming home to an empty house Felix is a different child with Rose back home and they hang out together for hours - playing on the Wii fit, watching rubbish tv, busy doing nothing very much at all. If she's not belting out Lloyd Webber tracks or teaching a large class of build a bears then she's sure to be marshalling troops of Sylvanian Family animals around her bedroom or making membership cards for her new girls-only, members-only (two members so far) association The Fancy Club... It's all just a bit fabulous.

Surgical clinic looming on Thursday afternoon just to take the edge off the general sense of euphoria - deep breaths and Rescue Remedy all round. That'll do it...

Let it snow!

2009-02-04T15:03:00.017+04:00

Huge excitement this week about the snow! First time in the children's living memory that the schools were shut because of bad weather - slightly mixed reactions in our household... after Simon had shovelled the car out and driven off like a lone pioneer and Felix had ripped his uniform off and dug out his ski gear there was a realisation from Rose that school - the highlight of her day - wasn't going to happen! We did get her togged up in boots and coat and got her outside finally to have a play and throw a few snowballs at me and the dog but it wasn't quite the same as Felix who ran in and out, built snowmen, chucked snowballs at the neighbours and generally had a high old time. There was a bit of movie and popcorn action with a sofa-full of boys which she loved and having Felix at home under any circumstances is A Good Thing as far as she's concerned so it was all lovely lovely and SO COSY - I was in heaven but all good things come to an end and Felix was despatched back to a classroom on Wednesday morning. Pavements still looked treacherous for anyone on crutches so I made the unpopular decision to stay at home for one more day even though Sydenham was open - the pressure was on to compete with Yr 2 for a good time and I don't know how I did but I gave it my best shot. We made cookies, had manicures and pedicures, arts and crafted our way through the day and - even better - physio was cancelled because of the bad weather... There were no complaints but she was very happy when the uniform appeared this morning and off we went.

Rose's community team were coming for a meeting at school this morning with Rose's teacher, headmistress, PE teacher, school nurse, health and safety officer etc etc to have a full review of where we're at and where we're aiming for. Good outcome I think although exhausting trying to constantly push for safety, inclusion, supervision etc without frightening them all off with too many facts. In a bid to leave Rose there for four mornings unsupervised - by me - they are going to ask a rota of teaching assistants to (volunteer to) run a mini physio session each break time for ten or fifteen minutes just to keep Rose from stiffening up too much each morning. We'll see - if there's a deafening silence in the staff meeting I guess it might bounce back to me but we have thrown ourselves on their goodwill and discretion and are hoping that she won't need this sort of support long term and that by the summer term she is able to go out to the playground with her friends. The playground is one of my favourite fantasies and we are all working so hard to get her back there... We have decided to start the ball rolling in the long daunting process of getting Rose statemented in case things don't work out quite the way we want them to and school seem supportive of this. I have no idea what I'm doing and so far have only got as far as requesting the forms from Southwark but I guess it's just the next step on the learning curve!

So it was a brief one-morning week for Rose at school and tomorrow is her full on trainers, whistle and swimming cossie day in hydro and physio. A whole week with no hospitals - bring it on!

Fundraising postscript!

An easy, easy way to raise money for a given charity (BCRT obviously in your case!) has come to my attention this week and it's (almost) effortless and involves NO (additional) expense to you...as we are all hardened internet shoppers this could appeal so please read on. The next time you are planning a big flick and click afternoon with your favourite retailer (Amazon, Boden, Tesco, hundreds of others) please please register first at www.easyfundraising.org.uk and enter your chosen retail site via easyfundraising. A donation is then made to the charity of your choice - all you have to do is nominate your charity, navigate to your chosen site and shop away... If that is just TOO EASY and doesn't make you feel quite GENEROUS enough you'll be thrilled to hear that the next Rose Allocca fundraiser is underway - a team of 12 are running the Reading Half Marathon on 29th March and if your coffers are overflowing and you just can't decide to do with all your spare cash please feel free to support them at www.justgiving.com/rosesrunners!

It's all going too well...

2009-02-01T22:43:00.018+04:00

More highs and lows in the last few days but that's just the way it will be and doesn't mean we celebrate the highs any less! Rose had a very short week at school last week but she loved every minute of it as always and genuinely seems to be catching up - I can't believe how much she has missed and how little difference it seems to be making but I think that is just the beauty of being so little. Having experienced 'hospital school' at close quarters for so long I realise how little of a long school day is actually spent in maths and english and how much of it is spent just having a fabulous time with your friends. Her reading is fine, there are big gaps in her maths and her writing is very, very slow but she's getting there and is loving the chance to be a regular little schoolgirl with her pencil case and her snack box like all her friends! So when I told her that was that for the week on Wednesday lunchtime she wasn't very impressed...

I squeezed in a couple more emergency physio sessions before the trip to Stanmore in the desperate hope of getting her bent leg down to at least 5 degrees and to get a more confident walk going and the reaction was as hoped a really positive one. Since she was last there in the middle of December she has come on in leaps and bounds - although her walking is incredibly slow and she has a huge, ungainly limp she is really improving. She doesn't use her crutches at all at home any more and goes up and downstairs confidently by herself - I am in fact always about six inches away but I don't really need to be and falling over (on carpet) is getting more frequent and therefore less scary. A big fall on the stone floor on to her knee is what I am hell bent on avoiding so the responsibility still feels pretty heavy but she is slowly getting better at regaining her balance when she wobbles. So when she walked unaided into the gym at Stanmore on Thursday morning they all stood and cheered and praised and - even under closer scrutiny from Tracy who has worked long and hard with Rose's walking over the months - the reaction was still good. A long, long way to go but she's on the way! She may still need to be manipulated under anaesthetic to get that precious last five degrees down and her bend has also lost a bit and is now less than 90 degrees but that will be a surgical decision when we see the team in the next couple of weeks. And although I think it involves grown men sitting on her leg in theatre and is probably not the most comfortable thing for a couple of days afterwards I don't think it would be the worst thing that Rose has gone through by a mile and may actually really help her. So she was prodded and measured and put through all her paces, declared a thoroughly fabulous seven year old on the mend and despatched home again. Phew. All that and the obligatory drive-through McDonalds reward and she was safely back in her own home with another hospital visit ticked off. Cue very large glass of wine and a few tears of relief and achievement...

Fridays we never manage school as the whole hydro/physio thing seems to run from about 9.15 to after 3 including the travelling/changing/recharging so that is a very full-on day and absolutely exhausting. And that's just for me... it really is the most tiring thing and I know it's not just me as by the time the physios get from the pool back to our house they are shattered too! I think it's a combination of the air and water temperature being just off boiling point and keeping the whole atmosphere jolly and active for a whole hour but by lunchtime I have had just about had it and there's still an afternoon of land physio to go - by tea time Rose is absolutely ghastly and I can't get her asleep fast enough. Another five days of continuous Rose supervision down. More wine.

Friday nights bring the seventh cavalry riding over the brow of the hill and the moral and physical support of The Other Parent - generally by then I am too worried/relieved/tired/euphoric/anxious (any or all combination) to do much more than go to bed but it's another landmark in our crazy week and a very very welcome one. To stand a little way back for a few hours over the weekend is keeping my head above water and it's very amusing to see Simon and Rose resume the timeworn script for their physio battles just as she and I do all week. We're even trying to resume some sort of tentative social life and have seen family friends for the last couple of Saturday evenings which is all progress and is starting to narrow the gigantic gulf between us and EVERYBODY ELSE. Very, very occasionally for a split second and if the glass of wine is large enough I can almost stop thinking about Rose whilst simultaneously trying to be sparky and sparkly and it's essential distraction to stop Simon and I staring blankly into her future. And that I suppose is all that lies between us and perfect peace of mind - this weekend she has complained intermittently again of leg pain and we just don't know what this means or how seriously we should take it. On the one hand we've had it drummed into us that recurrence is most likely at the original site, most likely in her first year of remission, that it won't be picked up on a scan because before then she will report pain and stiffness and on the other we are trying to rationalise, to be calm, she's doing lots more than she was a few weeks ago and her leg is reacting etc etc. Round we go on our merrygoround of fear - driving each other slowly but surely mad with worry. And it's Sunday night and the cavalry is packing his bags and planning his exit route and it's all just a little bit scary.

From strength to strength

2009-01-27T00:58:00.020+04:00

She's doing so well! Tentative hopping slowly turning into something definitely approaching walking even though it can only be practised on carpet and closely supervised so almost all of the day Rose is still careering around on her crutches but it's getting more confident every day. In physio she will stand on her right leg supporting herself with one hand and count to ten - this is absolutely HUGE and means that although she's putting as much weight as she can through one small hand she is definitely weight bearing through the leg too. The more she does this the straighter the leg will get, the straighter the leg gets the easier it will be to walk etc etc.

It's all going in the right direction and she is moving so much more independently around the house to get to whatever she wants - it may not be pretty or particularly dignified but she's moving! I am so proud of her - it's taken months and months of really hard work and she's got months and months more to come but she's on the way. Physio is not fun - at worst it hurts and at best it's really, really boring! This month's goals are - hopping on her right leg on the mini trampoline, getting up and downstairs with no adult supervision and no crutches, standing on her right leg to count to 20 (nearly there!) and stepping through with her left leg to make a proper walking pattern rather than such a big stagger. Each month they look unachievable but she's ticked off all last month's goals so no reason why she won't just keep on going now. Especially not with the heavy incentive of a long shopping list from Build a Bear, American Girl, Sylvanian Families... I am learning the hard way how expensive this is getting. I told her yesterday that if she straightened her leg enough to hold her toes for ten I would give her a five pound note - confident that the day before she'd been about three inches off. She did it straightaway...

Keeping Rose moving when she's not on her bottom in a classroom is my whole focus now - so far this week we have swum after morning school on Monday and hired giant tricyles in the park on Tuesday afternoon. Retraining Rose away from every waking minute being spent flat on her back in front of a TV screen is a long process - there are months of hospital life to unpick in her brain but she is slowly becoming an active little girl again. Kicking, splashing, cycling, walking, crawling, standing up in the kitchen, I don't care what she's doing but she has to be doing something! And the more she does the more she is rediscovering the thrill of just being busy doing stuff.

As well as celebrating her fabulous Sinead O'Connor hairstyle (definitely almost an inch long now) with the first hair wash (whole family in the bathroom with camera - how sad are we) we are also marvelling at the return of her gorgeous eyelashes and eyebrows and the beginnings of a tiny bit of weight gain. Rose is coming back. She's loving her trips to school and secretly so am I - I have really just swapped one institution for another and am now as embroiled in hymn practice, wet break and the class gossip as once I was in ward life. Leaving her there will be hard but I know I have to start soon as the realisation is slowly dawning that I am there more for me than for her. She's fine and in reality each time she has fallen over I have been about six inches away from her and still not managed to stop it happening. I am about as much use to her in the corridor as I am at home and I am only ever going to need time to change into my Superman outfit and fly up the hill to her school to be there when suddenly it's not all going okay. I need to relax my grip on the umbilical cord just a bit - aaaggghhh I really, really don't want to. Her community physio team are coming to school next week for a meeting to discuss how to facilitate Rose's time at school better and who will fill the gaps I am filling - subtext how to wean Rose's mother off Rose...

So day to day Rose is loving her life and the little daily picture is rosy, rosy, rosy. The big picture is the big unknown and the reality of that reduces me to tears at least once a day when caught off guard - fear, leg pain, looking too far ahead or too far back can all drain my happiness in a moment. Suddenly the enormity of the past, present and future will rear up in the middle of all the benign fabulousness just to make sure I never take a single second with Rose for granted. And I never ever will.

Home and hospital

2009-01-23T23:37:00.021+04:00

After all the excitement of last weekend a quiet week was called for but it didn't happen...two more birthdays, two more days in hospital, lots more physio and school, and we are all tonight limping to the end of another exhausting five days. Working backwards - today was a full on day at the Marsden seeing oncologist, dietitian, and having the dreaded eight weekly chest x-ray. All fine but the nervous tension and exhaustion got to us all and by the time Rose had waited hours in clinic she had made herself ill with fright and spent the whole consultation on my lap feeling sick with her head buried in my neck - it's harder and harder to go back to the Marsden the longer she spends at home and I think she was genuinely scared that she could be readmitted at any moment.

We wandered through the ward saying hello to the lovely nurses and play specialists who were so key to Rose's life for so long and feeling sick to our shoes to be back - I stood in the doorway of Room 8 where we spent so many back-to-back weeks towards the end and replayed the whole thing in my mind. Awful. Everyone was delighted to see Rose and she found time to make a hat in the playroom and colour endless pictures while we waited to find out which way the rest of our day and lives were turning out this time - I honestly don't think we're ever going to get used to this and we both aged another decade in an afternoon but once the magic words 'chest is clear' were said suddenly the sun came out over Sutton and all was smiles again. We covered lots of other stuff too - the big weigh-in was predictably disappointing and there's no immediate chance of getting the gastrostomy out but we have a new plan to make the overnight feed shorter and try to make her wake up hungry so fingers crossed. A stable 25 kilos with no night feeds is the target to meet before the tube can come out - long way to go! We talked about Rose's immunity, exposure to infection at school, having her vaccinations repeated in a few months time and the risks of infection to her leg. All very serious and grown up but with a clear chest x-ray in the bag no big banana.

Kathy was less impressed with Rose's walking and thinks she may still have to have her leg forcibly straightened under general anaesthetic back at Stanmore to help her weight bear. Ten days after our big moment with no crutches it's all still very tentative, more hopping than walking and her leg is firmly stuck bent at 15 degrees which makes it impossible for her to take proper steps. SO FRUSTRATING!!!!!!!!!!! Back to Stanmore next week for another assessment and to hear what the experts think - meanwhile we plug away with endless rounds of exercises to try to straighten it and the usual nagging her to put weight down, straighten her foot, bend and straighten the knee. God. Poor child.

We'd already had a hospital day earlier in the week back at the Brompton for a repeat heart echo but this went really smoothly - the damage to her heart function that she sustained from the chemo and that we were told was irreparable has mended itself and the echo was normal. I'll always worry that she should have and maybe could have had all the final doses of chemo, that her heart could have taken it, but hindsight is a wonderful thing etc and who knows what would have happened if they'd ploughed on and ignored the echo. All academic now anyway as the time for chemo has hopefully been and gone...Hospital trips however well they turn out are stressful all round and a horrible juxtaposition from the light normality of mornings at school and making birthday cards for Felix and Simon. Rose doesn't really take any of it in her stride although she gives it a good go and she is the bravest child in the world but she does get worried, her life back at home is more precious to her than anyone could possibly understand and she is uneasy at the prospect of hospital visits. They are such a part of her future that I just hope it gets easier. Every week something new falls through the door with her name all over it - she gets more post than all of us!

The rest of her week was more usual - I won't say normal! Lots more physio with varying degrees of success, hydro, swimming, seeing friends, trying to slowly catch up with schoolwork and reading and a couple of dawn raids for birthday present opening for the boys. I'm still with her at school - which probably needs sorting out before the staff (and Rose) get too dependent on me but to be honest whatever works for Rose works for me just now. She finds the whole experience exhausting and draining enough just struggling to keep up with the work without the additional anxiety of what happens when she needs to go to the loo or change rooms and until they can reliably facilitate this I am prepared to stay. Separation anxiety? Just a bit.

So on we go - home or hospital it's one day at a time and enjoying every single minute with Rose...apart from the physio of course...

They jumped for Rose

2009-01-18T23:32:00.009+04:00

They did it! Both fabulous, fearless (not so fearless at 12,000 feet - I am renting out the DVD for priceless glimpses of panic-stricken faces!) sky divers are tonight back on solid ground, no bones broken, no life insurance claims to be made... I have never seen such happy, relieved chaps striding off the landing strip with it all safely behind them!

Despite last night's awful gales and a familiar feeling that rain could stop play once again the boys set off before dawn with Simon at the wheel and the car apparently getting quieter and quieter as they got nearer and nearer Headcorn - nerves definitely setting in but the weather got better and better as it got light and by the time they had registered and settled in there was no doubt the jump was on. Gulp.

With a car full of friends Rose and I followed on a bit later but as we got nearer and with Simon in constant touch it became a race between car and plane - without having to run through their safety briefing again the boys were lined up for the first jump and Ally broke land speed records through country villages (our lives so much more in danger than theirs at this point). There was a definite risk that the event's main celebrity would miss the two dots and a thud but she didn't - we made it in time to watch them waft gently over the Kent countryside and land safely at Headcorn. Very emotional - with friends and family cheering them in and lots of pix and hugging all round.

Back in April last year in our very early, very dark days when my phone rang on the ward at UCH and Calvin put this whole crazy plan to us we barely knew these lovely men and nine months later they've done it and we've raised a fortune for a charity that is now a part of our lives forever. We've dragged all our friends and family into it one way or another but Calvin and Tayo were the stars of the show today. There is literally no way to thank them for what they have done but I hope the memories they will have of a sunny skydive over the beautiful English countryside with Rose waiting at the end to meet them are good ones and will make up for the ten minute climb in the plane - which didn't sound so fun! Thanks to everyone who came today, to everyone who has supported them this year and helped them raise the most amazing amount of money but mostly to them - thank you boys from us all.

She's done it!

2009-01-15T20:08:00.021+04:00

Rose has taken her first steps since 7th April with NO CRUTCHES!!!! Nine months and one week off her legs, three months in traction, six months since surgery, several lifetimes of worry and years since hope got up and left the building she has finally, finally done it. No awards for style or balance - it's a great big stagger with the biggest limp in the world and we only seem able to repeat it at selected moments - but who cares. Next week the running track...

And after all the good PR I've given him it wasn't even with Rob but with Amy the community physio who brings fun and games right to our door playing right here in her own home. Without realising what she was doing she bent to pick up a hoop, took a tiny step, and just kept going then 'Mum, Muuuuuum, look at this' ... floods of tears all round (including Amy), making her repeat it over and over and over in case we were dreaming. Felix and I videod her, left messages for Daddy, praised and praised and praised and then collapsed in a heap hardly believing what had happened -put her to bed and sat watching the video clip over and over again!

A couple of days in we have calmed down a bit and Rose has gone backwards a bit but it might all start to fall into place now - I texted Stanmore immediately who that day had called to book her in again to see their child psychology team and hope now that we can shelve that plan. She has got a million miles to go, can stagger in a lopsided drunken way about three or four steps and is still managing to do it -quite impressively - without putting too much weight through her leg but no crutches surely qualifies her for a child psychology stand down. And this morning we have had our first hour long hydro session - loads of fun and splashing about and I've picked up lots of stuff I can do with her in the pool myself so boot camp is shifting up a gear in the Allocca house. If she's not sleeping or in a classroom she's going to be swimming or walking! Practising it at school or anywhere without an adult poised to catch her has been banned by the physios and she will be using her crutches for months to come but it feels like a ten ton weight is slightly lifting off my shoulders and Rose is absolutely thrilled with herself. She wants to go to school full time after half term and this is starting now to look like it might actually be possible - and if she can start to get safely around the building using her crutches I can start to leave her there...trying to keep the lid on my excitement as the possibilities that are opening up for us are breathtaking and I don't want to tempt fate but things are LOOKING GOOD. Suddenly my head is filled with fantasies of holidays and trips and everyday schoolgirl life and my heart is singing with all the things that are out there just waiting for Rose to come and get them.

STOP PRESS STOP PRESS STOP PRESS STOP PRESS STOP PRESS STOP PRESS

Calvin and Tayo's long anticipated (mainly by them who are now back in the grip of skydive stagefright) jump is back on for this Sunday morning and they are soooo close to reaching their target (I promise it isn't me that keeps increasing it!) so if you want to help them get there you can still support them at www.justgiving.com/roseallocca

Hopefully pictures of them safely landed and no bones broken to follow! Happy jumping and all our love to you both - AGAIN! Just make sure you do it this time...

More milestones

2009-01-13T20:02:00.024+04:00

Some truly stop-you-in-your-tracks moments in the last few days which are only remarkable in how totally unremarkable they are - here are a few of my best ones. Rose, Felix, Simon and I in the kitchen on Monday morning - both children in uniform, Simon in a suit, me packing bookbags, EVERYBODY arguing. Rose walking downstairs using the bannister and no crutches. Slowly, unsteadily, bent in half, clinging to the bannister for dear life but doing it! Going swimming with both children on Sunday afternoon like any other family - bit of a palaver but basically just great fun. And there are more snapshots of normality sprinkled through the day that are getting more and more frequent and fabulous. Rose eating a Sunday roast - Rose eating anything actually is still cause for celebration all round but it's definitely beginning. Counting down (or up) the kilos until her stomach feeding tube can come out - very unreliable and she can still go the whole day entirely nil by mouth but after nearly a year of eating barely anything she is having lightbulb moments of remembering that food can be a pleasure - even when I've cooked it - and suddenly announcing that she is 'starving'. Decanting 500ml of Paedisure Plus every night and attaching it to a feeding tube in her stomach is not eating and I can't wait to get that last foreign body (barring the big one holding her leg together) out of her and take another step nearer normal.

Any kind of exercise or physio is still the greatest drag on earth and all she really wants is to be left in peace with her friends at school, safely on her bottom, so our relationship is doomed. Like the proverbial bad penny I keep walking through the classroom door and breaking up all her fun with physio and hydro appointments - she has just got to trust me that in the big scheme of things double art fades into insignificance compared to being a biped and that if she ever wants to get on that pirate ship she's got to do it my way. Life is pared down to home, physio and school for both of us by day and by night my dreams have been visited by bizarre x-ray versions of Rose running in the playground and sleeptalking mantras of physio instructions 'weight down, Rose, step it through' - so there's only Rose and no perspective but it's a million miles from the hell we've left behind us. She is a continual reminder of how adaptable we all are really - the daily grind of the hickman line, canulas, chemo drips, infections and fevers belongs to her past and the present is what reading level she is on, who she will choose to stay in at break time with her and how she will get out of doing her exercises. So that one has stayed with us...

New in the cast list of Rose's theatre is Rob the physio who in motivational terms alone is priceless and we need to bottle him and take him home with us - think young, lean, blond Australian brimming over with energy and enthusiasm - 'Rose you are rocking it out today' - takes no prisoners, makes her cry every time but despite this she is putty in his hands and has taken her first few tentative steps with him. He crawls along the floor gripping her knee in both his hands to give support and cheering her on - there's no time for thinking about it before she knows what she's doing she's putting weight down and 'rocking it out'... we're both captivated and come out on a physio high. Even when she's done almost nothing at all and has no intention of repeating what little she has done she tells everyone with a huge smile 'I did really well at physio today' - if we can turn physio into a leisure activity peopled with handsome young antipodeans the future could be looking a lot brighter for us both...

Actual tangible progress with walking is negligible so far but there is a bubble of optimisim in us both - even if rarely at the same time - and sometimes it really feels that this could be the end of one awful year and the beginning of a rosy future for her. Our expectations are so much lower than they were in June when she was operated on and we naively thought that after a couple of weeks she would start to hobble about - one by one I've knocked goals off a mental list not out of defeatism but out of a slowly dawning realisation that Rose will never get back to where she was physically. Not aiming for any kind of perfect now - just independence and a future. So quite a lot actually. She's got more hospital stuff looming in the next week or so which I wish I could protect us both from but I can't and she and I are going to have to get used to veering from show-and-tell to chest x rays in the same day. Rose however is guaranteed to take it all in her stride!

School's back!

2009-01-09T00:00:00.018+04:00

We've nearly done a week of normal and all still hanging in there...the family scattered in three directions on Monday morning with Simon back at work, Felix off to stay with friends and Rose and I off to...drumroll...yes...that would be physio... Having hardly breathed for the first three days today started to seem a little less like Rose immersion therapy and a little more like life. The intensity is, well, intense and is going to take a bit of getting used to - I am living in a Rose sized vacuum mainly watching her little pink trainers take one tentative step after another and looking wildly around me for frayed corners of carpets, icy patches, swarms of small children and wishing I could roll her head to toe in bubble wrap. What would be odd about going to school like that? Sounds really sensible to me.

Rose was very subdued without the boys and maintaining an artificially jolly atmosphere took most of the first day but then it was time for school. Promoted to the corridor for most of the time - although I have made guest appearances at break time and hymn practice so far - it is both wonderful and painful for me and pretty much just wonderful for Rose to be there. Co-operating with the staff and highly motivated to protect Rose from falling wherever possible I am there in the role of supervising manouevres round the school, indoor break and toilet patrol - it is a pretty unglamourous role and I hope it won't be for too long! Rose is gettingly worryingly used to it already and showing no signs of despatching me yet - it's a major deal just for her to be there and no one really gets it but it will get easier I'm sure. She hasn't sprained her ankle or broken her leg and she's not just another child on crutches - to see her settled in a classroom and not a hospital bed after so many, many months is very emotional and wonderful but the little girl that ran out of school last March is gone for good and in her place is a young lady with a very, very old head on her shoulders. She has seen and experienced things that none of her friends or teachers have experienced, is familiar with language no child should know, nothing is over for her and I think she will find it hard to settle straight back into the innocence of her group. She certainly has a moral superiority over people ten times her age that she's never asked for or wanted and it's going to be hard to revert to being told off for not going to the loo in break or for talking in class! Just another learning curve and Rose is an expert at those.

So keeping Rose safe is now a part time job at school whilst juggling physio, hydro, and endless thousand repetitions of exercises. Every trip up or downstairs takes ten minutes and like a mini version of a cantankerous old lady she shouts and summons me from the other end of the house whenever she can't quite reach the remote control, the toy she wants, needs the loo (again), a drink, a snack aaagggghhhh...I am finding reserves of patience I never knew I had and holding on tight to them! I have NEVER been so pleased to see Simon as I've been each night this week and nor has Rose - the little girl who didn't turn a hair before if he was abroad for days at a time has been replaced with a real Daddy's girl who lights up when he walks in at night and cries when he leaves in the morning. And for Simon - he has walked back this week into a very different and subdued world from the one he left behind at work and needs to reabsorb himself back into it - without worrying too much every day about Rose and how she is getting on. So it's a shaky start but it's a start and we are all well on our way back to the outside world...

Happy new year

2009-01-04T01:14:00.012+04:00

Well - it's all over! There's nowhere left to hide, all the celebrations are over, nothing left to plan except the rest of our lives and normal life is coming back...

New year's eve was wonderful - we toasted the end of the worst year of our lives (or worst year SO FAR, as Homer Simpson would say) with the kids as planned in front of the fire with a bit of 007 escapism and a lot of champagne. All asleep hours before the new year dawned - fabulous. Way too soon for attempts at social interaction beyond small safe gatherings with family and good friends and for the last week we have holed up in front of the fire playing games, watching a lot of DVDs and eating almost all the time (apart from Rose - if only). Emotional convalescence all round.

Back into party mode today for south-east London's most celebrated seven year old! Eighteen little princesses - and one prince - celebrated with us with a suitably sedentary bit of pottery painting and a chocolate fountain. Seven year old heaven -and another truck load of presents to shoe horn into Rose's bedroom! Back home tonight and with the frenzy of unwrapping over for the third time in a week even Rose is overwhelmed by the focus and is looking forward now to moving on and to GOING BACK TO SCHOOL! This is definitely the next and exciting thing on Rose's horizon although it will be more short, supervised trips to start with and broken up by lots and lots and lots of physio, hydro etc. With Christmas and birthday behind her it's back to boot camp and the ceasefire is most definitely over - with more falls and near-falls throughout Christmas the need to get her weight-bearing is as urgent as ever. Without standing on her right leg she will never be safe and shadowing her for her every waking minute is going to get harder and harder - we have started the same old conversations with her that we have been having for six months but with the same stalemate. She can't or won't put weight through the leg and our brief moment of optimisim in early December hasn't been repeated - her leg is back to being permanently bent at an angle of about 10 to 15 degrees which makes it almost impossible to use. We are stuck in a vicious circle that only Rose can break us out of and frustration levels are rising once again.

It's not where we planned to be by January and the continual responsibility of keeping Rose safe on her crutches is overwhelming - her school are understandably nervous too of having her back and although she needs independence from me as much as I need it from her I can't see how we're ever going to get it. Perhaps the peer pressure of her friends will provide the eureka moment we are longing for - after that we are totally out of ideas! So Rose is going to start to be a regular(ish) seven year old and Simon is going back to work full time on Monday. This is huge for all of us and brings very mixed feelings and fears - optimism that we are all on our way back to where we were before and fear just in case we're not. Of all the dads in all the world Rose chose hers very wisely and we are going to miss him terribly - ironically Simon and I have never spent so much time apart up until this last Christmas fortnight but we have tag-parented our way through the last nine months and kept all our heads just about above water. More than anything I want to surprise him every day with the progress Rose is making and not to let him down - of all the (many and wornout) physios Rose has worked her way through this year Simon has been the best and most patient and has remained consistently optimistic and positive on our darkest days. New year's resolution - Rose WILL start to walk, she will start to eat, stay in remission, and all will go well for the Alloccas in 2009!

Now we are seven...

2008-12-30T19:30:00.012+04:00

Hot on the heels of all the fun and festivities of Christmas came Rose's birthday on the 27th so we are officially partied out - the house is a small concession of Hamleys, we've done more presents, cake, the annual birthday trip to the pantomime and Simon and I are lying at the bottom of a big pile of discarded wrapping paper begging for mercy! It's all been just fantastic albeit in a disabled-access-to-everything kind of way with massive attention paid to parking, seating and exit points and Simon and I both trying hard to maintain the Christmas amnesty on physio and exercises - and succeeding most of the time!

Consequently Rose has done very little except open presents for four or five days remaining firmly on her bottom and maintaining her rights to refuse food, drink or unnecessary movement of any kind! She has been spoiled rotten with continual present drops, a stretch limo to the pantomime, her birthday read out on stage and her party still to come. She is well and truly seven with bells on and along with all the piles and piles of presents come all our hopes for what this next year will bring her - huge things for Rose, everyday things for other seven year olds. All our hopes are pinned on you sweetheart - take that first step and the rest will all fall into place for you.

We longed for the Christmas period at home and we've had it - and I am pathetically grateful for that mainly on behalf of the children but for us the special significance of Christmas and birthdays has been painful as well as fun and we are secretly glad it's coming to an end. It has been just wonderful to be at home together and for Simon and I to feast on the children all day long but looking forward will be easier when we are not playing 'this time last year' constantly in our heads and intruding on each other's pain a hundred times a day. We've still got to get to the other side of New Year's Eve with all its blank-page-scariness and yesterdays and tomorrows but nothing more stressful is planned than a big fat bottle of champagne and a Bond film in front of the fire with the kids!

I am drowning in thank yous unsaid and unwritten not just for all the presents for Princess Pink in the last week but for all the fundraising, the childcare for Felix, the food and wine drops, the visits to hospitals day and evenings, for wading through these self-obsessed reams to keep in touch and for forgiving us for absolutely never asking how any of you are. We have been unbelievably selfish and high maintenance friends and could not have done it without all the help we've had - please don't stop! We're going to have a stab at normal life - God knows how that's going to work out and we're all terrified but if all Rose needs is a tidal wave of our love and hopes to send her flying into next year she's going to be fine. Happy new year amazing Rose - we're all right behind you sweetheart.

Happy Christmas!

2008-12-25T16:47:00.002+04:00

I am writing this very quickly while anxiously opening and closing the oven a lot - I know it's Christmas because even just for the four of us we seem to be at least one oven short to squeeze the ridiculous amount of food we have got in...for the two of us and effectively one child (Rose still nil by mouth no idea why) so anticipating an afternoon of groaning and holding our stomachs... Which is all EXACTLY AS IT SHOULD BE - we're here, we've made it, we're not in hospital! In the end we didn't even have the stomach to phone Stanmore - knowing that once we had made the call they would be duty bound to have a look at her so we have opted for painkillers and reassurance and staying cosy at home. The pain and bruising has settled down and although she has lost a bit of range of movement we are hoping that will come back within a week or so - and we can always get it x rayed next week.

We have had the week we prayed for - friends and family coming to us and us to them and although last night Simon and I both wobbled badly as we stuffed stockings and left out the mince pies for Santa today we are all euphorically, ecstatically happy. Too painful to look back, too scary to look forward we struggled to stay in the moment but today we are back on track - Simon is in his rightful place on Christmas Day with a glass of champagne in one hand and a screwdriver and batteries in the other, Felix running around from room to room playing with everything as he unwraps it, and Rose is just happy for the ceasefire in physio and hasn't moved since six o clock this morning. Heightened emotions all round - so grateful to be here, to all be together and nothing can take it away. We've spoken to all the family and lots of friends but the door is locked, the drawbridge up and we are selfishly revelling in being just the four of us! Happy Christmas to everyone we know and love - hope Santa brings you everything you've ever wanted!

The new normal is very fragile...

2008-12-21T22:01:00.002+04:00

A very tenuous grip on normality this weekend - Rose had a HUGE fall on our stone kitchen floor yesterday morning. One second she was happily making brownies and singing Christmas songs balanced on one leg and one crutch and the next she had slipped and was down hard on her right side taking all her weight where her prosthesis meets the top of her femur. Ohmygod. All the ensuing screaming and panic took us all straight back to when she first broke her leg through the tumour and within seconds we were almost all in tears - she is very, very frightened even a day later and convinced that she has broken it again. She hasn't of course but she may have dislodged the prosthesis, she is in loads of pain and without an x-ray we have no idea what she has or hasn't done. Aaaggghhh - we thought we'd seen the last of Stanmore until after Christmas but this may not be the case. Torn all weekend betweeen wanting to put her straight in the car and go up and hoping that perhaps it will just go away. Short term sticking plaster has been plenty of nurofen, codeine and reassurance but if it doesn't settle we probably will have to go back. Realising that life is going to be shuttling between home and Stanmore and home and the Marsden and that the new normal is taking sudden emergencies in our stride. Also realising that I am absolutely crap at this.

All I want for Christmas is two weeks at home without a crisis - I thought we were on the home run having escaped the Marsden on Friday after a straightforward day. Nothing untoward - just an audiology test, clinic with our oncologist, the big weigh-in (24.6 kilos yay) - and the fabulous novelty of going to hospital and LEAVING again. We walked from daycare to the ward to see Rose's old friends - bizarre to realise it all still goes on without us, that other children are still mid-treatment, that they will be in-patients next week and that we were so lucky to have got done and finished and out by Christmas. So please please please Rose throw us all a break and stay out of hospital till January...

The mood if not the pain was lightened today anyway by a lovely Christmas visit to London from our Devon cousins. We mugged them for our presents and drank lots of champagne just in case we don't get another chance! No idea what to do tomorrow yet - Rose is asking for Stanmore because she's frightened and wants reassurance, I'm a bit the same, Felix is desperate not to go in case Christmas disappears from under our noses and Simon is not committing until the morning. So at least we're all agreed on a plan of action.

The new normal

2008-12-16T20:00:00.019+04:00

I could definitely definitely get used to this! Each day for the last three or four days has been totally normal and therefore completely extraordinary. Waking up and going to bed night after night all under the same roof has been fabulous and something I swear never to take for granted again but I am sure I will. Each precious healing day takes us a little bit further away from the 24/7 awfulness of Rose's year and actually we marvel a little bit more each day about how awful it really was. The stuff that she and we were dealing with every day seems even more appalling from the safety of home than it did at the time and Rose is definitely slowly processing her experiences with us in a way she didn't while she was going through them. She has talked more about her time in hospital, the surgery, the threat to her leg than she has done all year and I'm hoping this is all A Good Thing and helping her get it all out.

God knows we are not properly qualified in any way to help Rose come to terms with her new life and we tiptoe carefully through the daily minefields that crop up - all as raw and sensitive as each other. From the shop assistant who asks what Rose 'has done to herself' or innocently mistakes her for a boy, to Rose sorting carefully through her cupboards and putting her ballet uniform and leotard to one side there is pain everywhere that has to be smoothed over for her. Lots of reassurances, no promises. And for one another all is still exposed nerve endings and super sensitivity - our love for her and protectiveness knows no boundaries any more and the need to fight her every battle is overwhelming. They used to say to us in hospital that post-chemo parents suffer terrible separation anxiety from their children - can't quite imagine being separated from her yet but it's definitely out there. I don't think she's going to want me going to school with her when she's ten but certainly for the next few weeks I am going to be the uninvited guest at the back of the classroom, the moving bush in the car park...

Every day still fighting the urge to start each sentence with 'If only she was walking...' - but this really is now the hardest part. Perhaps it always has been - we have brought a disabled child home and are still adjusting to our shrunken horizons. Everyday trips and treats have become logistical nightmares and we generally don't seem to realise our limitations until too late. Life is pretty much just about parking these days! Of course the jubilant moment of weight bearing last week hasn't been repeated yet (think she gave herself quite a scare and has no intention of rushing anything!) but we live in hope and are limping from physio to physio in the hope of a breakthrough... Had a long chat with Tracy her physio at Stanmore this morning who is convinced that more admissions up there is not the way forward at the moment for Rose. We have tried all standing over her telling her to put her weight down and it's not happening - definitely time for new tactics. Tracy is convinced that school and home are the way forward for now and I am more than happy to give that a go. Anything that means all being at home works for me.

But apart from physio she has done some more 'normal' stuff which is all fab - on Friday we took her to the UCH Christmas party. A great opportunity to see her peers from pre-surgery chemo and how they are all getting on (better than her, that's for sure!) and it was a bit of closure for Rose on her UCH days. We had under-estimated for us all what a shock it would be to move but months in Rose is finally happy and settled with her new surroundings and it was safe to take her back to UCH without worrying she would be unsettled all over again. She definitely wasn't but she was really pleased to see her old friends and more importantly Father Christmas. Apart from getting her crutch caught in a paper hat and falling on the way out it was a success! And on Saturday we had been given charity tickets from the Marsden to see Peter Pan - the kids loved it and between worrying about parking and access to the toilets Simon and I enjoyed it too. The children watched the pantomime, we watched the children - living in the moment our new way of life.

So we're adjusting - and hoping hoping hoping nothing stops us being home for Christmas. There is more Marsden at the end of this week to see her oncologist and to have some more baseline post-chemo tests but we will be really unlucky now not to be here next week. With Rose's history of infections we are going from day to day and we have had a couple of scares even this week - she still has a stomach feeding tube in and this became red and inflamed and sore at the beginning of the week. Aaaagghh here we go, we thought, the site of the next possible infection which would take us back in but a couple of days have passed and it has died down a bit. Who knows - if we have learned anything this year it's that we can't plan beyond today. And today is the new normal - a couple of hours at school this morning while Simon and I met with her headmistress to discuss Rose's future and everything that needs laying in place for her to have a slow re-entry into her class and physio this afternoon. We are loving the new normal - and long long long may it last.

Those boots are made for walking...

2008-12-11T20:03:00.012+04:00

Three more days and two of them back in hospitals - so we are taking the being at home thing slowly! The pain in Rose's leg kept niggling away and there were more tears on Tuesday morning so, knowing that we would be imagining the worst right through Christmas, we rang Stanmore again and they told us to bring her up on Wednesday. The Marsden was already scheduled in for Tuesday with a kidney scan, trip to the physio etc and Rose had a fabulous day down there - still more like home than home she was absolutely thrilled to be back, was welcomed by all her friends on the ward and in the school, her favourite nurses and teachers, her favourite physio, inspected all the latest Christmas decorations, caught up with all the gossip and had a top time. She hardly even noticed the canula, the radioactive injection, the hourly bloods...

On Wednesday we managed to squeeze in a quick trip to school before Stanmore - we are taking it in turns to sit like school inspectors at the back of the class while Rose does taster sessions of whatever her class are up to...I'm sure we only feel a bit more self-conscious than her poor teacher who is being very accommodating but until she is reliably more able to get around the classroom on crutches I can't see how else to do it. Rose is so wobbly that a sudden gust of wind would bring her down let alone a swarm of little girls on the move - but I'm hoping to be promoted to the corridor soon...

Then Stanmore - all was fine of course but it really was a taste of things to come. A long anxious journey, an anxious wait in x-ray, a desperate attempt to scrutinise the body language of the radiographer, another long wait in clinic and finally - and unexpectedly - Mr Briggs. We're sure he has a secret passage into the building as the consultant list in the waiting room clearly said Mr Briggs not in clinic and we were expecting to see his registrar, his house officer, frankly anyone that could download an x-ray was enough for us - but there he was large as life, twice as gorgeous, with a big smile and an image of Rose's beautiful prosthesis up in lights on his computer. All clean. Normal breathing resumed. Our patient clinical nurse specialist handed me a slip of paper to take to book for another x-ray in eight weeks and laughed when I asked her if she seriously thought that she wouldn't hear from us in the next eight weeks...I think she's hoping to get through at least Christmas now without the Alloccas. But the thought of that every eight weeks, plus similar levels of blood-draining fear for eight-weekly chest x-rays at the Marsden - perhaps we'll just get used to it.

So today was our first proper day of the week at home with the Marsden and Stanmore safely behind us for the week and no more mention of leg pain - and it was great. I took Rose to buy shoes - any incentive for walking - and she chose a fabulous pair of boots which she could hardly stand up to try on in the shop. Who cares, I thought, she can have them even if she never wears them. But once home, and experimenting with them on her crutches, the extra support, the excitement of them, who knows what, just the whole fabulous experience of buying them probably, had a definite impact and a tiny eureka moment occurred! With Simon and I cheering her on she limped round the island in the kitchen holding on for dear life but absolutely definitely and irrefutably PUTTING SOME WEIGHT THROUGH HER RIGHT LEG!! God, I thought to myself, she's my own daughter - why didn't I think of SHOPPING before...

And everything that Briggs had said yesterday - she'll do it now she's at home, she'll do it soon, I promise she'll do it - wasn't a lie just to make me feel better. For the first time in months I actually think she's going to walk again. She's made a schoolgirl error anyway as now we've seen it there will be no peace! She's had terrible stage fright for the rest of the day and hung grimly on to both crutches in case they are consigned to the bin...we haven't stopped praising her for hours and although it is a tiny step along the road she is secretly very relieved and excited and very proud of herself.

Kitted out in the new boots and with a whole new self-confidence we whizzed her to her school nativity play - she watched with us from the audience and loved every minute. We were very brave - with hearts too full even for tears we watched all her lovely friends and the huge hole on the stage where she should have been but we were not as brave as our amazing Rose who laughed and smiled and sang along and hugged herself with the pleasure of just being there.

Christmas trees and Claridges...

2008-12-08T23:33:00.015+04:00

Rose has been at home for three days! It's the longest patch Rose has had at home since the summer when she briefly experimented with the idea of staying out of hospital between chemos and then decided against it...and it's definitely a rollercoaster. Simon brought her home on Friday night full of good karma and how the new approach was to be no physio (?????), lots of fun and all about encouraging movement of any kind - space hopping, bottom shuffling, spider walking - rather than endless sets of boring exercises etc. I can totally see the angle and the hope that her horizons will widen and confidence grow but Rose's comfort zone is the sofa and any attempt to get her to move has been immediately met with 'but Tracy said no physio...' Good karma lasted almost round to Saturday morning and then we fell straight back into our roles of monster parents from hell. Simon had even belted out to Toys R Us to invest in a mini trampoline in hopes that she will start experimenting with MOVING but no, nothing doing, hours of buying and constructing for no payback. That sofa is just sooo safe and comfy...

Felix was over the moon to have her home and the weekend was full of fabulous moments - I had to stop myself from following them round endlessly with the camera but they played games together, made Christmas cards together, watched (hours of) rubbish on TV together, decorated the Christmas tree etc. There was no shift change at the hospital, no boring hospital visits for Felix or long car drives while we relay raced through another weekend - it was the four of us based in one place with nothing looming on Monday morning. Felix couldn't even be bothered to play mini rugby on Sunday - there was a sister to be played with and she wasn't holding a sick bowl for the first time in months. And while the children hung out I did some equally therapeutic stuff - whole cupboards of anti-sickness drugs, Hickman line emergency packs and painkillers were bagged and binned and two boxes of drugs and dressings packed up for the district nurses to collect. There's still a feeding pump sitting on the kitchen worktop that I can't wait to get rid of but until Rose gains another few kilos we are reliant on night feeding through her stomach tube - but we're getting there.

And on Sunday afternoon we went on a family outing for the first time since the trip to the London Aquarium on 21st March - hours before Rose would be diagnosed. And what an outing! Our Clic Sargent social worker at the Marsden had given us tickets to a children's Christmas party at Claridges - a fundraiser and thank you to the (rich and really posh - have never seen so much velvet and black patent in one room!) children of the patrons of Clic Sargent. It was absolutely AMAZING - champagne and chocolate fondue all the way with every imaginable activity, stall and entertainer. Felix: 'Is all this stuff FREE?!' Rose: 'Can I have hair extensions?' A hilarious fake hair in fake hair moment... They did it all - had photographs taken of themselves superimposed on Daniel Craig and Hannah Montana, tattoos, manicures, face painting, made gingerbread houses and jewellery, rode a bucking Bronco, table tennis championship, met St Nicholas etc. We stood pinching ourselves, blinking in the glare of so many healthy children running around and hardly daring to breathe in case the moment was shattered - it wasn't. Over-excited and full of sugar they fought in the car on the way home and that was almost the best moment - real family life. It was a first foray into the outside world and although the logistics of taking Rose anywhere are daunting we did it and it was a world away from my dismal solo trip to Pizza Express in Stanmore. I just wasn't aiming high enough - stopping the traffic in Brook Street and going to the front of the queue for St Nicholas so much more life-affirming!

And today more milestones - Rose visited her school for the first time since March. It was short and very, very sweet. As if nothing untoward had happened we popped in for an hour, learned some clocks and started to write a story - her friends were all very relaxed and very pleased to see her and Rose was absolutely furious when I told her we had to leave to go to a physio session. Maybe this will be the incentive we need so badly to spur her on - fourteen little girls running around and ready to play with...have promised more visits in exchange for more effort with walking.

But just as we were settling into an afternoon of 'fun' physio back at home Rose stopped us in our tracks with leg pain - a niggling leg pain that had started yesterday and bothered her this morning, but by this afternoon was bad enough for tears. A wordless exchange of looks, an hour of worry, worry, worry and then the inevitable call to Stanmore. Monitor it, come back for an x-ray before Christmas, probably nothing. But by then the blood had already drained out of us and the day - a body blow of reality that all the Christmas parties in the world can't save us from a future of worrying and watching.

Lets just go home

2008-12-04T20:14:00.012+04:00

What can I say? I could just copy and paste last week's blog really! It's all getting very boring and repetitive and that goes for my writing, Rose's attitude, the view from the gym etc etc...no developments this week so far despite best efforts all round. Black cloud of gloom and despondency - broken up by periods of total panic that there won't ever be any progress - hovering over Simon and I but for anyone who is worried that poor Rose is strapped to a treadmill enduring hours of rigorous training - forget it. She is having a great time - about ten minutes after arriving on Monday morning while I was still doing circuits from car park to ward lugging an assortment of Build a Bears dressed in nurses and doctors outfits, sticker books, her own body weight in DVDs etc etc Rose was happily settled at her usual table in the schoolroom making advent candles and calendars, checking out the day's nurses, catching up with friends from the previous week. Er, Rose, sorry to interrupt but it's time to go to hydro... Whatevvver.

So on we go. Half hour hydro sessions in the morning and half hour physio sessions in the afternoon - we struggle through those and then Rose gets back to the serious business of making mince pies, decorating Christmas cards, making decorations - it's all way too much fun and giving her very unrealistic expectations of how fun it (isn't) going to be back home. We definitely need to go up a gear in terms of boot camping it up a bit or maybe down a gear and take whole focus off walking - we are absolutely clueless now about how to take this forward and feel we have exhausted every route. I know that when physios start to say 'perhaps Rose needs some time at home' the subtext is 'we don't how to make this happen any more than you do'. I start every day with Rose as sunny and optimistic as Mary Poppins (today is going to be THE DAY) and finish it as scary as Cruela de Vil but neither approach are having any effect and Rose just isn't playing.

Trying to prove to Rose - and myself - we could do 'normal' things I decided to take her out for a pizza on Monday night. Without the wheelchair! We pulled it off - just - but it was terrifying (journeys from car to restaurant that look like yards, and in fact ARE yards, are suddenly miles) and there was a main road to be crossed which involved me throwing her under my arm and running. I have never been so happy to get back to a hospital ward as I was that night. Anyway we did it, she enjoyed it and I stopped shaking eventually - but it was a reality check for me. The outside world is a bit scary and she's got a really long way to go.

If anyone is going to inspire Rose it's lovely Michelle from the ward at Stanmore. Michelle is one of the play team, about my age (so really young) and had osteosarcoma 25 years ago. She did ultimately lose her leg after the cancer recurred but to begin with she had the same operation and the same prosthesis fitted that Rose has and knows exactly what Rose is going through. She was older and she has a fabulous, driven and determined personality which clearly saw her through and she has tried really hard with Rose this week. She told her that if she was her physio she would pick her up, put her in the middle of the room and take her crutches away...nervous laughter from Rose but I bet she would too. Michelle's story is bittersweet - the cancer came back but she's alive and she has two gorgeous children of her own. Oh for a crystal ball - if Rose is going to relapse I don't want to waste another precious minute on weight-bearing but in the hope, hope, hope that she doesn't we want to give her a future where she runs, skips and jumps through the rest of her childhood, dances at her wedding, runs marathons, etc etc.

So the consensus is no more Stanmore until after Christmas. Very mixed feelings - Rose at home doesn't move off the sofa and when she does move around is so wobbly that she has to be shadowed so the responsibility is huge. We are all as afraid as Rose is of her falling and injuring her leg - I think we are still traumatised by the fall in April when she broke the leg through the tumour. And at the bottom of all Rose's fears I am sure lies this one - that if she walks she will fall and the whole cycle will start again. On the other hand Simon and I are right out of adrenalin, we have come to the end of all coping strategies for hospital life, have had it now with pull-down beds, ward life, microwave meals and living out of a suitcase. We need to spend a couple of weeks together before all four of us fall apart - plus Rose has an array of out patient appointments back at the Marsden anyway next week for post-chemo tests so in fact more Stanmore not an option anyway. Stanmore will hand us over to our community physios who will take the baton on and try to persevere with Rose over the next couple of weeks and then I will take her back in January for more hydro etc.

I am so disappointed at how the last couple of weeks have gone but have got to try really hard not to let Rose pick up on how I am feeling - I need a huge injection of Christmas spirit, perhaps some back-to-back viewings of Mamma Mia, maybe even an evening out with my husband (who?), something, anything that will help fade out this year and make the future look rosy and bright. We'll start with decorating the Christmas tree together tomorrow night and take it all from there.

Oh Rose!

2008-11-30T19:31:00.015+04:00

Wednesday's enthusiasm and optimism a thing of the past after a frustrating few days with Rose at Stanmore. Simon brought her back on Friday night and although we examined her from every angle in every position we couldn't honestly see any improvement from this time last week. Every conceivable support is being put her way including hydro, 'land' sessions with their head physio, opportunities to go to the gym between sessions, riding their hospital tricycle to and from the gym to build up leg strength etc etc and Rose is the only one not committing 100 per cent - or even 10 per cent - to the programme! We are so lucky and so grateful to be getting this kind of support - four weeks of rehab since surgery so far - there are dozens, probably hundreds, of children and adults who would bite their hands off for the chance to have this kind of intensive support and of course I don't expect her to realise that but at some stage soon Rose is going to have to start trying.

Just as at the Marsden the world has cancer, here the world is in a wheelchair or on crutches, with one leg, no legs, recovering from spinal surgery etc and pressure on their resources is as everywhere high. They have a team of overworked physios who literally fly from out-patients to the wards covering all areas of the hospital seven days a week and getting patients who have practically just come round from their anaesthetics back on their feet. In Stanmore terms Rose is ancient history - operated on in June she should have been on her feet MONTHS ago. All very demoralising and frustrating - this is not the beginning of rehab for us this is weeks and months in and we don't seem to be getting anywhere. Even the unendingly patient Tracy (head phsyio) has told Rose that she is the only one that can take the next step (hah) to move this on. Rose nods, agrees, takes it all in, promises to do it next time and then trundles happily back to the ward with physio over so she can watch a film, do some cooking in the schoolroom, make some Christmas cards, etc etc. Aaaggghhhh. I resign.

We all want to start to get back to some kind of normal now - I am surrounded by people telling me how GREAT it is that it's all over, how FABULOUS it must be to all be at home together at weekends, how WONDERFUL that she's come through it and I want to SCREAM. Having Rose at home is not great, wonderful, or fabulous it's really, really, really hard work. She has absolutely no independence from us yet, cannot move on her crutches without adult supervision, cannot go to the loo or get dressed or have a bath without one of us with her constantly and our lives bear absolutely no resemblance to the lives we led before. We also cannot keep up this two adults to two children lifestyle for much longer - real life is coming back whether we like it or not and we have to try to move Rose forward as much as we possibly can before the end of this year. I honestly think in her six year old mind she thinks that one day she will just wake up and be able to jump out of bed and be back the way she was. I wish I could make that happen for all our sakes but I can't and she has got to start trusting in this fabulous amazing leg she has been given and start using it. Anyway. Got that off my chest.

There were good things about the week too - north London friends whizzed in and out with food drops and presents and Simon met inspirational and life-affirming Reece. Reece is 13, had osteosarcoma 6 years ago and is now playing football for his school. Most significantly for us he, like Rose, had a pathological fracture through his tumour and minimal surgical margins on excision. I love that boy. He is my counter to the father we met at the Marsden whose son's bone tumour had recurred within four weeks of finishing chemotherapy. Four weeks. Ohmygod. But in a world where Reece is out there living, breathing, walking and playing football there is hope and optimism and a future opening up for Rose. Perhaps we could get Reece to teach her how to walk again...

We are going back to Stanmore for another week in the morning and are as usual hoping and hoping and hoping for a breakthrough. We have tried not to make it all too much like hard work this weekend for Rose but probably failed - we cannot stop ourselves from constantly repeating a mantra of 'weight down, Rose, straighten your leg, put some weight down, come on Rose, ROSE!!' as left to her own devices she literally would not move between waking up and going back to bed. We're both shattered, short-tempered and for the first time in our lives understanding how people go out to buy a bag of sugar and never come back. We are really, really grateful for another week at Stanmore and if she doesn't make the most of it I am going to kill her. Can't say fairer than that.