The last post

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."