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Sunday, 16 June 2013

Amazing people

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Three AMAZING young men!

Three of Chloe's friends have just done some horrific military type challenge in her name.  Called "Tough Mudder" it sounded like some kind of torturous nightmare.  These beautiful young men raised over a £1,000 for the Teenage Cancer Trust (TCT).  More about the TCT in a moment.

My family and I were so deeply touched and proud that these busy young men took time out to do this challenge, to do it in our Angel's name and to then come and tell us all about it.  I really can't explain how touched I am. Rather annoying that I cried all weekend after they visited - but really I wouldn't have had it any other way.  Many reminders of the great fun Chloe would have been having, of the wonderful woman she would have become, of the family she may have had AND, I'm absolutely sure, the good she would have contributed to the World.

 Such loss.

Chloe would have absolutely loved the attention too.  Of course on the face of it she would have been her usual nonchalant self and later, when we were alone,  she would have admitted how much she loved these young men and how much they meant to her.  Under her beautiful, sometimes icy, exterior, she had a very very big warm heart and so much time and affection for her large group of female and male friends.  And I think - I guess - that this is why so many people loved our beautiful child.

There are so many good causes; but the Teenage Cancer Trust has to be at the top of my list.  The Bone Cancer Research Trust and the Little Princesses Trust are also personal favourites. Full of people who really care; people prepared to go that extra mile, to challenge the status quo and to work tirelessly to improve treatments/access for people - and especially young people - who have the terrible misfortune of developing one of these nasty nasty illnesses.

My kind of people.

We all continue to work hard in Chloe's name.  The media coverage has been heartening and we have good media contacts now.  Chloe's story is a powerful one - a young life cut so short by an illness with few treatment options and dismal survival outcomes.  V little innovation in new drugs, all kinds of blocks to developing better treatments, lack of investment and absurd and ill thought- out access criteria to clinical trials.

Lots is happening.  Over the next few weeks Chloe's story will be used in a number of high level meetings - one at the House of Commons - to call for national, European and international change.  Through extensive campaigning from  the Teenage Cancer Trust and local MP Sir Paul Beresford, I will be able to share our story with international oncology professors, regulators and others who have the power to change things for the better.  Our story is so sad; but we hope to use that sadness to ensure that others will not have to go through what our family had to endure.  Not in the 21st century.  It's just not right.

None of this would be possible without the kind of fund raising that these young men have done.  This kind of fundraising means that organisations like the TCT can work like they do.  It's crucial work.

And in my darkest moments, which remain pretty often, I yearn for my child.  And wish with all my heart that all this passion, love and energy could be poured into pulling her back into our World.  If only these young men weren't running in her name; if only they were running with her. If I could just snatch her back for an hour, that would be ok.  Just a quick gossip to tell her all that has happened, to show her her memorial stone, of her friends spending so much time with her, of all of the love, of how the colour in our lives has been permanently dimmed/destroyed by her loss, of the deep aching pain in our hearts..... if only.

Sadly my dreams have stopped coming true.  So all that's left is to ensure we do good things, wonderful things,  in her name.  That's all we can do.  And just maybe that's enough.  I know it's what she would have wanted and is how she would have most wanted to be remembered.

Please watch this space.  Chloe was a wonderful young woman; hopefully we can continue to do amazing, wonderful things in her name.

















2 comments:

  1. Dear Debbie,
    I have no doubt that these wonderful young men will be by no means the last people to do something amazing in the name of Chloe and to support your cause. Chloe had sooo many frinds and touched so many people - it was impossible not to love her - that her name, memory and support for her/you will live on for a long long time to come.
    I commend you for your bravery in being able to write this blog in Chloe's name - she would be embarrassed but quietly pleased and certainly very proud!
    Best wishes,
    Debbi (I have not forgotten, and probably never will forget Chloe - some patients just touch you!) xx

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  2. Hello my name is Shamiso, I first saw your story on Sky News at a very difficult time for my family. My nephew had been re-diagnosed with cancer and the doctors told us there was nothing else that they could do so we searched for alternative treatments and drug trials available in the UK. We too faced lots of barriers in these drug trials and unfortunately my nephew passed away recently. I have been looking through your blog and I'd like to say that your daughter sounds like she was a wonderful person and I think that it is great that you are carrying on that legacy and letting people know who she really was. I thought it was very brave of you to try to help other people who were desperate for drug trials and I would like to try and do the same. I was hoping that you could advise me on any ideas for how I could go about this. I don't know how much influence I can have on any laws or legislations but I still want to help at least one family who are going through this journey with a terrible disease. Thank you for reading this and I look forward to your next blog post.

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