The Next Phase……

My final blog begins a new phase for Cure4Charley  ….

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The fight and the love that we all put into finding a cure4charley, was not in vain. No-one feels the pain and the loss more than Charley’s family and I, when we were not able to save her life, but so many of you lived this journey with us, and I hope you can continue to keep in your hearts the lessons we have all learnt along the way.

It was a wonderful life Charley lived and she was such a beautiful person, you only had to see her smile or hear her laugh to realise that. She cared so much for others and lived her life in the hopes that one day she could make a difference. She did. She has made such a difference in all of our hearts and I know that I will hold her courage and spirit in my heart till the day I die; I only hope I can be as brave, kind-hearted and dignified when my final days come.

In Charley’s memory, her incredible sister Harriet has decided to set up a charity to help others dealing with equally difficult prognoses. It is something Charley discussed at length with Harriet and I and would have become her vocation should she have been able to beat this terrible disease.

The Charity will be called “The Ashton Foundation” and will aim to make a difference to those who feel lost and alone in their battles with cancer on account of them not fitting the umbrella of any previously established diagnosis.

It is a lonely place having a disease no-one knows about and an even lonelier place when no-one is prepared to offer you hope. So Harriet, being so similar to her sister has decided that it is not acceptable for people to feel like this and with the support of Charley’s angels who set up the initial campaign, we intend to carry out Charley’s wishes.

The Ashton Foundation will be formally established and launched on August 11th 2017, which is Charley’s Birthday and a day we will aim to waterski for her each year and remember the inspiring battle she fought. Only a year ago today did she have the strength and determination to get up on a single ski and waterski for the final time, even when her body was full of Chemo and was saying no, Charley never took no for an answer, she was remarkable like that.

The remaining sum of £30,000 will be used to set up the charitable fund of The Ashton Foundation and there is a link above to the new website. Harriet has set out her Mission statement and the objectives of the charity and then it is up to you if you wish to continue with us on our journey to make a difference to those struggling with a rare cancer. With over 50% of cancer deaths coming as a result of a rare or less common cancer we will aim to provide a voice for rarer cancer sufferers. I am well aware that most of us all support a variety of charities and there are so many people in need, but even if you follow the page and possibly find an event that sparks your interest, it would be wonderful to keep in touch.

So thank you from the bottom of our hearts, you are all wonderful people and we wouldn’t be able to continue Charley’s legacy in such a positive way if it hadn’t been for your support.

Jess and Aurelia x

Martlets Donation – Hospice at home

More of your money is helping others. From C4C donations and donations made at Charley’s funeral, a whopping £27,725 has now been donated to Martlets Hospice, being specifically directed towards their Hospice at home team who provided Charley and I with so much support over the last 2 years and martlets continue to provide me with support now.

Martlets are a charity entirely dependent on donations from the general public and it is hard for me to believe that without the kindness of others having funded Martlets over the years, then we would not have had their support through such a difficult and heartbreaking time. Charley had a spell in the Hospice, but it was not for her. However, they then put us in touch with the hospice at home team who provide expert end of life care at home which is where Charley wanted to be. 

If you’ve chosen to receive end of life care at home it can be a terribly sad and daunting prospect, questioning whether you will be in pain or struggle with symptom control.  The hospice at home team, however, were always available to visit, providing high level nursing care, probably similar to that you would find on the ward, but at home, meaning we could be together, and gave Charley the opportunity to spend the most time possible with Aurelia (our daughter) and I. Their experienced team made frequent visits and assisted us with pain management, symptom control, and emotional support.   They also work closely with the specialists and doctors at the hospice to ensure you have access to any medication you require urgently.

Martlets are part of the Palliative Care Partnership (PCP) – a combination service of specialists who provide support, care and advice. Once you’re in their care, they make sure that each member of the team, and any health care professionals you see regularly, are updated. It sounds like a simple thing but for us, trying to keep everyone in the loop was a very stressful process, but they take all of that stress away for you. Access to the Palliative Care Partnership is free, but only due to donations. We never thought in a million years we would find ourselves in the position of needing hospice care at our stage in life, but life throws you curve balls and it is not what happens to you, its what you do about it that counts. Charley fought the bravest of fights, she wasn’t one of the fortunate ones, but I know she will be so proud to think she can help others in a similar position to find some comfort.

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It really warms my heart to be able to give back to such an important charity who really do make a huge difference to the lives of those who need the most help. It will not bring back my wonderful wife, but if we can help others to have the same support we did in the darkest of times then that really is a gift indeed. It is only thanks to you all and all of your hard work that we are able to give back in such a generous way and for that I thank you all from the bottom of my heart.

Jess x

Your generosity is now helping others…

Sarcoma UK Donation

After much consideration the Cure4Charley fund is finally being put to good use, and will hopefully improve the lives of others with rare cancers. The fund will be split between 3 Charities, the first of which is Sarcoma UK. The Cancer Charley suffered with was a form of Sarcoma called Inflammatory myofibroblastic tumour. Sarcoma Uk is a relatively small charity that packs a big punch.

A donation of £60,000 has been made to Sarcoma UK and will have an enormous impact on the lives of those affected by sarcoma and their families. Sarcoma UK funds ground breaking research with the aim of finding a cure for sarcoma. They also provide vital support to help people cope with the devastating effects of sarcoma and the problems people face with trying to find treatments in an area where very little research has been carried out.

Research

Sarcoma UK is recognised as one of the leading funders of sarcoma research in the UK. Despite their relatively small size, they have contributed £1million into sarcoma research in the last two years alone. Information about their current funded grants is on their website: https://sarcoma.org.uk/research/funded-projects.  They have a new set of grants that will be announced next month including a project that is investigating a new form of viral immunotherapy, and also a pathology project that is investigating how a blood test could be used to identify genetic markers that may result in easier and quicker diagnosis for sarcoma. On Friday 30th June, we met to talk about whether we would like to support a particular project or whether we would like the donation to support research across all of the funded projects.

Support

Sarcoma UK’s own expert nurse specialists – Helen and Sam – provide support and information about sarcoma through their national Support Line service. They help people with sarcoma and their families navigate the complexities of a sarcoma diagnosis and treatment options, offering much-needed emotional support. They have been described as a “lifeline” by many callers. Since the service was launched in February 2016, they have supported over 1000 people affected by sarcoma and their families.

Ultimately we are looking at setting up a ‘group fund’ called Charley’s Fund which you will now be able to see on the Sarcoma UK Website. These are very special funds that have been set up by family and friends through Sarcoma UK to recognise the achievements of a loved one. Here is the link to Charley’s Research Fund. Charley’s Fund will look at heavily supporting the research element, but may also help to fund the support network for families dealing with the disease. Please refer to this for updates on how the money is working for others.

I will write again to give information of the next donation to be made on Tuesday to Martlets Hospice. Thank you all for your continued support.

Jess x

 

Funeral arrangements for Charley

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Since my last announcement on this site, I have been inundated with the kindest messages of support and would like to sincerely thank everyone for keeping us all in your thoughts.

Charley’s funeral will take place at 1.30pm on Friday 28th April at St Nicholas Church, High Bradfield, Sheffield S6 6LG and everyone who would like to attend will be welcome. Charley will stay in our hearts as a truly colourful character and it was her request that at her funeral people would reflect this colour in their outfits instead of traditional black.

A few practical notes to bare in mind on the day. I anticipate that the funeral will be a busy occasion and with this in mind seats will be taken quickly. Parking is limited and will be an issue on the day so please allow time to find a space if you are driving to the church. The Old Horns Inn is a pub close to the church and would be a good place to meet people before the service.

Please be aware that mobile signal in the area is not good for some service providers.

Following the church service there will be a short, private service at the crematorium for family only.

The wake for family and friends will take place at Charley’s family home in Loadbrook and at Charley’s request will be full of smiles and chatter, G&Ts and cream teas.

Family flowers only please but anyone wishing to make a donation can do so to Martlet’s Hospice, who’s hospice at home team looked after Charley so well.

Jess

She’s got a way about her…..

She’s got a way about her‘. The words of this song by Billy Joel could have been written to say exactly how I have always felt about my beautiful wife Charley and always will.

With incredible sadness I must share the news that Charley finally lost her brave battle with cancer on Friday evening.

In recent weeks her health took a turn for the worse and began to deteriorate. She took great comfort from spending quality time with immediate family who were by her side until her final breath and who are understandably heartbroken.

Thank you all so much for the immense support and encouragement that has come our way in the past ten months since Cure4Charley was set up, the love that we have received from all around the world has given us unimaginable strength.

As of this announcement it will no longer be possible to donate to the Cure4Charley fund and the fund is now frozen.

Unfortunately since the founder of The Rarer Cancer Foundation passed away, it is no longer operating as a charitable foundation. Charley’s wishes were that the funds raised in her name are to be distributed to help fund research and support others also fighting such an impossible battle.

In the coming months the family will provide an update as to how the funds will be distributed but everyone can rest assured that the funds will be distributed in their entirety, to charitable causes which help others in their battle with rare cancers.

Further details of Charley’s funeral will follow shortly. This will take place in Sheffield on Friday 28th April and those people who want to attend will be very welcome.

Jess

Immunotherapy we need you….

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So the time has come to put our faith in science and hope to God that I am one of the fortunate ones! The Chemo and Avastin approach has not been successful and as a consequence has left me very weak and needing to put some serious weight on. The Scan results were not so good and have shown that there has been some growth and spread of the cancer.

I start Immunotherapy and Crizotinib on Friday 17th March as my final treatment option. This usually takes a couple of months to reveal whether it has had any effect, so by Easter time we should have a better idea of whether it is working or not.

Crizotinib involves taking a tablet once a day which means people avoid hospital which in turn frees up staff.The pill usually costs £51,000 per patient for a course of treatment.  Crizotinib is licenced for use in people whose cancer has a specific genetic mutation known as ALK-positive. Whilst my tumour did not show up as ALK-Positive, the tests for this genetic mutation are still fairly primitive and there is a chance it has not been detected.

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Immunotherapy Nivolumab (Opdivo) is a human monoclonal antibody (immunoglobulin G4) that blocks the programmed cell death‑1 receptor (PD‑1). This receptor is part of the immune checkpoint pathway, and blocking its activity may promote an anti-tumour immune response. Nivolumab has a marketing authorisation as monotherapy ‘for treating advanced (unresectable or metastatic) melanoma in adults’. It is administered intravenously over 60 minutes at a dose of 3 mg/kg every 2 weeks. The summary of product characteristics recommends that ‘treatment should be continued as long as clinical benefit is observed or until treatment is no longer tolerated’. The acquisition cost of nivolumab and the nurses to administer it is £11,156 per month.

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So this should hopefully give everyone an idea of what is going to be involved over the next few months and in the mean time we wait. I fully intend to make the most of this time, planning trips to see family and possibly even a holiday if I can manage it (no medical Insurance though!)

Can I just take the opportunity once again to thank each and everyone of you for making this treatment possible and for all of your love and support through this god awful journey. I hope no-one ever has to go through this again, but I fear they might until we find a cure. I hope that the result of me having the treatment helps with research and most of all I hope if anyone does have to go through this, they are surrounded by the love and affection that I am, because it is the only thing getting me through.

I will be in touch again when I have any more news.

Charley & Jess

 

Treatment Update – Avastin

I have a feeling 2017 is going to be my year! Although it has been a rough start with most of January spent in hospital and a very busy time for Aurelia’s 2nd Birthday, we are still going and there is light at the end of the tunnel, thanks to you amazing people!

Since the fund, I have moved to a consultant Professor Stebbings who is based at LOC on Harley Street and he is definitely someone who looks outside the box with regards to treatment. He has engineered a cocktail of Chemotherapy with a special targeted therapy drug called Avastin, which has had savage effects on my body, but in about 3 weeks time we should know if it is working, and it should all be worth it!

Avastin works differently than chemotherapyAvastin is a tumor-starving (anti-angiogenic) therapy. The purpose of Avastin is to prevent the growth of new blood vessels. This includes normal blood vessels and blood vessels that feed tumors. It also enables the Chemotherapy to have a more significant effect, hence the cost of around £30,000 per year! I have been on this drug for almost 5 months now and soon we should have some results.

Should the results not be the desired ones, we will then move on to the Immunotherapy, however, this comes with its own risks of causing my immune system to start attacking my body and could be fatal, hence the delay and caution. We thankfully are buying (literally) me time to be able to have options and the longer I can keep going the more advances are made in medical research and the more chance of me finding the magic cure!

I just wanted to give everyone a little update as to how the fund is being used and what the next plan of action is and then hopefully, in a couple of weeks I will be able to update you with some results. Thank you all again for your support and keep smiling, life is too short not to!

Charley xxx

 

HAPPY CHRISTMAS FROM C4C :)

A little Christmas update from Charley’s brother and sister… Olly and Harriet. All we want for Christmas is a Cure 4 Charley…

Charley has always been the strong one; the one to take the lead, the one to offer advice, the bossy one, the decision maker, the protective big sister. However, it is now our time to be the strong ones, to protect her and to help our sister fight harder than ever to beat the evil disease that is cancer.

2016 has been a pretty cruel year for Charley’s family and friends but it has honestly brought us all so close together; we are a team, we are stronger than ever and we WILL fight this.

Charley has had a very tough time since the cycle4charley bike ride, spending over 2 months in hospital, away from our gorgeous niece Aurelia and beautiful sister in law, Jess. They both have had a very difficult time without Charley being around. Charley has undergone five rounds of chemotherapy and has been on copious amounts of strong pain relief. Charley’s consultant was not satisfied with the results of her previous chemo as the tumour was shrinking, but not shrinking fast enough. So, she has started her on a new type of chemo which is resulting in some pretty nasty side effects, making her quite unwell, very weak and unable to carry out daily tasks.

On top of all this, Charley has had a couple of setbacks in the form of nasty infections and abscesses, one of which was on her liver and had to be drained. This meant she was in constant pain and unable to go home. But, you know what, our sister is a warrior and she is not giving up the fight. Charley will be back in hospital on Monday to have some more chemotherapy, we will then see how she reacts and fingers crossed we can have her home for Christmas…..

Immunotherapy is still the plan of attack for Charley if chemotherapy is not the answer. As Charley’s type of cancer is so rare (the only type in the world!) they are unsure of the best course of action, so unfortunately it’s a lot of trial and error at the moment. We have to be patient and see how Charley reacts to the new chemo first.

We have now raised nearly £150K to fund Charley’s treatments, whatever they may be, and we are so touched by everyone’s continuing generosity and support. We are hoping to begin immunotherapy as soon as we are given the green light, but in the meantime it is a waiting game to see how Charley reacts to the new chemo. With an estimate of £100,000 per year, immunotherapy doesn’t come cheap, so we will be racking our brains in the new year for new fund raising ideas. WATCH THIS SPACE!

Something that has really struck a chord in all of us over this last year is how much people take for granted. It is so easy to be sad about what you haven’t got, complain about mundane things and it’s not as easy to be grateful for what you do have. Your health is the most important gift you have, so cherish that. Please.

We are so lucky to have such an amazing family and such a supportive network of friends. Yes, things could be so much better right now and Charley could be cured, but we have been dealt our cards and we absolutely have to play the hell out of them, now more than ever.

We ask that you join Charley’s Angels and help Charley keep the fight alive over Christmas.

Have a wonderful Christmas everyone and here is to a PHENOMENAL 2017!

Olly and Harry x

 

Bridge4Charley raises thousands!

Two bridge drives held in Leicestershire on October 14 have raised thousands of pounds for cure4charley!

Charley’s mother in law, Andrea Grindley, held the afternoon and evening events, which included Chicago bridge, a lavish meal and a grand auction, with superb holidays making up some of the prizes donated by friends and family.

The afternoon Bridge4Charley was attended by 44 bridge players who made up 11 tables and enjoyed a delicious afternoon tea of sandwiches, chocolate biscuits and cake. The good chatter and great atmosphere raised £175 in the raffle, but it was just a taster of the great things to come later that evening.

This time another 44 players came to enjoy home-made Chicken Marengo, new potatoes and vegetables, deliciously chocolatey puddings, pavlovas, fruit pies and trifle – all of which disappeared very, very fast!

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Then began the bridge and auction, with Peter Bruning giving a marvellous performance as auctioneer. Organisers were blown away by the generosity of the people on the night and in total the bids alone raised exactly £2,000.

Andrea said she was delighted by what a success both events were – in no small part down to the massive support of the local residents involved in the organisation, particularly Jane Harvison, Emily Carr, David Mills and Peter Bruning.

After donations and everything else was added up, Bridge4Charley raised an amazing grand total of £3,740!

Andrea added: “I could not have done it without the tremendous help and support from so many lovely kind people in Billesdon, Leicestershire. We’ve only been here four years, but it really is home.”