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Clare’s Fight for Life

  • Final Update

      10 March 2019
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    Clare has made the decision that it is time to close the page and it is my great honour to bring all the threads of this amazing journey together as I take you on a look back through all that we have achieved. I deliberately use the word ‘we’ because you have meant so much to Clare and her family at this difficult time - I don’t think that words on a page will ever convey that enough. Please know that you did make a difference - and your support, no matter how large or small, meant so much at such a bleak time.

    Right from the start this page was about two things - raising money to fund the life-saving drug, Kaycyla, and raising support for change. I’m pleased to say both have been achieved. Clare has now undergone 11 doses of Kadcyla and the drug continues to allow her to enjoy the most important thing in life - spending time with her family. She is truly humbled by the financial support of family, friends and those who wish to remain anonymous. Funds came through the page but were also raised by raffles, stalls and sponsored events - the community came together to support Clare and recognise what an important part she has been (and will continue to be) as part of them. Funds also came in privately - the support has been overwhelming.

    Clare hasn’t just been fighting for her own life though - she has been battling for change for every woman. This has meant making her private struggle a public one - a huge step to take but such an important one.

    Clare and some family members flew to Wellington to be part of a group presenting a petition to Parliament. The petition demanded change to the way Kadcyla and other life-saving drugs were funded. No woman should ever be forced to make a decision about the length and quality of her life based on money - and so this amazing group of women asked that Pharmac change their funding model so that the drug is available to all. While I cannot tell you that change has been achieved yet - the signs are promising - a decision will be announced this year and our hopes are high.

    Asking for help is never an easy thing to do - it means making yourself vulnerable. Clare’s courage is an inspiration to us all - but please know that her ability to continue fighting was up to you.

    Nga mihi nui ki a koe - kia kaha.

    Great thanks and acknowledgment to you - be strong xx

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  • Christmas Greetings

      15 December 2018
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    Clare and her family would like to extend warm Christmas wishes to all the amazing people that have donated to her page this year! For those of you on this side of the world we hope the sun shines on your holiday plans and that you are able to enjoy the summer with your family - just as Clare is blessed to be able to do thanks to your help and that miracle drug Kadcyla. For the amazing donors who are scattered across the globe, please know that Clare is blown away by your support from so far away!

    Clare’s treatment has continued to produce outstanding results - her blood tests indicate that her liver function is stable and her health is good. She has been able to continue with her work at Plunket, on a part time basis, and more importantly spend time with her family doing the things that she loves!

    The fight with Pharmac to get funding for all continues. Progress has been made however, with Pharmac undertaking to meet in February to hear the stories of Metavivors. Clare will be making a video submission outlining her treatment and the results, as well as stressing the personal cost of self funding the drug.

    Clare will undergo her eighth round of Kadcyla next week. This one is ‘free’ - with only the transfusion costs needing to be paid by Clare.

    As the Christmas chaos overwhelms us over the next week, please remember that your support has meant that Clare gets to share this magical time with her family - and what greater gift is there than spending time with your loved ones? Merry Christmas xx

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  • March to Parliament!

      23 October 2018
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    Last week Clare and five other family members flew to Wellington to be part of a group taking a petition to Parliament to call for Kadcyla (and another similar drug) to be fully funded by Pharmac. While there are no guarantees that this will ensure change any time soon, it was a huge wake up call to the government. A record number of MPs were there on the steps of Parliament to receive the petition and the mood was one of determined optimism.

    The optimism continues with Clare’s progress. She has now had five cycles of Kadcyla with the sixth one scheduled for next week. The drug continues to change her life - enabling her to work part time but more importantly enjoy time with her family and friends.

    Huge thanks is extended to all this generous donors who keep giving a little towards Clare’s fight - please know that your kindness and support means the world to Clare and her entire family.

    https://www.stuff.co.nz/national/health/107588622/dont-write-us-off-advanced-breast-cancer-patients-lobby-for-access-to-drugs

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  • Four Doses and No Looking Back

      24 September 2018

    Clare has had four doses now of the amazing drug Kadcyla and life just keeps getting better and better for her! She has been able to return to her love of riding - getting out in the sunshine and enjoying spring. She has also been able to return to doing a few hours of work at Plunket. It is just incredible for all those close to Clare to see what a difference this drug has made - and it has impacted on the whole family - our joy is immense. Thank you so much for you continued support!

    The raffle in aide of Clare’s treatment was drawn at the weekend and seven lucky winners got to choose between the many generous prizes we have been donated (see below for winners). Thank you so much for all those who donated the prizes, bought tickets as well as those who donated horse gear for the many stalls manned by Jenny Hooper, Ann Stewart and their wonderful team. Clare is overwhelmed by these amazing people who not only came up with the idea for raising money but went ahead and drove the project week after week.

    Another speical mention needs to be made of Ruby Marquet who sold lemons to raise money for Clare - what a lovely thing to do!

    Pressure still needs to be maintained to get Kadcyla within the reach of every woman who needs it. To this end Clare and some family members will form part of a group travelling to Wellington on 16 October to present a petition to Parliament. Keep an eye on the news that night - we are right behind you all!

    Thank you once again for all your kind support - keep it going - it’s making the world of difference to Clare and her whole family.

    The raffle was drawn by the president of the Amberley Pony Club at the Amberley Cup and the winners were:

    1st Lynda Bradberry

    2nd Brianna Bailey

    3rd Teresa Rosanoski

    4th Kerry Florence

    5th Anya Galbraith

    6th Caroline Edwards

    7th Trish

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  • Cycle Three Coming Up!

      29 August 2018

    Thank you so much everyone for the kind donations that continue to trickle in. Tomorrow is cycle three of Kadcyla for Clare. The drug has made such a difference already - allowing Clare to enjoy the simple, but oh so important, things in life - celebrations with family, precious times with her boys and chances to laugh and relax with friends. Please know that she has only been privileged to access this drug thanks to YOUR kind support and how blessed she feels to know that you are all right behind her in her fight for life.

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  • Ticking Along Nicely

      20 August 2018

    As you can see things are ticking along nicely with the fundraising. Clare would like to extend a huge thank you to everyone for your support and kindness. There are still plenty of opportunities to keep that total rising though. This Friday there is a fun run for preschoolers being held in Amberley organised by the Amberley Preschool and Nursery all proceeds going to Clare. There is also a raffle underway kindly organised by Jenny Hooper. This will be drawn at the Amberley Cup held at Amberley Pony Club on the 23rd September. There are many awesome prizes up for grabs and tickets can still be purchased from Balcairn Stockfeeds or Jenny Hooper. They will also be for sale on the day of the cup.

    Clare’s bloods results continue to improve and the doctors all seem happy with her progress. Next week is Clare’s third round of KADCYLA. Thank you again everyone for making this all possible xx

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  • Two Doses Down!

      14 August 2018

    Thank you so much to everyone for their support for Clare - it has truly been humbling to read your messages and has meant so much to her, giving her a much needed boost at such a difficult time.

    Clare has now had two doses of what is proving to really be a life-changing drug - Kadcyla. Her blood tests show that her liver function is improving rapidly and her specialists are impressed with the way she is responding to the drug. Clare’s quality of life has completely changed and that’s down to you!

    The future involves more treatment - each dose and infusion costing $9,500. Roche, the drug company, provides a cost share programme where they give her the fourth, eighth and 12th doses for free - leaving her to only pay the infusion costs. After her 15th dose the drug becomes free (with infusion costs to be paid separately). There is light at the end of the tunnel but Clare still needs your support! Please keep sharing her story and helping her to raise the rest of the funds so desperately needed. Please keep making some noise around this issue. The way the drug is funded needs to change - women like Clare should not have to take on this financial burden just to live. Life-changing drugs like Kadcyla should not be only within in the reach of those who can raise enough money - they should be there for everyone.

    Thank you once again for your support - please know that every cent means so much xx

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