Hello and thank you for visiting our page myself Neil parr and my wifeStephanie have set up this go fund me to try and raise money to enable us to pay for treatment for stephs brain tumour
STEPHS STORY: Steph was a fit and we thought healthy 31 year old until a completely out of the blue seiz ure in 2012 led to the discovery of a large grade 2 astroccytoma brain tumour in stephs right temporal lobe,the only option of a cure was surgery to try and remove the tumour. Stephanie therefore had the surgery in August2012.the 9 hour operation took place at the QMC in Nottingham and was originally thought to have been a success and so no further treatment was required, only 6 monthly follow up observation scans.
Unfortunately one of these scans in 2014 showed the tumour was growing and now incurable,so steph underwent a 6 week daily radiotherapy course to try and halt the growth of the tumour for as long as possible. The radiotherapy was extremely draining but when finished steph was luckily in relatively good physical health and we were able to live an active life making precious memories, then in October 2015 we were over the moon to discover that steph was expecting ting a baby, everything progressed well until steph was 36 weeks pregnant, at which stage the tumour grew again and this time the growth has had a serious effect on stephs physical health and has left her almost completely paralysed down her left hand side , unable to walk and wheelchair Bound outside of the house. the only hope of curing g this paralysis is to try and shrink thusing chemotherapy. Stephanie began a chemotherapy treatment, temozolide 2 weeks after the birth of our precious daughter lily -rose. After 3 cycles we were delighted to find out the chemo had shrunk the tumour by a 3rd and so the chemo continued and we had high hopes for its continued success However after 1 more cycle we were devestatedto be told the chemotherapy had stopped working and the tumour is now growing again, we were offered one last treatment option which is another chemotherapy, pcv. Steph is now on her 2nd cycle of this with an MRI scan due in December 2016 to see if it is working, if this is not the case then there are no more treatment options available for stephs tumour on the NHS which means the tumour will almost definitely continue to grow and ultimately be fatal
We have therefore been constantly researching other options that offer some kind of hope which are inevitably expensive private Treatments both in the uk and abroad. We are desperate to find treatment to halt the
Growth or best case scenario shrink the tumour and at the same time help improve stephs phsysical health which is very poor at the moment, she is unable to live an independent life andlnow requires a full time , carer herparalysis having a massively detrimental effect onher quality of life and theonly hope of some improvement in her symptoms and the chance to try and live a relatively normal life and create happy memories as a family is to find a way of shrinking the tumour
The avenues we have explored so far include a private drugs trial being run by care oncology clinic on harley street London, other options that we are investigating are immunotherapytreatment for which we have a consultation at the Private clinic in London. Obviously all of these consultations and treatments we need to explore are funded by ourselves and with steph physically unable to work this is going to be very difficult for us to fund.
Since steph was diagnosed in 2012 we set up Parrs beating brain tumours fund and with the help of friends and family we raised over £22000 for the brain tumour charity which we are very proud of however due to the change in Stephs health we are now changing our fundraising priority and asking for continued support to fundraise, but now the money will be used to fund any more treatment options we find are available over the coming weeks and months
We have set a high target of £100000 as we have been informed that treatment plans begin around this price region.
We understand that money is tight for everbody and any fundraising or donations people are able to do or make will be massively appreciated and we will provide regular updates on this page as to where any money is spent and stephs treatment plan.
- Beth Spencer
- Susan Murray
- Alex Baca
- Niki Payne
- Sian Norman
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