Sophie's Funeral

Sophie's funeral will take place at 12noon on Tuesday 29th December 2009 at the Church of St Mary the Virgin in Bruton, Somerset. All are warmly invited to wear a dash of something bright and colourful.

Family flowers only please - we would be grateful for any further donations to Sophie's memorial page for Macmillan Cancer Support through the link on this page. If you prefer not to donate online, the funeral directors, W.J. Trotman can also take donations:
W.J Trotman
Ashdene
Frome Road
Doulting
Shepton Mallet
Somerset
BA4 4QQ
Telephone: 01749 880271

After the service a reception will be held in the Memorial Hall at King's School, Bruton where cars may be parked. The school is immediately next to the church. There will be a private burial in our village of Wanstrow before the family joins the reception.

Mum has suggested that we have a special table for cupcakes, 'rocky road' and any other goodies that guests might care to bring to share in Sophie's honour.

Thank you all for your love and support.

Alex, Malcolm, Rosie, Iain and Jag.

Sophie Julia Margaret Parr - by Alex, big sister.

As many of you already know by now Sophie had a tough few days at the end of last week and unfortunately she went into Intensive Care at the Whittington Hospital in Archway on Sunday morning and passed away soon after midnight on 14th December 2009. We are all lost without her but trying to look ahead the way she always managed to.

This blog was a really important way of Sophie managing the news of her diagnosis, coping with the pain and worry and showing off her talent for writing, her incredible, quirky sense of humour, her deep hatred of bananas and her magical sparkle that made her so special to all of us.

A special thank you to Audree for helping her to create it and thank you to all of you who read, commented, emailed or spoke to her about how much you liked it. She was thrilled with all the positive feedback and had great plans for the blog and for her future.

We wanted to at share the happy moments of Sophie's last week, which include the fantastic party she and Cali held in their flat on Wednesday 9th December and which gave her so much fun and laughter. I've uploaded these photos below.

We also have a video Sophie had recorded and planned to upload here so we will put it on soon. In true 'Sophie-style' her planned 30seconds turned into nearly 20minutes but she really enjoyed making it and was looking forward to developing a TV show with her wonderful Kofi one day.

Many of you have already donated to the Just Giving page Sophie established for Macmillan and we will turn this into a memorial page soon. If you would like to make a donation in her memory we would be hugely grateful.

I will post details of her funeral as soon as I can but it will likely be the week after Christmas, (28th Dec onwards) and will be at St Mary's church in Bruton, Somerset.

If any of you would like to contact me in the mean time please do email me: aknotay@googlemail.com

If you would prefer to write, the family will all be at home for the next few weeks:

Pear Tree Cottage
The Street
Wanstrow
Somerset
BA4 4TF

Thank you all for your love and support and for sharing your memories of Sophie with us. It is helping us through this incredlbly difficult time to know how much she was loved by so many people.

Alex.

Sophie's Party - 9th Dec 2009 part 3

Sophie's Party - 9th Dec 2009 part 2

Sophie's Party - 9th Dec 2009

WAITING GAME - Tue 8 Dec

This afternoon I met with my lung consultant, Dr Popat (!) and came out of the appointment feeling a lot confused after a heck of a lot of big medical words. Despite being told that I'll either be starting chemo this week or next week, it now turns out there'll be a bit of a delay, which is annoying as I was psyching myself up to start chemo soon. Dr Popat explained that because I fit into a certain category as a young, non-smoking woman, it's possible that my cancer growth has abnormal genes. If I am an abnormal person (i'm sure Ally will be delighted to have this officially confirmed!) then there is a drug called Iressa which can be taken orally as a tablet and it might be able to 'switch off' the cancer growth, which sounds pretty good and might be a more preferable alternative to chemo. So in 2 weeks I'll find out whether I qualify as abnormal, and maybe I'll start Iressa action. Otherwise Dr Popat will go ahead with chemo. Macmillan have a few more details about how Iressa works:

"On the surface of many types of cancer cell are structures known as epidermal growth factor receptors (EGFRs). The receptors allow epidermal growth factor (a protein present in the body) to attach to them. When the epidermal growth factor (EGF) attaches to the receptor, it causes an enzyme called tyrosine kinase (TK) to trigger chemical processes inside the cell to make it grow and divide.

Iressa® attaches itself to the EGF receptor on the cell and prevents the receptor from being activated. This stops the cells from dividing. Iressa® therefore has the potential to stop the cancer cells from growing. It works in a different way from both chemotherapy and hormonal therapy."

So there are still some big decisions to be made about my treatment and I have another 2 weeks of waiting ahead of me. I feel nervous about my symptoms getting worse, I feel upset at the thought of having treatment so close to Christmas and I feel frustrated and helpless that we can't start fighting the cancer now.

Saying that, the next fortnight would probably be a good time to look into complementary therapies like massage, acupuncture and meditation. Hopefully when the time does eventually come for treatment I'll be more mentally prepared to find a happy place and any recommendations in this area would be much appreciated!

Finally I just wanted to thank everyone for all your fab comments on my blog...I'm really getting a lot personally out of using this creative space and I hope you'll stay with me on this long, eventful journey and you continue to enjoy what you read! xxx

WEEKEND FUN - Mon 7 Dec

Vroooom! On Saturday Ally and I hit the shops in the wheelchair. Then my wonderful housemate from uni, Dr Helena came to stay and we had lots of fun watching X-factor (JOE TO WIN JOE TO WIN JOE TO WIN) and yesterday we ransacked Homebase and bought Jag's first Christmas Tree! Pretty ain't it! Still needs something on top though...