It is with a great sadness that I have to write that our beloved daughter, Kiera, passed away peacefully this morning just after 10 o'clock. It is difficult to describe our emotions. We are grateful that she isn't suffering anymore from the tumours that she so bravely fought, yet she has already left a big gap in our lives. We had over 11 wonderful years with her and those memories can not be taken away from us.

We are so grateful to everyone who has been with us, especially the nursing staff at Kingston Hospital, Momentum, The Royal Marsden. the Community Nurses, everyone at The Shooting Star House and all of our friends and relatives.

No one told us our little girl was really a homesick angel. We both love you, Kiera and always will.

Yesterday morning, Kiera woke up with a headache and with more vomiting. The nurses called and increased the dosages of medicine to keep everything under control but by the afternoon Kiera had slipped into what can only be described as a coma. Ann and I took the decision to move Kiera to the Shooting Star Hospice, because there Kiera could receive round the clock care, which it was clear that we couldn't provide at home. It's just gone 3pm on Thursday and I've popped home to get a clean set of clothes for Ann and me. When I left, Kiera was still unconscious.

The Shooting Star Hospice in Hampton is a wonderful place, providing round the clock care for Kiera with trained staff, and allowing Ann and I to come to terms with the inevitable outcome.

 

It's been a roller coaster weekend! On Saturday, K spent most of the day asleep. She'd been having medication every 4 hours, delivered orally but she was still being sick and getting headaches. On Saturday evening the nurses connected up a small driver that holds a syringe and administers the drugs through K's Hickman line over a 24hr period. The difference that has made is amazing! It's also portable and can be carried around like a small handbag (if there is such thing!). Today she was well enough to go to Garsons Farm and pick some raspberries and some veg. When we got home she made some fruit salad for Ann and me. (That's on top of making chocolate brownies last night at half ten!). Hopefully with the new medication we'll be able to get out a bit more and make the most of our time.

Thanks to everyone, again, for the thoughts and the messages! We've had so many texts and e-mails it's been difficult to keep up with responding to them. We are so lucky to have so many great people on our side!

We're all comforted by your thoughts and expressions at this time. I thought I should put a few words together to let you know what is happening. K goes through periods of tiredness and so far on two occasions has gone in to what can only be described as a "fit". The first happened on Sunday which scared the **** out of us, we called an ambulance and by the time it arrived (about 4 minutes!) she was awake though we still went to hospital, but were back home within an hour.

Yesterday we all went to the Craft Centre at Syon Park to buy some "arty" stuff (Thanks, Bianca!). Last night while walking to the loo she had another fit. These aren't convulsions, more like a very deep sleep, almost coma like. She awoke, quite grumpy a few minutes later but then dozed off and had a peaceful night. She is sleeping downstairs on the bed settee and Ann or I sleep on the other settee.

This morning she awoke with a slight headache, which was seen to with some new pain killer that doesn't make her drowsy and is watching "Sorcerers Apprentice" on TV, Nanny McPhee and doing some "arty" things! (While eating chicken nuggets!)

Whilst we are aware of the outcome, we want you to know that she is having "good" moments. She is not aware of her situation and becomes confused at times, although I don't think we'll hide it from her should she ask.

So thanks again for your kind words and thoughts.

Kiera had a scan yesterday which only confirmed our worst fears, that the tumour is more aggressive and that a second tumour appears to be forming. In light of this, Ann and I, with the Dr's agreement have agreed that it is time to stop the treatment as it is not effective and will now only delay the inevitable.

After the scan, Kiera took Ann and I to see Shrek 3, which we all enjoyed.

We really value and thank everyone for their kind messages of love and support during this time. Once again I would ask that you don't 'phone us as it disturbs Kiera, but your messages here, or on text or e-mails are a real source of comfort.

The headaches and vomiting that Kiera had when the brain tumour was first diagnosed have started again. She spent Friday in hospital and she is now at home on more steroids and pain killers. After the apparent success of the treatment this is a setback. We would ask our friends and colleagues not to ring us at this moment. E mails are fine but may not be answered quickly. Hope you understand. Thanks.

The Great British Duck Race is going to take place on 2nd September 2007, when over 150,000 sponsored rubber ducks will be let loose from a point nr Hampton Court and race for a kilometer. You can sponsor a duck and raise money for Momentum, and there's over 30 prizes including £10,000 for the winning duck. For more details got to http://www.thegreatbritishduckrace.co.uk/charitypage.php?charity=205

Thanks

A big thank you to everyone who went to the Dillington garden open day, especially Nita and Jim for hosting it and Lesley and Rik for all their help with it. Thanks to everyone who donated time, effort and money. A total of £10,000 was raised for Momentum which just magnificent and will go towards helping children like Kiera get through their illness.

Talking of Kiera! She goes from strength to strength! On Wednesday she walked into Teddington on her own, did a bit of shopping then came back. No scooter or wheel chair in sight! Yesterday Kiera took a small table at the school summer fete to sell the necklaces, bracelets and other bead things that she's made. Made a tidy profit on them!Today, Kiera, Ann and I CYCLED to Teddington Lock for their open day. These little displays of effort seem to show to us that she is really making progress and is on the mend. Chemo continues for the next week, then a weeks break from it.