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.

Not too much to report! K started her 4th course of chemo today, following the usual routine. This morning she spent a few hours at what will be her new school, Teddington School before going to the marsden with Ann. She is remarkably well at the moment and we just hope that it's a sign of things to come.

NOW! A DATE FOR YOUR DIARY!

23rd September, Momentum will be holding a Cabaret Evening in Clarendon Hall, York House in Twickenham. A welcoming drink, 3 course meal and entertainment for £48. Tickets are available, please go to Momentums website for more details.

Kiera had a chest XRay last week. The Dr said that there was now no visible signs of active cancer in either K's lungs or chest. This is another small step on the way to beating it! However, the tumour has calcified: Once it's died it stays put as the body doesn't have a mechanism for expelling it, so regardless of K's health it will always remain in situ and will always be at the back of our minds. There is, obviously with the brain tumour a long way to go. K completed her third course of chemo this week and it has slowly started taking it's toll on her but she does a very good job of hiding it from people around her. It's only when she's behind the front door that she flops out. She is one very brave lady and so is her mum!

Today we went to Wraysbury Fayre where Dilly, Eamon and Oliver, friends of ours had a stall and thanks to them for raising funds for Momentum. We had a great time and I managed to win a coconut for K. (Yeah, I know, bragging again!)

As a little celebration tonight, Ann and I have cracked open a bottle on Verve Cliquot. Cheers to everyone who has supported us and helped us get this far! Thank you so very much! To everyone!

Ann had a conversation with Kiera's oncologoist yesterday and it's been confirmed that the swelling has reduced and it appears that the tumour is responding well to the treatment. You'll know that we've been on something of a roller coaster ride, especially after we thought that the tumour in Kiera's chest was being bashed into submission, only to be hit by the brain tumour, but this is very good news although it's still early days. The oncologist is going to reccommend at least a further 3 courses of chemo which will take us towards September but I wanted to share this with you to show that there is a light at the end of the tunnel.

Things have been pretty quiet since getting back from the Isle of Wight! Kiera was due to start chemo last week however her blood counts were low so it was posponed until yesterday (Tuesday). It should have been Monday but Momentum had organised a trip to the BBC TV Centre for the kids so K went on that instead. Now we're back to the chemo routine, two lots each day for this week, one lot each day next week then recovery. Last week she had an MRI scan on her brain. We were told that if there was anything untoward we would be called but so far nothing so we are encouraged by that. We should be seeing her consultant soon but in the meantime, outwardly, K seems to be responding to the treatment positively. At the moment K is spending her time creating lovely bracelets, necklaces and tassles. She's got quite a few commissions!

Last Sunday I decided to re-build our main PC. Not a big mistake, but sometimes these things have a way of taking up more time than expected, consequently both Ann and I have had limited access to e-mails, so apologies if you've sent one. Hopefully not lost, just hiding somewhere!

More soon!

 

Recently there have been problems with the redirection of www.kierabrown.co.uk and www.kierabrown.com If you are unable to access the blog from either of these two addresses, please point your browser to www.jeffreybrown.co.uk where the blog is located. You can add that as a favourite if you wish and it will go straight to the blog.

Thank you to everyone who attended the Garden open day on Saturday and to those who organised, ran and supported it. It was a resounding success and Momentum will benefit from it to the tune of around £6500. Everyone is really touched by peoples generosity and rest assured the money will be put to good use helping children like Kiera get though their illnesses.

Well, we all had a great week in the Isle of Wight. On Monday morning we waved goodbye to Kiera and her classmates as they set of for Portsmouth, en route to Shanklin. Ann and I then set off for our short break...also on the Isle of Wight. Kiera stayed with her friends at one side Island, we stayed in Freshwater on the opposite side.

Kiera managed the whole week without any problems although she had started to flag a bit come Friday morning but by then it was the homeward journey. The only time we met up with K was to collect her from the hotel on Thursday morning and take her for a routine blood test at St Marys Hospital. Kiera had only missed a 2 mile walk over the Downs so she wasn't too upset when she met up with the class at Allum Bay. Then she was off and we didn't see her again until the coach dropped her off at the school this afternoon.

Her blood test on Thursday was not as good as it could have been so they've decided to delay the third round of chemotherapy for a week, which as it's half term is no bad thing.

We're extremely grateful to Mr Logan and his staff for keeping an eye on her, from what he tells us, she has been really amazing for the whole week. In fact I think his only real problem was putting up with mum, checking up a couple of times each day! Also, we can't forget the nurses and staff at Kingston and Royal Marsden hospitals who did their best to ensure that K was healthy enough to go on the trip.

Ann and I would  like to thank Nicola for allowing us the use of her house on the isle and for pointing out some fine places to eat and drink. We had a great time and a much needed break as well!

Another day another run! Well done to everyone who took part in the Schools Fun Run at Bushey Park today. It was a brilliant event with lots of people and sunshine! The money raised from the event is to be split between the school's funds and Momentum. Kiera managed the 3km, albeit with the aid of her electric scooter and it was a shock for Ann as her legs were only just getting over yesterdays Race for Life!
So that's probably it for a week. Tomorrow morning we're off to Isle of Wight, Kiera with the school and Ann and I lurking around the Isle but not cramping our girls style.

Big congratulations to Ann, Tina, Charlotte, Jo and Kath for completing the Cancer Research Run for Life 5k run in Richmond's Old Deer Park today. Between them they raised over £1150 for Cancer research and they were all running on behalf of Kiera, who was there to cheer them on. Thanks to them and thanks to all of their sponsors! Thanks to Sarah for the champagne at the end!

Kiera's second round of chemo finished today so the plan is now for her to go to the Isle of Wight on Monday for the week with all of her class. Ann and I will also be on the Isle but staying on the opposite side, just in case, but we hope that K will have a good break with her friends and we'll just have a break!

Pleased to repot that K is now back home. Seems it was some kind of viral infection that has run it's course. The chemo continues though for this week and the Isle of Wight looks like it's ging to happen. Fingers crossed!

Kiera is spending another night in Kingston. Her temperature is still up and down like a yo yo but she is being quite stoical about it, Her main concern is to get to the Isle of Wight next Monday with the rest of her class. I'm sure she'll make it!
Today we heard from a friend of ours that someone has asked for a gift to be passed to us anonymously. I sit here trying to put into words exactly how Kiera, Ann and I appreciate everyones thoughts and kindness towards us and I find it so hard to do. The words "Thank you" just doesn't seem to be enough! We've been on a real emotional roller coaster. We've been warned so many times about potential outcomes, we've had bad times and we've had good times and through it all we've had you with us, supporting us and letting us know that we are not facing this on our own. I've typed it so many times and each time I do I wish I could really convey just how much your love, support and friendship means to us.

Kiera has done really well so far to avoid any infections but the last few days has seen her temperature fluctuating between normal and high. Today it went over 39 degrees so it was straight to Kingston, just after she and Ann had got back from the days chemo session at Marsden. Kiera doesn't show any signs of being unwell, slightly tired but she says she's fine, and there doesn't seem anything untoward as far as her blood results are, so we hope that it's just a blip and that she'll be able to carry on with the chemo as planned.

The second round of chemo got underway on Monday, following the pattern of the first round. A week on two drugs, then a week on one and a week to recover. It's an up and down thing, and the last few days has seen Kiera at a bit of a low. Tired for most of the time and today she had a temperature spike at 38.2, which gave some cause for concern. However, the temperature has stabilised back to normal but it's difficult to know if she has an infection of some sort or if it's a side effect of the chemo. Her blood counts are on an upwards trend so we hope that it's just a blip. We cancelled our week at the Clicsargent holiday home, which should have been next week as K will still be on chemo. Hopefully, with everything crossed she'll be on the school trip to Isle of Wight on the following week.

I'm sure that many of you know that Kiera is saving up for her own Smart car. It was great being lent one for a week as a birthday present, but to be able to drive it was not possible...until today! Courtesy of Mercedes Benz World at Brooklands, Kiera was taken out in a Smart car and given her own one to one instructions on how to drive, and then let loose! She had a great time! It was even better when Ed, her instructor took her out on the handling circuit and skid ring in an SLK to show her what a car with power could really do! Thanks to every one at Mercedes Benz World for making her so welcome,treating her to her own special driving lesson and the goody bag!

The parents of Rik, a friend of ours, are having a "Garden Day" on 26th May and would like to invite you to enjoy their garden, along with refreshments and a Tombola. The garden is at Lyne, very near to Woking. Entry is £3 and ploughmans lunches can also be booked. All the proceeds of the day will go to Momentum. If you'd like to go (and it's a beautiful garden), please e-mail rik@narla.co.uk for more details.

Well, Kiera's first cycle of the new chemo protocol ended last Friday and we are amazed at just how well she is! We looked up for all of the side effects that the new drugs can bring but she doesn't appear to be suffering from any of them! Yesterday, she and I walked around Kingston and she left her wheelchair in the car and managed with very little effort. We are so encouraged by her progress! Last Saturday the NCT group met up for a trip to The London Eye followed by lunch. A good time was had by all! On Monday, Ann, Kiera and I spent a night at "The Ritz", courtesy of "Action for sick kids". It was an out of this world experience and a real eye opener as to how the other half live. (Or the other 2% than own half of the UK). Thanks to the Play Specialists at Kingston Hospital for organising this for Kiera (and us!).

We'd like to thank Tina and Hannah and everybody who went for the meal at "The Wharf" a couple of weeks ago. Ann, Kiera and I are overwhelmed at the kindness that everyone has shown and to be honest, words can't say how grateful we are for every ones support and kindness. THANK YOU A MILLION TIMES! Knowing that we have so many friends behind us and supporting us really does make a big difference to the three of us. Kieras well being and progress is not just down to the medicine, it's a positive, mental approach which is boosted entirely by your thoughts and deeds.

 

Kiera and Bizzy had their joint birthday party for their classmates today at Painshill this afternoon. Despite an awful cough which we think is the start of a side effect from the chemo, Kiera had a great time and so did Bizzy. Hopefully, if you went, we hope that you enjoyed it too! Thank you to everyone who went and thank you also for the cards and presents.

Last week we found that the two part chemo protocol that K is following, is only two parts for the first week of each cycle. This means no fasting and we can get to Marsden earlier each day this week.

There are many people around the world who read this blog to keep up with Kiera's condition. I'd like to say a big "Hello" to my aunt and uncle, Bina and George and their family who are in America. Hope you are all well and many thanks for the recent photo's that you sent to me.

Once a year, the mums who met all those years ago at the NCT classes, meet up at the crocodile tree in Bushey Park for a joint birthday party for the children that they had. No exception this year, all bar one, present and correct! (It's not a "dad" thing!)

Despite the chemo, Kiera had a great birthday party on Tuesday. Thanks to all of her friends for coming and making it so special for her. Hope you had a good time! There is another joint party with Bizzy on Sunday at Painshill Park, where they'll all be pond dipping!

Thanks also to everyone for the cards, gifts and messages wishing Kiera a happy birthday.

The chemo is continuing and as yet it seems to be having little visible effect on her, she seems so well, but we know that soon it will start to produce the side effects that we are expecting. It was just so good that we could have a break over Easter and especially for her birthday.

 

Ann and K headed off to The Marsden for an 11 o'clock appointment. The chemo protocol is as new to the staff there as it is to us and there were a number of uncertainties as to how it should be administered. Eventually they decided that the first chemo, Temazolomide, should be given orally after not eating for 2 hours and then nothing for a further 2 hours. The second chemo, Irinitecan, is given by an infusion via Kieras Hickman line which will take about 2 hours to deliver and flush through. So the plan is for K to have breakfast at home and then 2 hours later have the Temazolomide, which is in a capsule form. Then we head off to The Marsden where the Irinitecan is administered. This is going to happen for 2 weeks, then a break of about a week then a further 2 or 3, 2 week cycles.

Well, we managed two nights away! Not far, just to a campsite at East Horsley. Thanks to Graham and Lesley for letting us borrow their motor home. Kiera had a brilliant time and it also allowed for her to get a reasonably comfortable nights sleep, apart from me snoring (apparently!). It was so nice for all of us to get away just for a while and feel as if we had actually been away!

So now back home and K is busy planning for her birthday which is on Tuesday, followed by a pond dipping party on the following Saturday.

Her headaches are unpredictable but seem to be easing off with the re introduction of the steroids. Ann called the Marsden on Tuesday but they've not called back so we are assuming that all is still going to plan and that the chemo will start on Monday.

Well, the chocolate fountain party was a great success! More chocolate than Willy Wonker was one quote I heard. Thanks especially to the wonderful Jacqueline Wilson who attended (at Kieras invite) and help the chocolate go down.

Today we were hoping to go to see Skating on Ice at Wembley, but Kiera has taken a turn for the worse, with headaches becoming more regular and one instance of being sick. So it was back to Kingston Hospital for a scan. I don't have the full facts so I can't tell you what is going to happen. K is back home but is back on steroids, which has always helped. She's fine in herself, currently icing a gingerbread house and tomorrow we're off in a camper van for a couple of nights away (but not too far!).

Oh, I nearly forgot (as I'm not allowed to drive it) On Thursday, Ann took delivery of a smart car, which Kiera is saving up for. It's an early birthday gift from Ella, Charles, William, Teresa and Lauren. So thanks to them for that. It's on hire for a week and the girls love nipping around in it.

More when we get back. Hope you all had a good Easter!

 

Well, it's certainly been a busy week so far! On Monday we visited the McLaren Technology Centre at Woking. Slight misunderstanding as the girls thought it was Mercedes-Benz World we were going to and were expecting to drive some of the cars. Not to be, as the least expensive car we saw was the Mercedes Benz SLR McLaren at about £350k! I certainly enjoyed the two hour tour and the girls did as well bearing in mind their disappointment. It was fascinating to watch carbon fibre being cut out by hand and laid onto moulds which would eventually become the front wishbone on the suspension of a McLaren F1 car.

On Tuesday, we were collected by a limo, not any limo but a rather large pink one! We were whisked to our hotel, The London Hilton and then on to London Zoo where we were met by Ayleen our guide. We were lucky to be taken "backstage" to meet some real furry animals and then allowed to feed giraffes! Later in the afternoon our limo took us to "The Rainforest Cafe" for dinner and then back to the hotel. This morning after a long leisurely breakfast we made our way back to Teddington. It was a really exciting and special time for Kiera, thanks to Rays of Sunshine for making it all happen!

Things lined up for Kiera include a chocolate fountain party, Dancing on Ice at Wembley and a few days away next week in a camper van. plus a few surprises!

She's been really well but getting tired towards the end of the day but making the most of things before the chemotherapy starts in a few weeks time.