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.

Just a reminder if you shop on-line at stores such as John Lewis, Amazon, Play.com and HMV, then please go to them each time via http://www.buy.at/radiohillingdon In doing so, you will still only pay the usual price for your goods but Hospital Radio Hillingdon will receive commission. Ta!

Ann and K had a great time fishing today as the sun shone! They went to the father of a friends house "somewhere near Andover" according to Ann, where Jonny taught Kiera how to angle! As a result K caught a couple of salmon and Ann three brown trout. They were all fortunate enough to be thrown back! Jonny has given K some of his old fishing tackle so no doubt we'll be off somewhere else with a lake soon. Thanks to Jonny and John for fixing it all up.

Mike Hamblin completed his 8.2 mile run in 62 mins 52 secs and has raised around £900 for Momentum. Thanks to him for doing it and to everybody who sponsored him. A fantastic achievement!

Tomorrow we're off to McLaren in Woking, then Tuesday and Wednesday we 're off to London Zoo. Next Saturday K has a chocolate fountain party so quite busy and hopefully we're not cramming in too much before the chemo starts!

 

Don't know if you've seen the film "Kinky Boots" but it's about a shoe making company in Northampton that, to make money, starts to make big boots for "men that dress as ladies". Well, it was based on a true story and the hotel I'm in as I write this was host to the cast and crew of the film. I'm in Northampton for the National Hospital Radio Awards, it's about 3am and I'm on a bit of a high after receiving the "John Whitney" award, which is presented to a person who has made an outstanding contribution to Hospital Radio. It's sponsored and decided by The Radio Academy so I'm really chuffed to have been only the third person to recieve it. Gerard Conway, also from Radio Hillingdon won the silver award in the best male presenter category.

I also had a chat with the Mayor of Northampton. Spent 20 minutes talking to him then asked if he could get me a ticket for the British F1 GP that's held in his county. Guess what? He doesn't even get one! What a waste of 20 minutes! Anyway a few pictures of me getting my award may appear here soon!

Nighty night!

Kiera continues to be in "good health". We really are surprised but pleased that she continues to be active and able to do things that a few weeks ago she couldn't. Today she went to the King Charles Adult Education Centre in Surbiton to do some pottery and throw some pots. You can see from the photo that she had a really good time. Thanks to Momentum for arranging this and also to Derek for showing how it should be done! We are taking advantage of her good health at the moment as, once the chemo starts on 16th April, her health will obviously deteriorate. On Sunday, while I recover from the National Hospital Radio Awards in a hotel room in Northampton, Kiera and Ann are going.......trout fishing!  While we're doing these things, Mike will be doing the sponsored run for Momentum and so far he's reached £760. If you're planning to sponsor him, please do so, don't put it off! Click here! It would be nice if we could reach £1000!

On Monday we're having a visit to the McLaren site in Woking (guess I'll go to that!), and on Tuesday Kiera has been granted her wish from Rays of Sunshine and we'll be at London Zoo. So lots to keep her occupied and of course, I'll let you all know how things have gone.

Have a good weekend and thanks for your continued love, support, kindness and best wishes!

 

Kiera had her last blast of radiotherapy to her head on Tuesday and yesterday had a bone marrow biopsy. The biopsy involved a general anaesthetic and then removal of bone marrow from her pelvis, through two small holes in her back which is still a bit sore from the op. Over the last few days she has continued to improve in her strength, morale and general demeanour and it's been great watching her draw, paint and do general arty stuff that's been beyond her capabilities recently. The radiotherapy is a gradual process and we hope that it's a good sign that she is making a recovery but there is still the chance that she may go "downhill" as it takes effect. Her chemo is scheduled to start on 16th April (a day before her birthday) but it will allow us to have some quality family time together over the Easter holidays.

Thanks to everyone once again for your messages and support. You continue to give us the strength to carry on. Thanks also to everyone who has sponsored Mike on his 10k run. There is still time to do so by visiting the "Just Giving" site. Momentum have some big plans to improve the life of children in Kingston Hospital and you can be part of it!

Well, just one more dose of radiotherapy tomorrow and then after a weeks break, Kiera will start on more chemotherapy. The chemo is being funded by our insurance company which is good news! For the last few days she has been exceptionally well considering the amount of treatment she's received. Over the weekend Kiera and some friends went to the flower show at Hampton Court and they all had a good time, but she does still get tired very easily, a by-product of the treatment.

So last radiotherapy tomorrow and a small bone marrow op on Wednesday is the plan for this week.

Thanks to all who have so far sponsored Mike on his run on 1st April. The target of £200 was beaten and last time I checked it was over £500. Don't forget that all the money raised will go to Momentum.

A friend of ours, Mike Hamblin, will be entering the Kingston Breakfast Run on 1st April and will use this to raise funds for Momentum. If you'd like to sponsor him, please visit his "Just Giving" site here and sign up. Thanks, Mike!

MONDAY 12TH UPDATE! Thanks to all who have generously sponsored Mike so far. His initial target of £200 had been smashed, but please don't let that put you off if you're still planning to sponsor him. Plus, Gift Aid makes is swelling the amount everytime someone signs up.

Kiera's radiotherapy is continuing this week. She's doing "fine" but the radiotherapy is taking its toll and she gets tired quite easily. The shingles have responded well to the treatment and we've heard that our insurers will cover the chemo treatment should the PCT not, so all is going as well as we could hope for.

A few weeks ago I mentioned that Kiera had taken part in a short promotional video for Momentum. That video is now on-line and can be found here. (It's 18MB, so a broadband connection would help!)

Kiera had her first dose of radiotherapy to her brain today. Although the actual process of delivering it is pain free, there's a rather uncomfortable procedure that she had to go through first, and that was to make a mask of her face. This involved a "U" shaped piece of plastic that had a plastic mesh across it. This was heated up in warm water and while she was laying down, pushed over her face and down past her ears to the table that she was laying on. The plastic was then fixed to the table until it was set and then she had to undergo various scans and an x rays. The mask was then marked so that the radiotherapy machine will concentrate in the same area each time. There are more details about how it's done, here. The radiotherapy will be over 2 weeks this time, and then there will be some chemotherapy, which will be different from the last. It will probably be taken by mouth and it is not a registered drug so our consultant will need to apply to the PCT for extra funding for it. We may also have to fall back on to our private health care policy for it, but that's a few weeks away, anyway.

Her shingles are clearing up and she has been eating for England! She's doing well! Tonight shouldd be her last night in Kingston.

Thanks to everyone, once again for the comments, it is really helping her along!