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!

This afternoon, Kiera was visited at home by Kim from "Save the World Club", a Kingston based charity who have been responsible for a lot of the wonderful mosaics that you see around Kingston. Kim and her colleagues have recently completed a wonderful mosaic at the entrance of the Children's wards at Kingston Hospital. It really brightens the entrance up and makes it more welcoming. It was arranged that Kiera would have a couple of friends over after school and they would create their own mosaic masterpieces. They all did a mosaic of their hand and Kim has taken them away to be finished off. Many of you will know that Kiera really enjoys this kind of activity so thanks to Kim and also Bianca from Momentum for arranging this diversion!

Kiera was due to have a bone marrow op tomorrow but that has been cancelled due to her shingles, which are responding well to the treatment. However, we'll still be going to the Marsden where her radiotherapy will be planned and, I understand, begin.

You wouldn't believe the afternoon that Kiera and her friends had today! Kiera had been told that they were going in to London in a mini bus, but that was a lie! They were met outside the school gates by a stretched limo and were ferried to the show in real style! They all received Mama Mia goodie bags and were treated like VIPs. It was so nice to see Kiera enjoying the company of her friends and it has made a real difference to her after all the recent bad news.

I would really like to thank everyone for this day! To Momentum and especially Bianca, to the staff and management at Mama Mia! and The Prince of Wales Theatre, to Wild Stretch Limousines and ichauffeur for providing the transport and to Mr Logan at school for allowing Kieras friends the afternoon off. Everyone was so kind to the girls and it has really made Kiera's day.

 

Thanks!

Kiera is back in Kingston hospital again. This time it's to treat a bout of shingles that have appeared on her arm and has been very painful for her. St Georges originally gave her anti biotics by mouth to treat it but they didn't work. Now she has to have an infusion through her Hickman line three times a day. The process takes about an hour and a quarter, so she can come out during the day...which is good news as it's Mama Mia tomorrow for her and 4 of her friends. In the meantime, she and Ann will spend the nights in Kingston.

 

Kiera's back home this afternoon, via Kingston where she had the staples in her head removed. Not too painful a procedure and soothed by the offer of £1 per staple, so that's probably the easiest £21 she'll earn!

She and some friends are planning to see "Mama Mia" in London on Monday afternoon, followed on Tuesday by a "Mosaic Party" at home with some friends and the team who are doing the mosaic in the children's wards at Kingston.

Wednesday it's off to the Marsden where she will have a bone marrow test, which involves another spell under general anaesthetic. Then later in the day she'll meet the radiologist where her next treatment for her brain tumour will be planned.

She's come home with more drugs than Boots which will see her through until the radio therapy starts. As for chemo, there will be more at some time.

It's been confirmed that the cyst on Kiera's brain is a tumour, in fact it's Ewings Sarcoma, the one that she had in her chest and had just finished an intensive course of radiotherapy at the Marsden. The Neurosurgeon at St Georges, Mr Stapleton has said that it is not in Kieras best interest for him to operate at this moment to remove it, as it would affect a substantial part of Kieras physical and mental abilities.

We've been told that it's extremely rare for Ewing's to move into the brain. Having spoken to the oncology consultant at Marsden today, we believe that there will be radiotherapy and chemotherapy involved in her treatment. We'll know more tomorrow. On the plus side, her bone scan has not shown up any problems and the tumour in the chest has responded well to the treatment.

Kiera is happy that she is not going to be starved for an op, and on finding out that it was Ewing's, she said "Well at least they know how to treat it!".

STOP PRESS! Had a text from Ann earlier this evening to say that they will be discharged from St Georges tomorrow (Thursday) and will be coming home prior to the start of the next treatment.

On Tuesday, Kiera started show symptoms similar to when she first had the cyst on the brain episode, so we promptly took her into Kingston, where a scan showed that the cyst was swelling and that there was some blood leaking as well. So she has been transferred to St Georges again, (she ain't chuffed!). Tonight we spoke to the duty neurosurgeon who has looked at the scans and believes that they will probably have to go in to Kieras head again and drain some more. They may leave a little tap there as well, just in case. Once Kiera was started on the steroids, anti biotics and pain killers, she perked up and was well enough to tuck in to a pizza.

We still have our meeting with the consultant on Wednesday, Ann will probably go to that while I look after K.

In the meantime, there is a picture of Kieras wound which is held together with about 20 staples. Kiera thinks it's funny that the surgeon who did them was Mr Stapleton!

Kiera and Ann arrived home this afternoon at about 4pm. Thanks to Jackie, Bizzy and Alex for bringing them back! Kiera is still in some discomfort as you would expect for someone who had neurosurgery just a few days ago but the quietness of our location, compared with a ward full of screaming kids, and the comfort of Moony her cat, will make such a big difference to her morale and recovery. Now we just wait for the biopsy result.

The last week has been really difficult for us and we all send you our thanks and love for the support that we've had. Thank you so much, it's been your thoughts and kindness that has kept us going.

Hopefully my next blog entry will be the result of the biopsy and what positive steps we'll be taking to get to the light at the end of the tunnel.

Kiera continues to amaze everyone with her recovery from yesterdays surgery! This morning, just after I got there at about 11, the drain was removed from her head and although she's heavily bandaged, she is now reasonable mobile. The surgeon came round and was so pleased with her that he thought she could be home tomorrow as long as her recovery stays on course, which really boosted her. He said that the cyst was about the size of a tangerine and that it must have been really bad for her. That's all behind her now, although there are still clips in her head that are keeping the bone and skin together. They should be out in a week or so. Now we just wait for the results of the biopsy before we know what form the treatment will take. We had a good run round the hospital in her wheelchair and fed the fish (again). The other positive thing is that the scans that she had on Monday didn't show up anything else, which we are relieved about!

Kiera went into surgery as expected at 10am and we were told it would take 2 hours, which it did! We met her in recovery just after mid day where she was in some discomfort and somewhat annoyed at having TWO cannula's in her arm. "Haven't they heard of Hickman lines?" was her complaint! She also has a drain coming out from her heavily bandaged head. As the afternoon progressed, both the surgeon and anaesthetist came over to check on her and they were both happy with her progress and the operation. We were expecting a 4 - 6 hour spell in recovery but this stretched to nearly 7 hours, by which time madame was climbing up the wall with boredom one minute and asking for more morphine the next. She has now been moved to a small 6 bed children's ward, much to her disgust, but when I left her at 8 this evening she was tucking in to pasta and complaining about the noisy football commentary coming from one of the other beds. Ann is a real star as well and will be staying with her tonight. Both the cannula's have been removed.

Tomorrow they hope to remove the drain and then we just have to wait for the result of the biopsy that performed this morning. It was mentioned that if she is well enough she may be able to come home until the analysis is completed. That will be a real bonus and fillip for her. At the moment though, we're in limbo. I'll be off to see them again tomorrow and I've printed out all of your messages for them to read. I really don't know how to thank you all for them, it really DOES mean a lot to us!

A reasonably quiet day for K with just one visit to the CT scan this afternoon. Bianca from Momentum visited her this afternoon which really perked her up and the some school friends came over. So we took the opportunity to go and feed the starving fish in the hospital pond!

Kiera is scheduled for her op tomorrow morning at 10am, so everything is crossed! Once again, thanks to all for the texts and messages, it's a real comfort to know that we have so many people rooting for us. I'm printing off all the messages left here and taking them in to Kiera and Ann. If you do leave a message, please leave your name as well as most people are coming up as "anonymous".

Ta!

While I was on the way to St Georges in Tooting, I started getting a shooting pain in my side and groin. Having experienced kidney stones a few times before, I rang Ann and told her that I was diverting to Kingston Hospital. By the time I got there I was in real pain. In the meantime, Kiera and Ann had managed to get some time out of St Georges and go out for lunch with Kieras Uncle Alex and Auntie Dianne. They came over to Kingston and the roles were reversed when Kiera and Ann came in to visit me in A & E. A short while later I went in for tests, an x-ray and some pain relief and I'm pleased to report that I seem OK now. I think I may have passed the stone as my water is no longer tinged with blood and there is no pain.

Anyway, back to the 2 ladies! I went over to see them this evening and K is quite understandably worried about the future. She is not suffering any headaches and so has been moved from the usual "emergency" slots in theatre set aside on Mondays and is now booked in for sometime on Tuesday. Monday will see her having more scans across her whole body area. The plan for Tuesday is to go inside, drain the liquid and then take a biopsy sample. We expect to know the result of that biopsy before the end of the week and that will form her next treatment.

Ann has been inundated with text messages of support, which we all appreciate. I hope you understand that it is not always possible to reply to them all as she has to devote her time to caring for Kiera.

I promise that as soon as I know anything, I'll post it here.

Thanks for your love, care and support.

 

Jeff

The latest is that it appears to be a fluid filled cyst which is probably malignant and will require draining. K has been told not to eat anything today (which makes her more grumpy than anything else!) as there may be some surgery later.

Latest at 11.25am. No op today! K is tucking in to breakfast (with a pizza delivery number on stand-by!)

I've spent the day with K and A, they've now been transferred to Nichol Ward, Rm 22 at St Georges in Tooting. K seems well but gets tired. Still no indication of what the problem is. K had an MRI scan this afternoon and the neurosurgeon was going to discus it at about 7pm but was called away on an emergency, so we're still waiting for the expert opinion.

For the last couple of days Kiera has been complaining of a headache, sometimes so severe that it woke her up during the night. This morning Ann took K to Kingston as she had also started to be sick. This afternoon, following a CT scan we were shown a dark patch that had appeared over a large part of half of her brain. We don't know what it is and of course it is worrying. K and A are in Kingston now and K is on anti biotics, steroids and anti-fungal treatment. The scans were biked over to a specialist and we're waiting for the next step, which could be a move to St Georges (oh joy!) in Tooting for further investigation.

When I left them this evening, K had picked up and was in bed, eating doughnuts and watching "The Lion King".  I will of course keep you all updated as we know more.

Love to you all!

Those are the words that Kiera wanted to hear today, and that's exactly what she was told. When she and Ann got to the Marsden, there were balloons tied to her sticker chart (she got a sticker for each day of the six weeks she attended, she didn't miss one!) and she also received some small gifts and a certificate signed by all the staff. It really does feel like another hurdle jumped! Now we have to wait for three months to discover what effect the radiotherapy has had, and in the meantime there'll be maintenance chemotherapy at three weekly intervals.

At the beginning, 6 weeks seemed like a long time, but now there's just one week left of the planned radiotherapy. Kiera is bearing up to it well but we can see some differences in her. She has been tired but managing to do at least half a day at school and continue to go to guides on a Friday evening, so a big thumbs up to her!