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!

The radiotherapy continues but it seems to be affecting her recovery from the chemo sessions that run concurrently. She was due for a session a week last Monday but blood counts were below a required level. They're gradually improving and yesterday the Marsden called and asked for her to come in for chemo. The session is much shorter and the chemo seems less aggressive to the extent that her eye brows are starting to re-appear. Her progress is certainly encouraging!

The newly re-designed web site for Momentum has been launched. Lots of info and pictures at http://www.moment-um.org/index.html

 

Been a bit of a week this week. Although K appears to be fine, the effects of the continuing radiotherapy is taking it's toll. She's staring to get quite tired and her throat is hurting and if that wasn't enough she seems to have a bit of a cough and cold. If you don't have shares in Kleenex, get some 'cos she's going through them at a rate of knots! Anyway, nothing planned for this weekend so time to rest and relax before the fourth week of radiotherapy starts.

I've added a picture of what the radiotherapy machine looks like. Basically K lies on a table, it's lined up using lasers targeting small marks that were "tattooed" on her and the unit just rotates. A few minutes later the procedure is finished! Completely painless at source!

Today, Kiera and lots of other children who have been treated at Kingston Hospital took part in making a short documentary about Momentum, the charity based at the Hospital. The film will be shown at the Venetian Ball in February and will also be seen on The Community Channel (Sky and NTL/Telewest). Parents were also interviewed about how they felt when attending the hospital and how Momentum has helped them. Jacqueline Wilson was once again kind enough to visit and read to the children and be filmed. If nothing else, the hanging around and waiting has re-enforced Kieras desire not to follow in the footsteps of the other Keira from Teddington and pursue a career in acting! While she was there, Kiera had some blood taken as she's a few weeks since her last chemo and is doing OK. (This was also filmed!).

Well, either Ann or I have taken Kiera to the Royal Marsden each weekday since 2nd Jan and Kiera is a bit of an old hand at the radiotherapy malarkey! Straight on to the table, line up with the lasers and a few minutes it's all over. It's really strange watching this happen as there's no physical contact yet we've been told that it will result in the loss of 28% of her lung capacity at the end of the treatment. That sounds worse that it is as many people survive on just one lung! They've added a couple of extra days for the radiotherapy but this is normal. Kiera is remarkably well, all things considering. On Tuesday evening she went to see Kylie and enjoyed it thoroughly and continues to go to school as well.

        ***** VENETIAN MASKED BALL AND DINNER *****

 

                               FRIDAY 16^TH FEBRUARY 2007 (7.30PM)

 

                              LANDMARK ARTS CENTRE TEDDINGTON

 

 

Why not start of the New Year by planning a fantastic night out?  The Kingston-based charity, MOMENTUM, have joined forces with top West End theatrical events company, ACT ONE EVENTS, to arrange a fabulous VENETIAN MASKED BALL AND DINNER.  Tickets for this one-off event would be ideal for a special occasion or to entertain clients.  Why not buy a whole table?

 

The evening will be truly spectacular (as you would expect from a company who have worked on renowned stage shows such as MAMMA MIA!)  As you arrive at the Landmark Arts Centre in Teddington, you will be ushered into the stunning gothic interior of this former church, which will be completely transformed into a Venetian ballroom!  As you sip your complimentary champagne cocktail, you will be entertained by a live 12-piece orchestra!  You can then relax and enjoy a four-course banquet, after which you will have the opportunity to bid for fantastic, Italian-themed ‘lots’ in an auction, under the expert gavel of a Christie’s auctioneer.

 

Then dance the night away.  A glittering night to remember!

 

THE VENETIAN MASKED BALL AND DINNER will cost £70 a ticket and they are selling fast.  There are also a limited number of V.I.P. tickets available, seated on a raised platform in the Chancel, with a fabulous view of the evening’s proceedings and a complimentary bottle of champagne per pair of tickets.  These are £100 each.

 

Most important of all, all proceeds from this memorable evening will go to MOMENTUM, a registered charity supporting children with cancer and other life threatening conditions.  MOMENTUM’s next project is to completely redesign and re-equip the playroom and the teenager’s room in the paediatric unit at Kingston Hospital, which admits children from all over Surrey.

 

DRESS CODE – BALLGOWNS AND BLACK TIE (OR EVEN TAILS!)

 

 

To reserve your tickets please call 020 8255 0945

or e-mail contact@moment-um.org. 

 

We accept debit and credit cards.

 

www.moment-um.org

Registered charity no.1106677

Happy New Year to you All! We had a splendid Christmas and New Year without any need to go into isolation, which was our biggest fear over the festive period. On 2nd Jan, K went to Marsden for her next dose of chemotherapy and also to start her daily dose of radiotherapy. Understandably she was very nervous about this new treatment and it kept her awake for a lot of the night of the 1st Jan. But she overcame her fear and today she had her second dose before returning home with Ann. The chemo is quite low dose so we're hoping that she'll be staying away from Kingston over the next few weeks.

The radiotherapy is given everyday and K attends as an outpatient. It only takes a few minutes to administer and the real bug bear is going to be the daily "commute" but obviously it's all worthwhile! At the moment she's doing a backwards jigsaw and singing "Kung fu fighting", so perhaps the side effects of the radiotherapy are already showing!

Well, Christmas came and went and apart from a slight temperature on the morning of the 25th, K has stayed remarkably well. We all had a great Christmas Day at home and we were joined by our friends on Boxing Day. Today we went to the cinema to see "Zoom" (no, I'd never heard of it, either) however K enjoyed it. Made better by the fact that we were the only three in the screening!

We really happy that we've managed Christmas at home this year, with no hospital visit. It's possible that K has got over the worst side effects of the chemotherapy, that and the fact that it's a lower dosage. Next week sees another session of chemotherapy over 2 days and the radiotherapy will start on 2nd Jan 2007, every day, five days a week for about 6 weeks. It's going to be a strain, as it's done on an outpatient basis at the Marsden, but it does mean that the light at the end of the tunnel is, we hope, getting closer and brighter.

So, hopefully this is the last blog of 2006. We wish you all the very best for 2007!

It was a great weekend for all the family, with presents being exchanged and opened as if it was the 25th! On Monday we were all at the Royal Marsden for a kidney function test and also to have a planning session for the radiotherapy that starts in the new year. They have put three very small black dots on her which the radiotherapy scanner will line up on each time to ensure that the same area is being zapped! The dots were done by placing some black ink on her and then a small pin prick, just like a tattoo. School is now over and we don't know what lies ahead over the next few days. Going on past experience we estimate that there is a reasonably good chance of being in the isolation room at Kingston over the Christmas period, in fact the 25th is a good bet. We'll just have to wait and see.

I've said it here many times but once again, THANK YOU to everybody who visits the site to check up on Kiera. The support, love and affection has really touched all three of us. The past 12 months has been an emotional roller coaster, from the highs of Australia and Hong Kong, to the lows of diagnosis and the effects of treatment. But it has been made easier knowing that we have so many friends close by and around the world supporting us and thinking about us. Thank you so much! We hope that you all have a very Merry Christmas and that the New Year will bring you all that you desire.

K's blood count was low on Friday so on Monday morning a nurse called to take some blood and have it checked. It had gradually crept up over the weekend and so Monday afternoon saw K and A heading off to the Marsden once again. Whilst the Marsden are excellent in their care, they don't seem to be all that good in communication and it transpired that the treatment would be just over 27 hours, not the longer duration that we expected. So, A and K are back home now, a day earlier so all is well. We're having Christmas Day part 1 on Saturday when K's Granny, Grandad, Uncle and Aunt will be here so she's looking forward to that. And of course lots of other things happening as we head up to the end of term next week. Have a good weekend! More news as and when and a few recent photos of K are added to the photo section.

K came out of hospital yesterday and is fine but still need to finish her course of anti biotics, of which the last is this evening. She went to school today along with her cycling proficiency badge and her achievement certificate to show her friends. Tomorrow it's of the the Marsden for a few tests then a weekend at home with a 3 day stint at the Marsden starting on Monday.

After a really good weekend, K's temperature shot up over Sunday morning and so she and I went into Kingston on Monday morning at about 5.30. We're really encouraged that the seventh dose of chemo, which is a different regime from the original 6, hasn't hit her as hard as previously. No sore mouth and other effects which has blighted her in the past. Ann is with her at the moment and we hope they'll both be out tomorrow or Thursday at the latest. On Friday it's off to Marsden for pre chemo tests and then the 8th session starts on Monday. K would like to thank everyone who has left messages on the blog for her, she really appreciates it!

Every year our local council, London Borough of Richmond upon Thames, host an awards ceremony in which a child from a local school is nominated for their achievement. This year by a unanimous vote, the teachers at St Marys and St Peters School decided that Kiera should be the recipient. Today she received her certificate from the Mayor of Richmond at the ceremony at The Stoop, which is where NEC Harlequins play. We're very proud of her! That said, tonight she's tucked up in bed in Kingston Hospital after developing a bug in one of her lines, but she hopes to be out tomorrow morning to continue her schooling and her cycling proficiency award. Photos are on the left!

K is doing well at the moment. She went back to school yesterday and on top of that has started on her cycling proficiency badge. She was so pleased to be able to ride her bike again, after such a long time of not having the energy to do so. It's all in short bursts and she still gets tired easily but it does encourage us all.

K and A got back from Marsden yesterday. K is well but is requiring a top up of anti biotics every now and then. The first was last night at 11pm, so she and I stayed in Kingston overnight. More later this afternoon and we'll see how it goes from there.

It was going to be oh so easy! Chemo on Monday, Tuesday and Wednesday, then into school Wednesday pm for the knitting club! But not so! K took a bit of a dislike to one of the chemicals that they pump into her which resulted in a bit of a hairy day. She got out of bed and lost her balance and her hands went into a kind of spasm. It seems that this is one of the know side effects of the drugs but usually occurs the first time it's administered. This was the seventh dose so it just goes to show that we can't take anything for granted. Anyway, they pumped her full of some "blue" stuff which seemed to sort her out and this evening I went over to the Marsden loaded with clean clothes and her favourite food (paste). (Tin of peeled plum tomatoes, 2 slices of bread, grated cheese and and egg. Put in blender, blend then gently heat. Pour over pasta etc). If she continues on the up they should be home tomorrow, however, there is also a slight chance that one of the Hickman lines has an infection so that might need some visits to Kingston. As far as long term is concerned, we've been told that the next course of action will be radiotherapy starting on 2nd Jan 2007. As far as I know, this will be a series of daily visits to Marsden as an outpatient, Mon to Friday, over a number of weeks. Plus it's also possible that chemo will continue as well.

(Happy birthday, Dad, wherever you are!)

Kieras 7th session starts today, 20th November. It's shorter than the usual as (I assume) that it's a stop gap while the consultants consider the next course of action now surgery has been ruled out. Since coming out of Kingston K has got better with each day and Ann and I both think the week "off" of chemo has done her good. She's been back to school, been to London and a party. All things that a girl of her age should be doing!

Funny how a week on holiday in Hong Kong goes quicker than a week in Kingston Hospital! K was released this afternoon and is as fit as can be at the moment although she has to have a daily infusion of anti biotics. Her next chemo was due tomorrow but that's not going ahead for the time being. Tonight she's having a sleep over with a friend (she insists!) and Ann and I are off to the Momentum Opera at the Landmark Centre. If you're going, hope you enjoy it! Thanks again to everyone for their support and messages, it's a real comfort to know that we have you as friends and relatives!

This has not been a good week for K! The usual anti biotics haven't worked and there's not been a real clue as to what is wrong. She's developed a number of sores around all the her mouth and bottom area. The codeine side effects are constipation so you can imagine the distress she's been in. Yesterday they changed the pain killer so hopefully that problem has been addressed. Ann had an appointment with the Prof at the Royal Brompton yesterday. He will not operate to take any of the tumour out. He said that it would be too invasive for what he could actually achieve (we're talking opening up the chest cavity as they do with heart patients). "Put it this way, I wouldn't do it on my daughter" were his comments. So that just leaves chemo and radiotherapy. Today K has gone to the Brompton for a series of scans and when she gets back to Kingston a CT scan is booked in. I must admit however that this morning she was sitting up in bed, colouring and drawing and in little discomfort. I've no idea when she'll be out, her count is up as they've put her on the same medicine as she had prior to the stem cell harvest which also seems to have helped her, so sometime soon, I hope!

K & A are still in Kingston. K's temperature is all over the place for no apparent reason. Yesterday she had and x-ray which showed no problems and so it's more down to more blood tests to find the reason. K's next chemotherapy, while longer term decisions are made  is scheduled for 13th to 15th November.

Wearing my other hat as Treasurer at Hospital Radio Hillingdon, I'd like to ask you to visit our web shop if you intend to buy Christmas presents on line this year. Shops include John Lewis, Amazon, M&S, Play.com and hundreds more. If you go to www.radiohillingdon.com and click on the link, or bookmark www.buy.at/radiohillingdon then every time you make a purchase, Hospital Radio Hillingdon receives a commission. Subsequent visits to any of the shops need to be made via the web shop at www.buy.at/radiohillingdon for commission on your purchase to be payable, however there is NO extra cost to you. Having been with Kiera in Kingston Hospital and the Royal Marsden, I know what a difference Hospital Radio makes to patients, so please support us as and when you can! Thanks!

Not too bad a week this week with just a blood and platelets transfusion on Thursday. K managed to get to last nights firework display at school but took a turn for the worse over night resulting in a visit to Kingston hospital. We're hoping that she'll be able to come out for the evening so that we can go to our friends bonfire and firework party. No doubt it's going to be at least another 48 hours before she's well enough to come home.