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!