Ciara is due to go to London on Tuesday for a special Bubblegum Club Trip. To be able to fly her platelets need to be above 50. If she's at 40 on Monday, they can transfuse to bring her up, but 40 is the limit. She was 23 yesterday, but she's only 24 today! She's due to start shooting up any time now but it's a tense time. Only three nights to go up by 16 points!
We will find out her levels again on Monday.
After a few administrative balls up yesterday, Ciara had her scan WITHOUT the general anaesthetic. There was lots of waiting around and confusion amongst wards as always happens when other departments are involved. I had a bit of a rant at one point, saying how unfair it was on Ciara that no one seemed to know what was going on. Of course it was just me getting annoyed, I don't think Ciara could have cared less. She's quite resigned to this kind of thing now.
We won't know the results of the scan for a while but as far we know everything is green for surgery on september 14th.
In other news, Ciara has been nominated for a Bubblegum Club treat. They arange special treats for seriously ill kids and we're trying to sort out her treat for before surgery. As she's a big dinosaur fan, the club are going to try and arrange a trip to London to visit the Natural History Museum. We're hoping to go on the Eye and take a boat trip as well. Aparently it would be all sorted for us and we just wait to be picked up from the house!
Will keep you posted...
Tomorrow I'm taking Ciara up to Crumlin for a split function kidney test. This is to determine which of her kidneys is the least knackered before they go rumaging around on Surgery Day (14th Sep). The idea is that while they try to remove the tumour they see the kidney is in a mess, they would remove it, but they need to make sure that it's not the only functioning one.
The scan tomorrow involves another radioative dye injection. This of course means that Yvonne can't be around for a while, the rest of the day at least.
Ciara finished her last chemo on Sunday and we came home to a beautiful new garden courtesy of our folks. We're hoping to have a chance to enjoy it this weekend.
The chemo went pretty much without a hitch, no sickness at all. She did have a temperature spike last week though, but a day later it was identified that one of her freddie tubes had got a bit of strep so she's been up and down to the Portlaoise with her mum all week to get that sorted. We found out today that another tube has got an infection of some sort too, so Ciara and Yvonne are off to Portlaoise again this evening for a new culture and antibiotic shot.
Tomorrows scan will be a bit of an experiment for us. Previously Ciara has been terrified on the scanning equipment and had to be given a general anaesthetic everytime to keep her still. However recently she has been even more terrified of the GA so tomorrow we are going to try without. I'll have to explain it to her tonight.
After the scan I don't know what's happening. We're just counting down the days before surgery and hoping that and tests being done at the moment allow that to go ahead.
Time for a shameless request for stuff: At the end of September, Ciara will be going in for a bone marrow transplant. This involves a monstrous 4 to 12 WEEKS in isolation where she is going to be very sick and very bored.
This will happen about two weeks after she has surgery to have the tumour removed. So all in all, a very tough couple of months requiring a huge amount of shrink wrapped entertainment. So if you are feeling even more generous than you have been already, send Ciara something from her new Amazon wish list. It's a very dinosaur related wish list, but then she's a very big dinosaur fan.
Ciara's Amazon Wish-List
Note:We've chosen Amazon because DVDs come shrink wrapped. While she's in isolation everything has to be new, this includes clothes, toys and books.
Anyone who's seen Ciara recently comments on how, erm, lively she is. She always has so much energy and at certain points of the day she goes completely insane. I think we've managed to pinpoint it to marshmallows. One or two of them and she's running around making a noise like a gremlin and literally climbing the wall. While it's fun for a few minutes watching her screech and squawk around the house it does get a bit tiring, so we need to ween her of the marshmallows. Could always bring them out again as a party trick though.
Ciara had day one of TVD #3 today. It was a day trip and went well. Took a while to actually start the chemo but she was happy enough watching Winnie The Pooh and the Halloween Heffalump three times in a row!
We've been given a surgery date of 14th September and there will be lots of tests again between now and then I guess. Some renal tests are on their way this week to see how her poor wee kidneys are holding out.
Ciara's levels came up quick enough and we were able to ahead and do the second stem cell harvest today. Getting the canular in her hand was very stressful, the poor thing screamed the place down and fought to stop it happening. Once it was in it went well and she won't need to go in for a second day.
It's now been decided that Ciara is going to have a third TVD chemo session before she goes for surgery. Not too disappointed about this, if it can get rid of the last 1% of non-tumour cells then it's a good thing. Apparently when her first MIBG was done, the cancer cells lit up like a Christmas tree and Dr Breathnach said he'd never see it so bad. Now, after her recent MIBG, you can hardly see anything at all! All very positive.
She's off the 'zappy pen' until after chemo so it gives her a break from the nightly injections. Next week's chemo will be day trips from Monday to Thursday and she'll be admitted on Friday for the weekend treatment. Back home hopefully on Sunday.
Yesterday we heard from the Hospital that the recent tests showed significant improvement. A huge reduction in cancer cells and only a small amount of non-tumour cancer left. The surgeon is happy to go ahead with surgery as soon as Ciara is fit enough. Before that happens, another session of stem-cell harvesting will happen but again, we need to wait for Ciara's various levels to be high enough to continue. This generally means her producing her own haemoglobin and platelets again without relying on a transfusion.
Last weekend Ciara was a bit down in the dumps, she had a bit of a cold and was getting understandably upset over the amount of times she's had to go in and out of hospital. Not many people can relate to having a general anaesthetic on Thursday, only to have another one on Monday. I can imagine how pissed off I'd be if it was me. Ciara had been wetting herself quite a bit recently and we've asked the psychiatrist what he thinks of this. He reckons it might be related to the treatment as it happens so quickly. It's often a case of Ciara saying "Oh No!!", then it happens. We'll have to check it out with the docs (note to self).
Monday was a long old day and I can't imagine how tiring it must be for the poor wee lamb. Never the less, the following day she was up with the larks and raring to go and she must have loved not having to go anywhere. The weather has been kind to us this week and we've managed to get out and about, and we found a new playground last weekend. We've already been there twice and I reckon we'll be off there tomorrow too.
We got the results for the MIBG on Monday and it shows that while she's not down to just the tumour yet, the secondary tumours are reducing.
There are no results from anything else yet but we will post when we know.
