In other news, Ciara’s Hickman Catheter (”Freddie”) is being removed tomorrow afternoon in an emergency op.  It’s looking manky and smells a bit.   It was due to come out in December but they booked her in to have it done on Finn’s 1st birthday!  Not fair, so we cancelled.  We were still waiting for a new appointment when she started getting temperatures.  She’s had a nasty cold of late with a hacking cough and we were thinking that was the cause, but after a weekend with no real drop in temp we took her in.  She had a chest x-ray to see if all was clear and it was, so not too much to worry about.  It’s a good thing really as we’re getting it over and done well before Christmas.  She’s spending tonight in the hospital and I’m staying with her.

She’s in fabulous form though, she looks great, has tonnes of energy and is really enjoying life.  On Saturday, her school had it’s 50th anniversary of the opening of the building.  The school itself was founded in the mid 19th century but the building is “new”.  She sang along with the other Junior Infants while dignitaries planted trees and stuff.  All very sweet.  Photo’s “will follow”.

Couple of other updates:  Ciara’s lost quite a bit of hearing following the chemo.  That won’t be coming back but it’s not desperate.  She’ll have trouble hearing conversations if there’s a TV on or lots of background noise but as long as you speak up and look at her while talking she’ll be able to get away without a hearing aid.  Hopefully her class is going to be rigged out with auxiliary speakers to help her out.  That’s if today’s budget hasn’t put sway to that.

Treatments are now all complete.  She had a CT and urine tests recently.  All normal.

They’re happy with how things are going and she’s being booked in to have her Freddie removed.  While under, they’ll be fixing her hernia and tidying up her crazy belly button.  No dates yet but it should be in a few weeks.  Dr O’Meara says that she won’t need to see Ciara again until the new year.  It’s then that Yvonne and I will be making our decision about what final tests we want run.  If the cancer were to reapear, there wouldn’t be much they could do.  At the moment no news is good news, and we’re in no hurry to go hunting for news.

Ciara has just finished her first week at proper school - and has had a thoroughly good time by all accounts.  To mark this occasion, and to recognise that Ciara not longer uses a bed pan, and will soon NOT be bald, I’ve decided to migrate Bald Kids and Bed Pans into a generic Stuff blog.  I know Ciara is the most interesting thing about my family but it’s time to carry on with life.  Maybe Finn’s antics might feature, or some general stuff about things I’m interested or involved in.

Never fear…there will be plenty of Ciara news when it comes.

p.s., please excuse the layout while I fiddle around, possibly some more manly images at the top.

Even though school has only just started, she was the new girl today as most of the other kids started last Thursday. The delay was caused by us not knowing if she had a place or not - she’d missed the deadline for enrolment - however a letter from her consultant had secured her a place. She’s going to Scoil Mhichil Naofa, a big ol’ Catholic school, about a million times bigger than the school I went to as a five year old and Ciara will be there now until she goes to secondary school many years from now. I think it’s going to take some time for her to get used to it - she only reluctantly agreed to go back tomorrow - but I reckon she’ll get in to it soon enough.
Ciara did her part at her aunty’s wedding last month when she was the flower girl. Aunty Annie asked her to be her flower girl last Summer, a time when Ciara was very unwell. Like the first day of school, Ciara being the flower girl at a wedding seemed so far away and yet the day came round and Ciara shone. We could never have hoped that Ciara would have been so healthy and happy on the day.

Ciara wasn’t the only offspring of mine at the wedding. Finn turned up too - he didn’t think much of it.

There’s one thing that really presses Ciara’s happy buttons, and it’s something she rarely gets to have a go on, and that’s bouncy castles. When we got to Durrow Castle, Peter Harris of the Bubblegum Club found us and walked us down to the party, where there waiting at least six bouncy castles! Nothing could get in the way of Ciara getting on those castles…apart from Jungle Dave! He had many baby dinosaurs that Ciara needed to look at (lizards to you and me) plus all manner of snakes, tarantulas, scorpions and other wild creatures. But after the lizards, and the donning of the t-shirt and name badge, Ciara was off on the castles. After being drenched that morning in Athy, we were well prepared with wellies and umbrellas. We’ve had such rubbish weather this Summer, but we were blessed with a beautiful (well, dry at least), day in Durrow.

After about an hour of castles, clowns, balloon animals and magicians, we made our way down to a playing field adjacent to the hotel grounds, where waiting for us were seven or eight helicopters. Ciara was at the front of the queue and couldn’t wait to get up, and after some larking around with the clown Gardai (did you hear about the garda who lost his arm in a helicopter acident, it happened when he reached up to put the blue light on the roof), Ciara was off to her helicopter with her mum. The helicopter she was in was a five seater but as it was fully loaded with fuel, the pilot wanted to just carry four people for the first trip, so I stayed behind to film the take off and landing. Watching eight helicopters start up and take off at once at close range is quite a sight and got my heart racing. It easily made up for missing the flight and I’ve already been on one anyway so no great loss. Ciara loved the flight and would have been happy to fly around all day. While Yvonne also enjoyed it, I think she was glad to return to terra firma.

Back up to the party and more castle bouncing, lizards, clowns, etc. Ciara took a couple of spins in the go-carts, and turned out to be quite a good driver…when she was looking were she was going. All other manner of events were put on including t-shirt and mask making, a bucking-bronko and a laser quest type thingy. After a fab lunch and some face painting, a show was put on by a couple of fellas calling themselves the Other Brothers, who had a pretty cool act considering it was aimed at kids. During the show, the army did a helicopter flypast, scaring the crap out of most of us below, and a bit later the Irish Air Corp did fly past.

All-in-all a totally fantastic day the completely blew Ciara (and myself and Yvonne) away. The organisation involved in putting this on must be immense! It was such a successful (and dry!) day. Huge thanks go to Peter and everyone at the Bubblegum Club for putting on such as cracking event. After the party, we had a three and a half hour trip up to Warrenpoint, would you believe that Ciara slept in the car?

More photos here and a video to follow.

Ciara’s not been in too good shape this weekend. We thought she was on the mend last week but has been in pain for thursday,friday and saturday night and hasn’t got any sleep (and nor have we!). We decided to take her back in on saturday so packed bags for an extended stay in the hospital. They checked her over and reassured us that it’s going to take a good few weeks for her to recover and pain will go up and down in that time.

What a load of rubbish! We knew nothing. Well back to more recent times, a couple of weeks ago (FTR: 2/Jul/08), after waiting the six or so months required after her bone marrow transplant, Ciara went back to Montessori in it’s summer guise as Summer Camp. The plan was to get her prepared for Big School in September and to get her interacting again. We’d warned the staff there to alert us if anyone was sick as, even though she’s in pretty good shape now, Ciara is still vulnerable to things like Chicken Pox. The next day, we get a call from the school: one of the kids in her class has come down with Chicken Pox. Big panic! The last time this kind of thing happened, Ciara spent five days in hospital being given preventative medication in case she did get the pox herself. Ciara hasn’t stayed over hospital since February, it would be terrible for her to go back just because she’d gone to school!

It turns out it wasn’t so bad. I called the hospital asking what to do, expecting them to tell us to pack our bags. But no, her consultant is pretty happy with her progress and isn’t overly concerned. We were told start watching for signs after 20 days, Chicken Pox’s incubation period, and to tell them if anything shows up. Unfortunately, the case was not isolated at the school so they advised her to steer clear for the time being. So, she’s had one half day at school in 18 months!

This Friday is a treat day. The Bubblegum Club, who organised last year’s trip to London, are holding a Garden Party this Friday (18th July), with lots of cool and groovy things going on - she may even get a helicopter ride. Will post photos and vids of the day of course.

We’re still struggling to get food into Ciara. Her appetite has been shot recently and her weight is on the way down again. Not nearly as drastic as before, she just needs a little more padding. Check ups are still at once a month, and she’s still on the Vitamin A capsules two weeks on, two weeks off. The bloody stuff doesn’t half make her face sore and she looks pretty ill when it’s in full flow. While on a recent and very stressful shopping expedition, a shop assistant said to me (full Essex accent) “‘as she got measles?”. The poor girl picked the wrong moment to say that to me and I shot back “No! She has cancer!”. Slam! I saw the blood drain from her face and felt a tincy bit sorry for her so had to turn on the chatty-charm to back-track, I hope I didn’t ruin her day too much.

Ciara had her birthday party last week. Had a fabulous day and it was lovely to have everyone round the house. The weather held out pretty much so most of the time we were in the garden. She had a whale of a time and looked the business. Much as she did the weekend before at her aunties wedding, also a fabulous day. After those busy weekends, this one is very quiet. She’s asleep on the sofa, Finn is asleep upstairs and I’m finally getting round to some non-Work related computer work - uploading photos, writing blog posts, re-arranging my iTunes for the imminent arrival of my previously-lost iPod.