First week at school - and a new start

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 users 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.

You'll find the new blog at...wait for it... http://elliottucker.net

Catchy huh? See ya there....

A Big Day and a New Chapter

Today marked a day that on too many times we thought we'd never see. Ciara put on a new uniform and went to school for the first time. We're all so proud of her, the brave little girl has been through so much yet she's managed to put it all behind her and bravely step into a new class and a new stage in life.



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.

I can't believe I've waited this long to post about last Friday!

As mentioned in the last post, last Friday was The Bubblegum Club's annual Garden Party at Durrow Castle. This is an event put on for kids in Ireland who've had a bit of a shitty time of it recently, and there were a good couple of hundred kids going. We hadn't told Ciara anything special was happening, she just seemed to be happy being away from her baby brother for a bit and have mum and dad to herself. While driving there, Ciara did ask if we were lost and if she could help find the way.


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?

Miss-fire at Summer Camp

It's been eighteen months since Ciara went to any kind of school. When she was 3, she started going to Athy's Montessori. One of the last days she attended was way back in December 2006, when she performed at the Christmas show. Little did we know that she was riddled with Cancer and must have been in a lot of pain. It was about then that I started keeping a record of what was going on and it's startling to re-read some of the emails I sent. Here's a quote from 7th Jan 2007, after spending most of Christmas and New Year in hospital and, of course, having no idea what was really causing the pain. We were told back then it was Irritable Hip!

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!

September is going to be interesting, she starts at big school in Athy, and being English in Ireland, I can't pronounce the school name - a good start! Ciara's good with other kids, all things considered, but I think it's going to come as a shock to her when other 5 year olds are doing 5 year old's things, as she's a bit short on 5 year old street smarts. She's a clever cookie though, and she'll work it out. If anything it will be tougher on her mum and dad.

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.

Long time no speak

Sorry it's been so long since the last post, the mundanaties of getting on with life rarely warrant a post. Here's a catchup though. Ciara's going from strength to strength and has tonnes of energy, more than her poor mum and dad can cope with. Her hair is slowly beginning to grow back, but at this point it's very thin on the ground. Hopefully the rest of the follicles will kick in soon.

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.

A Quick Plug to help the victims of natural disasters in China and Burma

In both China and Myanmar (Burma), entire villages and towns have been reduced to rubble, with thousands dead, wounded and homeless. With just one text message, you can help. In Ireland, text 'AID' to 57500 to send an automatic donation of €2.50 to charities on the front line. All proceeds to Irish Red Cross, Oxfam Ireland, Trocaire and Concern Worldwide.

Our company is running the service and we're keen to raise as much as possible to help the people of China and Burma.

Áine Casserley

Today we heard that sad news that nine-month-old Áine Casserley, the beautiful daughter of our friends Shay and Julie, lost her fight against cancer.
Shay and Julie were a tremendous support to all of us during our recent stay at Crumlin and inspired us all with their courage, strength and kindness. Our hearts and prayers go out to them, their son Liam, and all their family and friends at this awful time.

Very quick post

Just a few news items to be getting on with:
Ciara is continuing to do very well. Her freddy site went a little bit manky so she had a trip to the hospital to get that looked at, there was no infection or anything and a bit of anti-b cream was applied to prevent anything nasty coming along. All looks good now.

The last session of the Vit-A tablets gave her very bad skin and caused most of her face to crack and bleed. However she's been off it this last few days and already it's almost completely healed. It's amazing how quick these kids fix themselves. Also, her hair is coming along, albeit very sparse at the moment. Hopefully this should thicken up soon.

That's it for now. Longer post might be on the way, you never know your luck.

Sad News

Our thoughts and prayers go Neil and Tina Hughes, whose beautiful little girl Samantha passed away earlier this month. Samantha's fantastic blog linked here has been an inspiration to us during the difficult times. The World has lost some of it's sparkle now.

This month's check up

The whole family went to the hospital for a day trip yesterday. What a life! Ciara is still doing well as far as we can see. There's no scanning or MIBG type tests at the moment and there won't be for a good few months so we don't know of any cancer progression, fingers crossed there isn't any. The trips are just for blood tests and to make sure her marrow is doing what it should, and it sure is.

Her tummy is looking much better, considering it was only three months ago she looked like a heavily pregnant four year old. The doctor can't feel the liver any more through he belly, definitely a good thing! Unfortunately the pressure of the VOD (catchup: Liver disease caused by treatment) has given Ciara an umbilical hernia. Not a major thing, it's not causing her any discomfort. We'll keep an eye on it then later on, once all treatment is complete, we can think about surgery to fix it. It's purely cosmetic. Again, she won't be back in again for a month.

"Go on", you say, "give us another pic!". I aim to please all hypothetical readers: