Bald Kids and Bed Pans

First week at school - and a new start

2008-09-06T01:46:00.003+01:00

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

2008-09-01T23:05:00.005+01:00

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!

2008-07-24T23:59:00.004+01:00

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

2008-07-15T23:35:00.006+01:00

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

2008-06-21T16:36:00.007+01:00

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

2008-05-26T13:18:00.001+01:00

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

2008-05-21T14:28:00.000+01:00

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

2008-05-15T09:20:00.002+01:00

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

2008-04-24T21:26:00.002+01:00

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

2008-04-24T08:52:00.003+01:00

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:

Quick post...

2008-04-22T10:09:00.005+01:00

...as I'm at work (ssshhhh).

Please sponsor my Sister in Race for Life, in aid of Cancer Research UK.

http://www.raceforlifesponsorme.org/buggyworkout

And to prove I'm not all take-take-take, here's a picture of Ciara taken the other while we were on a dinosaur hunt. Alas, all we could find were fossilised brontosaurus bones (or tree roots if you have no imagination). You would not believe her energy levels and Joie de Vivre:

Click image if you want a bigger image to print.

Not back for a month

2008-04-04T16:06:00.002+01:00

Ciara is doing well. Doesn't need to go back in to the hospital for a month. Looking good, putting on weight and her hair is growing back. Off to see her grandparents this weekend.

Thanks for all your donations

2008-03-24T09:35:00.004Z

The total raised for the sponsored walk stood at €9634 as of last week. On Tuesday, St John's Ward and Ronald McDonald House were presented with cheques for €4817. This is a tremendous amount and to put it in perspective, St John's told us that with it they can buy three new hi-tech beds for the ward to replace the old iron-frame ones.

I'd like to again extend a huge thanks to everyone who took part and those who donated, particular thanks go to Ciara's grandparents for organising the event.

Learning the ways of the force...

2008-03-04T23:36:00.006Z

We've had a good few weeks back home, trying to get back to some semblance of normality. Ciara has been doing so well: she's eating well, has lots of energy, and, most of the time, is in great form! We've only need to go up to the hospital once a week since we came home, and there have been no unfortunate incidents to report. It is SO nice have to just visit the outpatient's department (Haematology and Oncology Out Patients or HOOPS) without a stay in the ward, or even the day unit.

A couple of weeks ago we were told that Ciara wouldn't be a good candidate for radiotherapy as the risk to her liver and remaining kidney would be too high. The recent MIBG showed some "hotspots". They are small, and definitely less active than the last scan, but they are still there. At this stage we don't know if they will progress any further, and we can only hope that they won't. However, as the last urine tests showed, there doesn't seem to be any neuroblastoma activity as such. Now that Ciara won't be having radiotherapy, she has started on the next phase of her treatment, which is Vitamin A therapy. These come in capsule form, 8 a day for two weeks on, two weeks off, for six months. She takes them with no fuss at all, much to the surprise, and relief, of all. It dries her skin out quite badly and makes the corner of her mouth sore, so vitamin E is cream is used to ease it. She still looks fab though!

Her tummy is looking much better too, pretty much normal now and all the levels are good, so it looks like we've got the VOD licked. Only a month or so ago I was thinking we would never get rid of it, but Ciara amazed us again. She hasn't been sleeping too well, it's been taking some time for her to get used to sleeping on her own again, and she has bad dreams. I suspect this may be related to the fentanyl patch (painkiller) she has. We're weening her off this soon so we'll see.

Ciara now only has to go up to Crumlin every two weeks, and the "clean diet" was eased today to allow Ciara a very special, and much asked for treat. For the last two months McDonalds were "having all their ovens cleaned" so we couldn't go. Today, it would appear, they had finished cleaning.

2008-03-04T21:02:00.000Z

Just a quick note to say that we're all back home now! We were able to escape last Friday and have slowly begun to get some kind of normality back in to our lives. I can't thank St John's Ward and Ronald McDonald House enough for the support they gave us during the 105 days of our stay, having to look after ourselves will come as a shock. Also, the Tucker family sends a huge thanks for all the words of support, presents and letters we've received. In particular, thanks for all the Christmas presents Ciara received (where are we going to put them!).

Ciara's doing well and is in very good form, getting home was a great tonic for her. She's been eating well and that and the NG feed have got her back on her feet and looking fantastic. She still has a big belly from the VOD and we don't really know how long that's going to take to get sorted out. The MIBG results showed that there were some neuroblastoma cells dotted around, and in particular there were some near the kidney. We don't know if these are active or progressing and we probably won't ever know but for the time being at least, we're not seeing anything from the other results indicating neuroblastoma activity. Next week I think, Ciara will have another CT scan concentrating on the Kidney area to see if they can map a route for radiotherapy.

Today, Ciara wants to write her letter to Santa and put up the Christmas decorations. Only eleven months too early!

Been a long time...

2008-01-23T22:08:00.000Z

Well it's now been a few weeks since I last posted, probably the longest break since I started this but I needed a rest. No excuses now so it's time to update y'all on what's been going on since the start of the year. Since Christmas, Ciara's health started going downhill and she's only just started climbing out of the slump. She had an increase in vomiting which ended up with her not being able to keep a thing down, including oral medication. Basically her gut stopped working, she had a nasty session of pooing blood and then stopped going altogether. There's a few things that could have been behind this, gastritis and morphine being two causes, neuroblastoma another.

The days and weeks following Christmas were a bit scary, the threat of neuroblastoma was hanging around and it went to the top of list of possible reasons causing liver and gut problems. Ciara's temperature was spiking and urinary catecholamines test showed that while most of her levels were normal, there was a slightly higher than normal level on one of the counts. This was beginning to show a picture of returning neuroblastoma. On quizzing the consultant regarding the spikes, he did think that neuroblastoma was a probable cause.

After about week 1 or 2 of 2008, I was getting confused as to what we were treating; there seemed so much going on. What were we fixing today? Was it VOD? Gastritis? Malnutrition? Oh, and what was that other thing? That was it - the cancer. Priorities kept changing from day to day. With the liver condition (VOD) not resolving, a plan had to be made to include more aggressive treatment. A multi-discipline team came up with some kind of plan for going forward and it was looking likely that Ciara was going to need liver surgery to get on top of the disease. However, before we put her through this, we had the cruel task of finding out whether it was going to be worth it, or whether we were going to be sent home with a morphine driver.

So last week we started the full work-up of finding out Ciara's cancer position. First off there was another urine test, which would take a couple of days to come through. Then an ultrasound, followed by a CT scan, then bone marrow aspirates and a biopsy. Tests end this week with an MIBG (injection of radioactive isotope to show cancer cells under a scan). But before this, we needed to build her weight and strength up.

Her recent sickness resulted in Ciara's weight plummeting, with her body digesting itself just to survive. Her nasal gastric tube had to be removed a couple of weeks ago as all the vomiting had blocked it up. As she was pooling food only to throw it up again a few hours later it wasn't doing any good anyway. A strange thing happened as soon as it was taken out: she started talking about food. A new one was put back in the following day but as an experiment we removed that one too to see how she would get on feeding herself. She did very well, and managed cornflakes, cookies, the odd pancake, even some sausage and chips. She was also started something called TPN which is intravenous feeding.

Ciara had her bone marrow aspirates and biopsy under general anaesthetic last Wednesday. Just after she went under GA, she vomited. That night she was under very close watch and was pumped with antibiotics. She was extremely groggy and seemed very poorly, much more than is normal for a small GA like this. The risk of a lung infection from the vomiting was very high. Her heart rate went very high, she was peeking at over 40 degrees and her oxygen saturation was very low. We had an oxygen supply close to her pillow to help this out. I think the night would have been more scary if the doctors had told us how concerned they were. They did this the following day once she was out of the woods.

Thursday afternoons are when the oncologist have their Tumour Board to discuss patients progress and plan treatments. We knew that we would have to wait until after the meeting before we would find out anything from the results and we were expecting the worse. As ever, we leave it to others to say "Oh she'll be all right!". I think parents are excused from thinking this - it's called self-preservation. Nevertheless, the time came when Ciara's consultant came in...and gave us a list of good news.

First off, the ultrasound showed that the vein going through her liver, the one that flows the wrong way with VOD, had started flowing the correct way - a sign that the VOD is on the way out. What the ultrasound also showed, or didn't show, was any sign of neuroblastoma. Next came the CT scan. This showed that her gut was full of air, which would be causing huge pain and needed to be cleared before we got anywhere with the digestion. What the CT scan also showed, or didn't show, was any sign of neuroblastoma. Next where the urinary catecholomine results. They had gone down and were as near as dammit normal, that's normal as in you and me normal, not cancer patient normal. Finally, the biopsy showed one percent of what looked like old, benign cancer cells. Nothing active, nothing on the rise. So all good news there then So the only thing we are waiting on now is the MIBG, and the scan for that is tomorrow.

Ciara's girth has slowly been coming down, and while not constant, any economist would notice a downward trend. Over the last couple of days she's been perking up, and this evening I could swear she was putting weight on round the cheeks. Enema's and other interesting stuff seem to have kicked her gut back in to gear. The vomiting has stopped and it's been days since she was last sick for no reason. Her interest in food did wane so we had to put the NG tube back in last night. This caused her to be sick, but it certainly wasn't three days of milk worth (she's allowed to drink lots of milk), so something is working.

It seems the only question mark now is why she is spiking. That hasn't gone away and she's hitting 38.2+ nightly. Nothing has shown up yet and we are scratching our heads...

(Sorry Finn, footnoted again). Finn is doing great, he has a supreme interest in food. I'll cook him a steak tomorrow to see if that will satisfy him. He is the spitting image of Ciara when she was his age.

Seasonal Updates

2007-12-30T20:55:00.000Z

We've got a lot to catch up on since the last post. I've given myself a break from posting for the Christmas period and it means I've got a bit of a backlog to catch up on. In the last post I talked about how Ciara had the catheter removed. Well it took most of the weekend following it's removal for the leaking to stop but by Christmas Eve it had sealed up nicely. There is now a small protective patch that we can probably remove already.

She's been getting increasingly uncomfortable over the last few days and has enough abdominal pain to stop her achieving any kind of good mood. On Christmas Eve, it was a struggle getting her to be even a little excited and she couldn't get to sleep because of discomfort, Santa only had a 30 minute window to deliver presents. During the night there was blood in her poo - whether she was able to get out of her room on Christmas Day was now in question. As it wasn't a huge amount of blood, she was allowed out but if any more blood appeared, we would have to bring her back to the ward. Christmas Morning her haemoglobin count was low and she needed a transfusion but we managed to postpone this to the evening as a transfusion would have taken about 4 to 5 hours. We were over at Ronald McDonald House by 11am, where Ciara made the most of her extra 60ml of fluid she'd generously been allocated for the day, but she was pretty uncomfortable and didn't really get in to the spirit of things, and nor did anyone else for that matter.

After more talks with Ciara's Oncology, and now Gastrointestinal consultants, we found out that the blood in the poo (melena) could be caused by a number things. The GI doctor thought that Ciara had varices, which are like varicose veins in the oesophagus, but he didn't think they would be causing the bleeding as there wasn't enough blood. The varices would have been as result in the increased pressure caused by the VOD (veno-occlusive disease) but the bleeding could have been something else such as an ulcer or gastritis. The only way to be sure would be to perform an endoscopy. If during the endoscopy they found varices, banding of the varices would be carried out to prevent further bleeding.

The endoscopy was carried out on the day after St Stephen's day, under general anaesthetic and after a brief wait for platelets. No varices were found but there were signs of gastritis with blood oozing through the stomach walls. This oozing is either caused by the high back flow pressure from the VOD or just the clinical stress of long-term medication. The internal blood loss will need to be very carefully monitored as it is extremely dangerous. This brings me on to further discussions about Ciara's treatment. We had a good chat with Dr Capra on Friday and he is still in the belief that a conservative approach to treatment is the best way for now, i.e. sit tight. However, after a few more weeks, say mid to end of January, if no progress has been made, or if more complications arise from the VOD, we may be talking about liver surgery. This would be in the form of a shunt to allow blood to bypass a liver vein to reduce backlog. This is not a treatment of VOD - VOD will still be there afterwards - but it does allow us to reduce risks elsewhere. This kind of surgery is not to be taken lightly and is is a dangerous, one-way process. And then, of course, we have to fit in some cancer therapy as well.

As I said earlier, Ciara is getting more a more uncomfortable, and restless nights are the norm. It seems to be all gastric pain, the kind of thing a good poo used to sort out. It's getting harder by the day to make her happy, she's not interested in anything while in pain and the pain is breaking through the codeine. She's fed up and wants to go home. Before we had a mostly happy Ciara with the odd day of down and fed up. It's the other way around now.

Catheter Out

2007-12-20T19:42:00.000Z

After three unpleasant nights of having the catheter in Ciara's belly, it was removed today. Regardless of what it was designed to do, the thing did start leaking last night. The yellow, odourless liquid, soaked a few pairs of leggings and pyjamas just from walking around to Ronald McDonald House. Overnight a gause was applied to try and soak up any leaks. Today Ciara was given a seditive, which as usual didn't make her go to sleep, it just made her a bit drunk. At least this time she wasn't aggressive. The doctor snipped the stiches holding the catheter in place and pulled out the 12 inch tube. As a doctor-nurse-parent team, we then spent the rest of the day trying to stop fluid pouring out of the wound. If too much fluid is lost, even if it's useless fluid, the body will try and compensate by drawing good stuff from the blood system. A drop in blood pressure would cause serious kidney complications. So what would seem to be the obvious thing to do, being draining the fluid while the tap is in, is in fact a terrible idea.

Removing the catheter while so much pressure existed was a bit of a new thing so the doctor was trying different dressings to try stem the flow. We didn't want to wrap her up in a strong adhesive dressing as removing it would be very painful for Ciara. This attention to what could be seen as a minor detail impressed me greatly. For a few hours, we took turns holding a gause tightly against the wound. This stemmed the flow completely so we could see that pressure was more important than a water-tight seal. She now has a pad tightly secured with a bandage. Any fluid loss today was compensated by a drip and her levels and blood pressure are fine.

Throughout all this, Ciara was very co-operative, and a credit to herself. Even when lying on a bed soaked with fluid, with people fulling at dressings and pressing at wounds, she was helpful, kind of calm, and sometimes even courtious. She's asleep now but was in excellent for this evening; glad to be rid of that horrible catheter.

Back to VOD again

2007-12-17T16:59:00.000Z

Ciara had her pigtail catheter fitted this afternoon. Nasty looking thing that looks like part of a home brewing kit (or a heart plug to any sci-fi fans). She's asleep at the moment, thankfully, as it has caused her quite a bit of pain.

The liquid drawn off was clear so it's definitely not chyle. Earlier, the ultrasound finally showed signs of actual VOD, namely backflow on one of the liver's veins. So we are back to treating as VOD again. She did manage to lose some weight and girth over the weekend so hopefully that will keep up. I'm yet to find out if they will use the tap to draw off liquid or if they'll let her body do the work. Either way the catheter will be removed after a couple of days.

Pigtails and parties

2007-12-16T20:47:00.001Z

There was a change of plan over the weekend with regards to using the heavy duty diuretic Metolozone. Ciara was given this for Thursday and Friday but on advisement from nephrology she had no more. Regardless, she has lost a small amount of weight and her girth is down a little bit, so her body is managing to do some of the work itself. Tomorrow, under anaesthetic and following an ultrasound, Ciara will have a pigtail catheter inserted, designed to stop leakage when inserted and to allow controlled drainage of fluid. This important as Ciara's abdominal region is under a lot of hydrostatic pressure; we don't want her whizzing around the room as soon as anything gets plugged in. From the catheter, a small amount of fluid will be drawn off and analysed. There is a possibility that Ciara could have chyle leakage as a result of her tumour surgery. Chyle is a milky, fatty substance produced in digestion. If Ciara's bloated abdomen turns out to be chyle, then we would need to reduce Ciara's fat intake to help heal the leak. If after further analysis we are still unable to identify the cause of the fluid build up (ascites), then we will move to a transjugular liver biopsy on another day.

It's too early to be worrying about this now, but reducing Ciara's fat intake is going to be tough. Even though she is heavy, she is so thin. Her arms are like sticks and her face is very drawn. I know she's been increasingly image conscious too, and most of the time photos are out of the question. Today though, Ciara came over to Ronald McDonald House and agreed to a group photo. Volunteers had put on a Christmas Party at the house; turkey, wine and Santa included. It was a lovely afternoon. Unfortunately Ciara couldn't join in with all the fun as she isn't allowed into crowded rooms full of germy kids. Not that she would have wanted too though. She's become quite insular and we have a huge amount of work ahead of us to bring her out of her shell. She does one-to-one very well though, but is pretty nervous of crowds. Instead, we all stayed in the R-McD's TV room, with her mum, grandparents, Aunty Annie, Tony, and her new little brother.

In the weeks and months leading up to Finn's birth, Ciara had pointed out repeatedly that she does not want a little brother and didn't like babies; they cried and made a noise. She even offered him up to a nurse, asking if she would like to take him home. Luckily for us Finn is as good as gold, and crying is soon resolved by applying a simple clean-feed-burp-cuddle algorithm. Ciara met Finn for the first time yesterday afternoon. She went from not wanting to be in the same room as him, to picking up his dropped hippo for him in the space of a couple of hours. Today Ciara even tip-toed up to Finn and stroked his hand, making my heart go squelch. While still nervous, she's getting there, and went so far as acknowledging he was part of the family. The bribery, and spending all possible moments with Ciara on our own, seems to have paid off.

VOD Update

2007-12-14T08:19:00.000Z

One of the team grabbed me last evening and told me they had been talking to nephrology - kidney people - who have experience dealing with a condition called Nephrotic Syndrome. Ciara doesn't have this but they have experience treating the excess fluid it produces. They have advised seeing how a heavy duty diuretic called Metolazone acts over the weekend before going down the surgery route. Fingers crossed for gallons of wee over the next few days.

VOD taking a grip

2007-12-13T11:11:00.001Z

The stubborn VOD is refusing to go anywhere and now it appears to be getting worse. Ciara had an ultrasound the other day and I could see on the screens huge black areas, indicating fluid. As far a the liver goes, the scan showed that it appeared the same as it did a few weeks ago. It seems to be doing the right thing; they check the flow direction of fluid through a vein, and that seems correct but the increase of fluid has caused a swelling of the pancreas. Over the last few days there has been a steady increase in Ciara's weight and girth. This morning when I lifted her I nearly put my back out; the increase in weight since the day before was so much that I hadn't compensated when lifting. She is getting increasingly uncomfortable and had a very troubled night. Amazingly she is in pretty good form, though she's not happy that the nurses have dressed up as characters from Snow White, and wants the dwarves to take their beards off.

The liver specialist visited yesterday to discuss where to go next. It's obvious that the defibrotide is not doing its thing, though she is still receiving it. He - along with the oncology and surgical teams - will be discussing options for diagnosis and treatment. Diagnosis will be in the form of a bioposy involving sending a device down a main vein from her neck, down in to the liver. Here a tissue sample will be extracted and pulled back up the vein. This is not a procedure often carried out in paediatrics and Crumlin do not have the expertise, so outside help will be required.

Treatment consists of puting in a tap to allow the fluid to drain off, plus some very strong diauretics to keep the fluid off. Both diagnosis and treatment involve risks. Certainly oncology will frown on the idea of an abdominal tap due to the risk of infection. Disucssions will be happening this week but I've been told not to expect news until next week. In the mean time, fluid intake has been drastically reduced and Ciara's oral allowance has been halved.

In other news, Finn has been put on antibiotics. He had a little episode on day two where he stiffened up and went grey. He was choking on mucas that hadn't cleared from birth. He was quickly rushed off to be cleared and revived and everything was okay. The whole episode lasted seconds and later he was given a stomach washout. However, while the paediatrician was checking him over, she noticed that his resting heart rate was a bit slow. An ECG indicated mild bradycardia - slow heart rate - so they took bloods for tests. One level indicated an infection so he'll have five days of antibiotics. This extends Yvonne and Finn's hospital time by a couple of days so they should be out at the weekend. Back to Ronald McDonald House. Unfortunately, due to a winter vomiting bug, the only visitor Yvonne and Finn is allowed is yours truly. Even his grandparents aren't allowed to visit.

Finn Joseph Tucker

2007-12-11T10:20:00.000Z

Born 10th December 2007 at 6.36am.

Welcome to the family dude!

Turning a corner

2007-12-03T19:26:00.000Z

Yesterday, Ciara's consultant, Dr O'Meara, told Ciara she's getting better. She thinks she's definitely turned a corner and is on the road to recovery. While the abdomen and weight is still up, Ciara's general fitness is improving. We've managed to take he over to Ronald McDonald House a couple of times too.

Last week there was still a question as to whether she had VOD, or something else. An SOS was sent out to a liver specialist - Professor Bourke - on Thursday. We were told Friday morning that he wouldn't be available that day as he was at his mother's funeral and it would be inappropriate to bother him. Unbelievably, he arrived at Ciara's bedside Friday afternoon after getting the message Thursday. After an examination he was confident that Ciara did indeed have VOD and that just because it didn't tick all the boxes, didn't prove that it wasn't VOD. To strengthen that position, the urinary catecholamines came back normal as expected.

Change of photo subject for this post. Our stupid cat, who was staying with Yvonne's sister, has been hit by a car. She'd been running feral around our house for the past nine months, and a few weeks of care and attention at Anne-Marie's had made her go soft and lose her ability to cross the road without badly breaking her leg. She had no pet insurance, and funds being tight meant we had to...take her to the vets and get her fixed like any other human being would have done. Had ya worried!! Ciara must of heard us talking about Coffee as she asked if she was still alive. Thanks to Anne-Marie for sorting the cat out and Coffee is getting on well with the splint. Stupid cat.

Update: Forgot to mention, Yvonne went for a check-up today, all looking good for sometime this week.

Scan results

2007-11-29T09:44:00.001Z

Ciara's ultrasound and CT came up clear yesterday. Liver is working well but is still a big bruised lump. No visible signs of neuroblastoma either. Ciara was brilliant for both scans. The CT in particular must be very scary but she was very brave. Don't get be wrong, she didn't enjoy it but she stayed very still throughout.

There was a bit of a scare yesterday when we were asked a for a sample for a urinery catachelomines test . The nurses asked for the sample after the scans, so the initial thought was 'My God! What have they seen in the scans?'. It later transpired that the test was ordered before the scans and was all part of building a picture of Ciara's present state. Too late to avoid a major upset though but its not their fault. They need to do what they need to do without needing to calculate the effects on our imagination each procedure might have.

We will get those results today but we expect them to be normal.

CT scan today

2007-11-28T09:21:00.001Z

The VOD is being stubborn. While we may have caught it early a couple of weeks ago it doesn't seem to be going anywhere. In fact her weight and abdomen size went up again yesterday and we probably don't have long to go with the difibrotide treatment. At about 10is she will be having a CT scan. We are trying this without sedation today but if that fails it will be under general anaesthetic tomorrow. The scan is to try and identify if there is a fungal infection and to make sure her little kidney is doing what it should be doing. She hardly weed at all last night so that can't help.

After a good weekend of Ciara being in a fantastic mood, she's been back down again for the last couple of days. We need to wake her up now to get her ready for the scan. Off to charge the cattle-prod...

Ooh! 200mls! The luxury...

2007-11-21T22:29:00.001Z

I can't start to imagine how thirsty Ciara must be. The VOD has her whacked at the moment and she's sleeping a lot, but when she's awake, all she talks about is drinking. The other day I found her listing drinks and ticking them off with her fingers, whispering to herself: "orange juice, hot chocolate, milk, strawberry juice (!), water..." I think she wanted them all at once. Later while walking past the nurses desk, she noticed a cup and paused mid-step. "Excuse me," she asked, "but what's in that cup?". "Oh, erm, nothing", the nurse stammered diplomatically. The only time she comments about something on TV is when someone has a drink in their hand. I know that I for one have never been as thirsty as Ciara is now.

Her abdomen had been going slowly down over the last couple days and so on Monday she was allowed 200mls of fluids orally over a 24hr period, up from 100. Unfortunately this didn't last and her abdomen started creeping up again. So today she's back down to 100mls. A temperature spike had the doctor round last night, and Ciara complained of a sore throat, but this didn't seem to go anywhere and the throat could have been thirst related. Today she had an abdominal xray and ultrasound, primarily to determine the progress of the VOD but also to see if there where any signs of fungal or viral infections that could be causing the spikes. Nothing obvious apart from the large fluid build up and engorged liver. Her liver functions are remaining pretty normal at this point though. I don't know if this is a good or a bad thing. Perversly, good liver functions could be a bad thing as it may indicate something else causing the problem. This is my own speculation though and probably baseless. Dr Capra seems happy enough with her progress though, so we will go by that.

Later in the day, Ciara received a visit from Infectious Diseases, on the request of her consultant. Ciara was asleep at the time but all credit to the doctor, he got her sat up and was able to carry out a full examination without a major tantrum [from Ciara]. I was very impressed! He went off to chat with Dr Capra about how to proceed and I guess we'll find out tomorrow the outcome of those discussions.

We were talking with Ciara today about her cat, Coffee, who is on holiday with Auntie Annie. She said: "When my holiday is over, I can see her [Coffee] again." I told Ciara that she wasn't on holiday, that holidays are much more fun. "Yes, I don't like this holiday, it's horrible". Well said.

Sleeping it off

2007-11-17T16:52:00.001Z

A quiet few days are ahead of us while Ciara's body fights the VOD. She's been sleeping a lot, and while awake, she's pleading for a drink. She can't have more than 100ml of water orally over a 24 hour period while we try and reduce the fluid build up. This is very tough, and now and then all we can hear from her is a quiet "water....water...." like some kind of Foreign Legionnaire. But she gets a "special treat" of half an ice cube every few hours! Wow!

She's not looking too well either. The skin complaint, while clearing up, has left her with scabs all over her bald head. She's gaunt too, with big dark patches under her eyes. Around her right eye looks like she's been in a fight, looking bruised and bloodied. She's very thin as you would expect and she's wobbly on her feet in the rare moments she wants to walk about. Not much cheer in her either. In fact, if you look up the word "grumpy", or "cantankerous", you may find a picture of Ciara.

The other day, before she came down with VOD, she was allowed out for a while. We took her to Phoenix Park to see the deer. It was a glorious autumn evening, bright and fresh...and Ciara wanted nothing to do with it. Admittedly it was creeping past "fresh" and in to the realms of "bloody cold", which may have had something to do with her desire to get back to her room. She allowed no pictures, but I broke the rules...

"I won't be in today. I'm waiting on either bad news or terrible news"

2007-11-15T16:56:00.000Z

Today we would find out if Ciara had Veno Occlusive Disease or whether the Neuroblastoma had returned. The wait for Ciara's consultant to come round this morning seemed like a year. We were due to go and talk to someone this morning about Radiotherapy but that has been put on hold, pending a talk from the consultant. She arrived at 11am, and already her language was starting to change; with talk of "making Ciara comfortable", and still using radiotherapy to "slow things down". But before she could say for certain that it was Neuroblastoma, we needed the results of the urine tests. After the night we'd had, this seemed like just a technicality, and reminiscent of a time back in March when we waited for urine results to confirm that our world had been turned upside down.

At about 4.30pm, after a long day of pacing, the urine catecholamines results came in, this time delivered by Ciara's other consultant. Contrary to what Yvonne and myself had led ourselves to believe, they were lower, i.e. better. This doesn't rule out Neuroblastoma, but it does indicate that it's now unlikely to be the cause of the liver swelling. She's still not classic VOD though - she will be screened for other problems, such as fungal infections or hepatitis type diseases - but for now treatment will continue for VOD, with continuing defibrotide and increased diuretics to release some of the fluid build up. Next week she'll have a CT scan to try and work out what the pains in her legs are. We knew that there is still Neuroblastoma left, and she'll be having an MIBG soon to map where, but it seems that there is no rampant return of the cancer.

So, we make it through another day. This is not really a huge "phew" moment, but it's not the end of the world. The pains in her legs are still a concern, but no more than they were a few weeks ago. I have no doubt in my mind that if the catecholamine levels where up, we would have had the "getting our affairs in order" talk. While VOD is still very serious, and potentially fatal, the glimmer of hope has returned again. To quote oneself from May 28th: "Only this morning, in a very glum moment, we were talking about making the most of the time we have. Now we can hope for a future again. Thank God."

2007-11-14T16:06:00.001Z

Don't want to talk so I'm just going to post.

Ciara's abdomen swelled slightly on Monday and she had some weight gain. I raised the alarm as we are worried about Veno Occlusive (liver) Disease. It fluctuated over the last 36 hours but by this morning it was looking pretty certain she had VOD.

However she's not presenting with typical symptoms. While it may still be VOD, there's a real chance the Neuroblastoma may be back. We will find out tomorrow.

I won't be sleeping much tonight and I doubt I'll be the only one. Sorry.

Flaking Away

2007-11-10T16:16:00.000Z

Ciara's skin is getting worse unfortunately and she's been bleeding all over her bed clothes. It doesn't help that she keeps scratching at herself. The lab reports on her skin came up negative to any bugs so it's looking like an after effect of the chemo. Plenty of paraffin gel should sort her out plus this excellent silicon dressing the skin nurses gave to us. Very hi-tech stuff that's really adhesive yet comes away easily (!) and doesn't leave any residue.

Unfortunately her temperature has been spiking again. It went up to 38.2 this morning and has ruled out a trip to the park at least for today. Maybe tomorrow though. She'll need more cultures taken including a needle in the hand. Not fun.

Up and about

2007-11-08T04:07:00.001Z

Ciara has been getting out of her room for a few hours over the last couple of days. There's a conservatory of sorts attached to the transplant unit that gives her a change of scenery. Unfortunately it's currently wrapped in builder's polythene so the scenery is a bit stunted. Nevertheless, she's up on her feet and plodding around now and then. She's still complaining of sore legs when she stands, possibly neuroblastoma hotspots that will need to be targeted with radiotherapy in the next phase of her treatment. This phase, however, is going very well. Her consultant insists that Ciara gets up and dressed everyday now and thinks that if all goes well, Ciara could be out as early as next week. To start with, we plan to take her to Phoenix Park at the weekend to give a much deserved breath of fresh air.

She's getting various skin complaints at the moment, from sore bum caused by diarrhea, to ithcyness caused by a yet unknown alergic reaction. The consultant dermatologist will be seeing her tomorrow but in the mean time she gets a good slopping of vitamin E cream. To add to her discomfort, she has thrush in her mouth and a UTI. To lighten her day though, the teacher has been visiting again now Ciara is up to it. I think a trip to the park will also lift her spirits no end.

(In other news, baby #2 still on plan for Dec 9th. Scan on Monday shows that he could be a bit of a lump. Mum doing well but sore and tired.)

While She Was Sleeping

2007-11-02T21:55:00.000Z

Ciara has spent much of the last seven days either being sick or sleeping. From Friday to about Tuesday she can't have spent more than a few hours awake. Then, a couple of days ago, she started perking up. Her numbers are up, she stopped being neutropenic on Wednesday, and today, the strict isolation has finished! That's what a good few days of sleep does you.

I can't believe it really, her recovery is much quicker than I thought it would be. She's still being sick, but the diarrhoea isn't so bad and she's sitting up more and chatting (and being cheeky) like the good ol' Ciara we know and love. Tomorrow we'll be taking her out of the room if she's feeling up to it, but there's no rush.

Halloween came and went for Ciara without much fanfare. She couldn't have too many decorations up during the build up, and we couldn't see any fireworks from her window, but she does have a light up (and wipe-clean) ghost in the room. This is the second year in a row without us spending a decent Halloween with Ciara. This time last year Yvonne was in St James' having her dodgy tooth removed. A very long twelve months, I can tell you that. Talking of Yvonne and hospitals, she's trying to hold Baby #2 in for as long as poss, but it's getting close!! Moses basket and baby clothes are up at Ronald McDonald House, just in case.

Which hospital shall we visit next then? Well first up, The Coombe Hospital for Women, then, let's see, St Luke's, for Ciara's Radiotherapy. That will do I think.

Stuffing well and truely knocked out

2007-10-25T02:06:00.001+01:00

Ciara has been feeling worse and worse over the last couple of days, with sickness and diarrhea taking its toll. Holding a sick bowl while grabbing a bed pan while holding in a nose tube while putting on gloves while wiping her mouth is quite a trick! She hasn't eaten anything for the past few days and today she's even had trouble keeping NG-fed food down. Ciara is now neutropenic - no infection fighting neutrophils - and her temperature has spiked today. But even with the sickness and diarrhea she is maintaining input so should be getting enough calories and fluid.

She seemed very down this evening but I did manage to get her to join in in a reading of We're Going On a Bear Hunt. She says she not sad, just not very well. Most of the time she just wants to watch a film or Walking with Dinosaurs and doesn't have the energy to do much else. We've been raiding newsagents for the crappy €2 toys you get there so she has something new to open pretty much daily. Today I bought her a magnetic fishing rod game. It gave her about 30 seconds of fun in the bath but did distract her from the fact that she was HAVING a bath.

She's been having a few aches and pains in her joints recently and this has caused some worry, however the consultant spoke to us at length about our worries and has eased our minds somewhat. Dealing with neuroblastoma is all about probabilties, and if he can tell us the likelyhood of this or that, while not ruling anything out, does allow us to keep our fears in check.

Our anxiety was triggered by a little girl who has just completed the transplant treatment that Ciara is currently going through. She's about Ciara's age and also has neuroblastoma. After spending a good number of weeks in transplant, she was able to go home a couple of days ago. However she was back in the unit yesterday after they discovered something on her liver. At this stage in her treatment it is a devastating development. Today her mum and dad were waiting on results of a rushed scan carried out last night and our hearts have gone out to them.

This has reminded Yvonne and myself of the game of chance we are unwillingly playing and the risks and possible outcome of the game. We are comforted though by the knowledge that after every good report, Ciara's chances of getting through the treatment greatly improve. I believe now that any bad luck we've had in the past was for a reason. We're saving up all of our good luck for when we need it most, and the lottery win will just have to wait for a few years.

Day 2+ and counting. Daleks, dogs, and mice.

2007-10-21T12:37:00.001+01:00

There was a huge buildup to the transplant on Friday and it seemed like we were set for a big day. Another view was that it would be a huge anticlimax. Being the eternal optimist I assumed it would be a huge anticlimax. In the end it was a lot more stressful than I had imagined. The day was split in two. At about 11am the room started getting crowded and more and more people started milling around. In the hall outside Ciara's room, a man turned up with an expensive looking machine that defrosts the stem cells. A little later he wheeled in something that looked like a quadraplegic Dalek. This was the cryogenic cylinder that held Ciara's stem cells, stored at minus 130 degrees.

Once defrosted they were administered intravenously into one of her freddies. The cell solution was very cold - in the past patients would suffer from frostbite - and Ciara screamed for the hour it took to administer the first batch, 'One Of Our Dinosaurs is Missing' just didn't distract her enough. She started feeling sick immediately but didn't actually vomit. After the hour was up she tried to rest but was feeling so sick that she couldn't sleep.

The next session started around 4pm and was a repeat of the first session except her movie of choice was Jurassic Park III. The running and screaming on the movie adding a unique element to the process. Again afterwards she felt very sick and looked absolutely exhausted, her big blue eyes looking very dark and tired.

After the hustle and bustle of the transplant, in the evening we felt a bit abandoned. Being the weekend the staff level was reduced, so the Bone Marrow Transplant unit only had one nurse on. The seems a bit damn stupid considering the situation. It would often take 10-15mins for someone to respond to the Call button if the nurse was on a break or dealing with another patient. Not the nurses fault of course as I'm sure they didn't plan the roster or arrange funding for staff.

Since then she hasn't really eaten anything and her mouth is getting very dry and sore. She can't keep anything down, including water, so she is relying on intravenous fluids and NG (naso-gastric tube) feeds. She is pretty quiet at the moment but does have giggly moments. She sang along to Paddington Bear's version of Singing in the Rain. No signs of VOD yet, she has her abdomen measured daily and a careful eye is kept on her fluid throughput and weight. All is normal.

After all that happened on Friday, what I needed most of all was to find out that our house had become overun with mice, the old washing machine wasn't taken away and the next door's Staffordshire terrier was roaming around our garden. Anne-Marie had gone to the house to pick up the cat, and was confronted by a large mouse in our hallway - stupid cat!. I went down with Kevin with murder on my mind and when we got into the house we were expecting bolshy looking vermin staring at us. But the only evidence we found was one mouse poo behind the loo. The house is now currently riddled with poison-baited traps so that should keep the bastards busy for a while.

After aranging to get the washing machine removed - which happened about an hour or so later - next up was the dog. While there was currently no dog in the garden, there was a gap in the fence, dog crap on the lawn, and a few of Ciara's toys had been chewed. After fixing the fence with Kevin, I went around next door to tell them I was off down the Garda station to arange for their dog to be taken away. "I'm currently LIVING in hospital with my daughter, who, as you may have noticed, has cancer. Can you tell me why I've had to leave her to drive down here to deal with your dog?". After about 10 minutes of arguing, and in the spirit of neighbourlyness, I gave him another chance, telling him if I see that dog trying to get through the fence again, even jumping up against it, I won't be coming round to talk to him, I would call the Garda and county dog warden and have it removed. Sorry to any dog lovers out there but tough, its a controlled dog and a known dangerous breed, however fat and friendly it seems. Our other neighbours have agreed to give me a shout if they see it trying to get through.

So today I'm spending as much time with Ciara as possible after being dragged away yesterday. Kevin and Anne-Marie are down at the moment and have sorted us out with lunch. Of course they can't come in to see Ciara and we asked her if it would make her sad to see them at the window if she couldn't speak to them. She said it would so we will wait until she can see them properly. She's asleep now, Yvonne is off having lunch and I've left my book at Ronald McDonald House! Thank God for this Blackberry.

The Force is strong in this one

2007-10-18T20:23:00.001+01:00

For the last few days Ciara has been in excellent form and has been having good fun. Well as good a fun as you can have stuck in here. She's been enrolled in the hospital school and on or other of the teachers has been coming in to see her daily. The first chemo drug she was on had no nauseous side effects. In fact the only side effect was from the sedative need to prevent siesures. The mad hyperactivity settled down after a while too.

A couple of nights ago, Ciara's cultural education progressed in a vital way when she watched Star Wars for the first time then insisted on watching it again last night! That's my girl! She calls the Death Star "Darth Vader's house". She needs to watch it a couple of dozen times before she's allowed to progress to The Empire Strikes Back. You can't rush these things.

Ciara came off the first of two chemo drugs on Tuesday and went on to the second yesterday. After a week of being full of beans, the come down was quite abrubt. She was sick last night and has had a very quiet day today. She looks more poorly today too and has been feeling sick. Her appetite has vanished and she'll be getting a feed through the nose tube tonight.

Tomorrow is the big day. Apparently it's a huge anticlimax as nothing really happens apart from the nasty smell. However tomorrow is the start of the strict infection control and clean diet. Mary is here now and has already been a great help. First of all she's giving me my first break from the overnight stay on the ward. Nothing to complain about though, one of the mothers has been in the transplant ward for nine weeks on her own!

I wonder if Mary likes Star Wars?

Mad as a bag of kittens

2007-10-14T22:00:00.001+01:00

Day -5, fourth day in, and she's still hyper. However, the sedatives aren't making her so beligerant and yesterday and today weren't so bad. She's still a serious handful though and totally exhausting! Ciara and I stayed up till 10 last night and that managed to tire her out enough to sleep through to 8am. She's started wearing nappies at night now as her poor little bladder can't cope with the gallons of fluids be pumped through her. She's not at all impressed but at least it means we don't have to run around in the dead of the night changing sheets.

Her weight has been fluctuating rapidly. Last night she was at 15.2, this morning back down to 14.7, and this evening back up to 15.2. Her weight has to be vary carefuly monitored as rapid gain could mean she has VOD. The fact that it went down again probaly meant she was just retaining some water and nothing to worry about.

Really strict infection control is not yet in place as she's not yet neutrapenic. . We're not wearing aprons or washing Big Ted everyday but we will start tomorrow so we can get into the habit. I've stopped walking around with keys and coins in my pocket as they are big germ carriers and we Azowipe everthing coming in to the room. Azowiping a newspaper probably wouldn't do it much good but the covers of books seem to hold out okay. An Azowipe, by the way, is the almost corrosive disinfectant wipes used in the hospital. Just thinking about them gives you clean thoughts.

We're getting an early night tonight. I've been in the room everynight as Yvonne, in her condition, wouldn't be able to get out of the camp bed in time for bed pan emergencies. As such I'm a bit of a grouch and appologies to anyone who happens to be on the receiving end. The lack of sleep is a small price to pay though as Yvonne will be trapped with the psyco child while I go to work for the morning. Tomorrow afternoon we will see how my laptop stands up to being Azowiped. Something IBM probably didn't cater for in their durability tests.

The Second Stigmata

2007-10-12T21:35:00.001+01:00

If hair loss is the first stigmata of the cancer patient, the nose tube is the second. Amazingly Ciara has been able to last most of her treatment without a tube. Until today, when she started the first batch of high dose chemotherapy Busulphan needs to be taken orally and at very specific times. There's no "I'll have it in a little while". When it needs to be taken, it needs to be taken. Plus it would taste disgusting, hence the nose tube. She is very unhappy about this, her tears have disolved the glue holding it to her cheek.

This morning the consultant told us some very good news, and some slightly moot news. First, her liver functions are excellent and she's in great shape for the treatment. Second, she's in the 50% of control paitients, i.e., she gets Difribrotide only if she shows symtoms of VOD. Not as bad news as it would have been last night when we thought she had poor liver function.

One of the side effects of Bulsulphan are small siezures, so they prescribe the sedative Clonazapan. Apparently "in a very small amount of cases it can cause hyperactivity". No shit! Of course Ciara is one of the very small amount of cases and spent the whole afternoon going spare while Yvonne tried to keep her from injuring herself. It didn't help the process of getting the nose tube in either. She's been upset since then and when she's awake she's like a bad-drunk and not in a funny way. It's actually quite disturbing. She needs the sedative for the next week while she's taking the Bulsulphan. During the rounds tomorrow we'll ask about alternatives, if any.

Last night was tough while we were getting used to using bed pans again. She's been through four sheets since last night! Not her fault mind, I'm just too slow and a bad catch to boot. Also, during the conditioning, there will be lots of different IVs and whatnot going in and out all the while so the night is not the best time for sleeping. Nor is the day for that matter.

She's asleep on a big LazyBoy(tm) at the moment. The giant chair was rolled in earlier today - one of the benefits of this unit being very big rooms. Noisy though. The air filters sound like the engines of a P&O ferry.

I missed the fun this afternoon as I went in to the office after lunch. I'll try and make it up to Yvonne over the weekend. Mary will be joining us next Thursday so things should ease up then too.

In the unit with finger crossed

2007-10-11T21:43:00.001+01:00

Ciara is now settling in to the high depenency unit and getting in to one of her new DVDs. Walking With Dinosaurs this evening. I can't remember who got that but if you are reading...thanks.

A couple of posts ago I mentioned that Ciara was going on a trial for a drug called Difibrotide to help prevent a liver disease called VOD. From what we understood, the trial meant 50% of patients would get the drug continuously while the other half would get it only if there were any symptoms. From what we hear, those who have it continously from the start sail through the treatment without getting VOD. However because of a lack of stats, they don't know for sure if it is the pre-treatment with difributide that is causing this or whether they just wouldn't have got VOD anyway. We previously thought that taking Ciara off the trial would allow us to pre-treat with difibrotide any way. This would be good for Ciara as her liver functions, while not bad, as yesterday's blood test revealed, aren't perfect either, and the chemo drugs she's going to be taking won't help that. Unfortunately the drug is not as profitable for the company as it used to be. There's not much of a market for paediatric drugs as it is and difribrotide is very expensive to manufacture. My heart bleeds for their poor shareholders. As such, the only way of getting the full treatment is the fifty-fifty chance of going on the trial. There's no other way of getting the drug short of actually getting the disease. (I wonder if they've checked on eBay).
So we're at the mercy of a trial manager in Italy tonight and we will find out in the morning if Ciara is one of the lucky 50% who can difribrotide from the start. So, fingers crossed again.
Yvonne has now headed over to Ronald McDonald House. The staff at the house have saved the best room for our time of most need. It's big, has both a shower and bath, plus a balcony! We can now sit out and watch the drunks stagger home and have a ring side seat for Crumlin's fine street fights.

In for transplant on Thursday

2007-10-10T13:54:00.000+01:00

We got the call yesterday to come in for the transplant on Thursday. One of the kids who was due in got an infection so it freed up a slot. All a bit of a panic now as we were expecting a bit more notice than that! I've taken today and tomorrow to get ready and try and get the house in shape, it needs to be spotless for when we return but we can always send an advance party when we know we're getting back. We need lots of clean clothes for the trip so of course our washing machine has decided to break down. I've said it before and I'll say it again; I must have really pissed someone off some time in my past.

We got a call from Crumlin this morning. Some levels related to liver functions are high and they wanted another blood test take. We popped up to Portlaoise this morning to get that done. They want her to have good liver function before she goes in as the treatment could give her liver a hit. I don't know if that means she might not ready to go in but we haven't been told otherwise so will just go with the flow.

On the way back from Portlaoise today, we made the most of the good weather by having a picnic in a playground. It's nice that it's a good day and she can have a bit of fun outside. It's going to be a good while before that happens again.

More details on High Dose Chemotherapy and Stem Cell Transplant

2007-09-28T13:30:00.000+01:00

Ciara underwent a number of tests over the last couple of days in preparation for the next stage in her treatment. The name of the procedure as a whole is Haematopoietic Stem Cell Transplantation (HSCT). It is a very risky and potentially life threatening procedure, however there are distinct advantages to the procedure that improve chances of long term Neuroblastoma survival.

This treatment is broken down in to the following steps:

Day -8. Conditioning

In a couple of weeks, Ciara will go in to the High Dependency Unit at St. John's Ward in Crumlin. She will be give a very high dose of chemotherapy consisting of the drugs Bulsulphan and Melphalan. These drugs destroy the bone marrow and will make Ciara very sick. She will have nausea, vomiting, a very sore mouth and diarrhea. The mouth can get so sore that morphine is often administered. Ciara will have a nasogastric tube almost immediately.

Over the next few days Ciara's blood count will plummet, risk of infection will be at the absolute highest and strict isolation will be put in place. NO ONE can visit her apart from myself, Yvonne, and a third person, Yvonne's mum. Once the white cells and platelets reach a certain level, called an aplastic state, she will be give the transfusion, which happens on day zero.

A possible side effect of the drugs is a liver disease called Veno-occlusive disease (VOD) which occurs in about a third of stem cell transplant patients. This is a serious disease and in extreme cases can be fatal. Ciara will be part of a clinical trial of a drug called Defibrotide. She'll either be on it constantly, or only if she shows symptoms of VOD.

Day 0. Stem Cell Transfusion

A couple of months ago we harvested healthy peripheral bloody stem cells from Ciar's bone marrow. These were put on ice in preparation for the transfusion. This is a simple intravenous transfusion that will go in to her freddie. A couple of the side effects are black wee, from red cells broken during freezing, a bad smell. Ciara will smell like rotting sweetcorn for a while! Transfusion takes about a day.

Week 1 - Week 6-8. Recovery.

Over the next few weeks, Ciara will require intensive treatment as a result of the severe and potentially fatal decrease in white cells and platelets. She will have a regular administration of antibiotics and will require a strict "clean" diet. Only myself, Yvonne plus Yvonne's mum can be with Ciara over these next few weeks. Mary, Yvonne's mum, is our "third person", an will be performing a vital role in Ciara's recovery.

During this time, we need to follow strict isolation rules. I've just read the guide and it says that we can't even bring books in for ourselves unless they're pre-wrapped and have a plastic cover after unwrapping. I've got a stack of books built up for the duration! I wonder if putting them in the freezer will help? Ciara's food will be prepared on-site and any food ciara particularly likes will be bought for her. Big Ted will need to be hot-washed DAILY! How will he survive that!

Everything's on the move and we're back home...

2007-09-22T23:40:00.000+01:00

...not much else to say! She's back on form and bodily functions are getting back on track.

Tuesday and Wednesday will be a days of tests, including a new one, an EEG, electrodes on the head, sleep analysis, that kind of thing. I have no idea why and wouldn't surprised if it didn't even happen. She had blood counts done over the last couple of days and her levels are higher than they've ever been (good thing) so I would expect the mega-therapy (high dose chemo) and transplant to be happening pretty soon. Will keep you posted.

Graphic Detail Alert!

2007-09-22T06:31:00.000+01:00

Ciara is feeling much better today and is nearly back to her normal self. Pretty chatty and jokey so that's good. She's started to make progress in the poo department too after the indignaty of a supository earlier (finally cleared by St John's) and has been eating and drinking well.

This was after a pretty tough night. The x-ray showed a large impaction of poo and she'd been vomiting lots and lots of bile. I noticed what looked like faecal matter in it at about 2am so she had to have a nose tube put to draw off liquid from her stomach. The tube was in for about an hour before she sicked it up again.

The vomiting stopped around 4am and she's been gradually perking up since then. Wee output is a bit low still, not helped by neither Yvonne nor I being good catchers, but depending on how well she does over the next 24 hours she should be out tomorrow night, fingers crossed. We are finally getting oral laxitive to work but it takes a day or so to have any effect as it tries to ballance out the system quite gently.

All sound pretty yucky when typing it but I seem to have become immune, I didn't feel squeemish at all! Bodilly functions are fascinating!

Xraying a poo

2007-09-21T04:07:00.000+01:00

We finally managed to talk to someone today who seemed to listen to our concerns. I told the nurse that the surgeons told us to get our GP to give her an enema. She was surprised at this and as I had guessed, this hadn't been cleared with Oncology. They don't want this to happen until she's been fully assessed in case we tear something or give her an infection. Good thing we checked! Yvonne and I are getting pretty good at this Cancer Parent lark.

So we're up at Portlaoise waiting for an xray and blood count. As she's not drinking properly and is vomiting she will be put on fluids as well. Her consultant at Crumlin will then decide what to do next.

Ciara is quiet at the moment, not her normal chatty self and thoroughly peed off. At least she didn't have to hang about in the very packed A&E. She had the red carpet treatment straight into her own room, complete with giant lava lamp, disco ball and jungle slides projected on the wall!

Not a great couple of days

2007-09-20T14:22:00.000+01:00

As mentioned before, Ciara was constipated before her surgery and managed to go the day after. That was Saturday and she has'nt gone since. She's been sore and complaining of pains all over since yesterday and on the rare occasion we can pursuade her to eat something, she isn't able to keep it down. This includes medicine, so she is currently without pain relief. She's slept alot as well, that is when she can get comfortable.

The hospital don't seem too concerned but it is upsetting. She hasn't complained of pain this much since before she was diagnosed, and so all the old worries and fears are coming back. I'm sure it's just constipation but we need to get it sorted nevertheless.

Her surgeons have suggested an enema. We're not sure if they checked with oncology whether this was okay, I'm guessing not, so we are waiting to here back from the hospital before going ahead.

Home again

2007-09-19T15:54:00.000+01:00

Ciara was back home yesterday afternoon after spending the night over with us in Ronald McDonald House.

On Monday night she was moved out of her own room into a two bed room sharing with a baby (12-18mnths so pre-toddler kind of thing I guess). Ciara is not a fan of babies and goes nuts when they cry and we told them this when we first went in. She will have to get used to crying babies in December, but in her own time, and not when recovering from major surgery!

Yvonne had the smart idea of asking if Ciara could stay with us for the night. This was ok by the surgeon so we packed up and headed over to RMcD House.

Back home yesterday she was pretty sore after the drive back and could only get comfortable in bed. She slept a lot yesterday afternoon and slept well through the night. She seemed pretty happy this morning having breakfast in bed though.

Up on her feet

2007-09-17T13:16:00.000+01:00

Ciara had a relaxing day yesterday and received some visitors. She was a bit sore in the morning but as the day progressed we were able to stop the constant morphine feed and have it set to demand only. She started eating yesterday too, starting with a few nibbles of toast and building up to coco-pops (bowl and bar form) by the evening. She's in great form too, and is starting to get quite chatty now.

Today she's been up on her feet and has managed to walk to the loo and back. There have been rumours of going home tomorrow but the are only rumours at this stage. The hospital school came round today and gave Ciara some homework to be getting on with. We're going to have a few weeks off now and it would be nice if Ciara was able to make a few visits to the local montesori to catch up on some peer fun. We shall see...

Out of ICU

2007-09-15T19:23:00.000+01:00

Ciara's now out of ICU and back on Our Lady's Ward. She's a bit croaky and groggy still but in good enough form. She's chatty now and then but is sleeping quite a bit. Epidural came out and she has a morphine feed at the moment.

We're slowly getting back to a normal Ciara-level amount of tubes going in. Normal being a tripple broviac straight in to her venous system. Our normals are definately abnormal. .

Earlier today they were concerned about her levels of pain and tension and were thinking she may be in for another night in ICU, but that was all sorted out once she managed to have a poo. Now I've been to the elephant enclosures at London, Dublin and Bronx Zoos, but I can tell you I've NEVER seen anything like this. No wonder she was in pain!

A comfortable night

2007-09-15T10:01:00.000+01:00

Ciara slept well and only woke up a couple of times to complain about a crying baby. She looked so sad and annyoed this morning when we went to see her, she broke our heart.

She started complaining of being in pain but it wasn't from the op. She's become constipated and this was causing great stress. She was given more painkiller that knocked her out and is going to have a suppository to give her a bit of relief.

She will have her epidural removed later today but will be given a crossover painkill beforehand. She will then be moved up to the regular ward.

Just finishing off

2007-09-14T17:44:00.000+01:00

Just spoke with the surgeon. All went well and they are just finishing off. He recons he was able to remove 99.9% of the tumour and what he saw was totally dead. Looks like the chemo did its trick.

She'll be in recovery for an hour or so and then in to ICU where we can give her Big Ted.

Just gone in to theatre

2007-09-14T15:24:00.001+01:00

Ciara is now in theatre and will be there for the next few hours. She had a pre med which made her go all hyper and giggly, followed by hyper and beligerent. I don't think they'll be using that med again.

Ciara is definately losing a kidney. Luckily the results of the split function kidney test showed that the one she's keeping is kind of behaving itself. Yvonne was expressing her relief at this to one of Ciara's oncologists, who then thought it was a good idea to tell her how risky the course of mega-therapy (intensive chemo) will be to kidneys as well as the rest of renal system. Crappy timing as it brought us both down. However we've always asked to be kept in the loop. That's the pay-off I guess.

After surgery Ciara will spend a day or two in ICU. We will be able to visit her but can't stay with her at night. That will be tough for all of us. Following ICU she will be back on the surgical ward for a while.

She went in looking so healthy and happy. I think it's going to be a while before we see her that chipper again.

Night before surgery

2007-09-13T19:07:00.001+01:00

Ciara is settling in to Our Lady's Ward, Our Lady's Hospital on the night before her tumour surgery. It's a different ward to what she's used to but it'll do.

Ciara's surgeon tomorrow will be Professor Corbally. We spoke to one of his team this afternoon who briefed us on what's ahead. We had to give consent for the surgeon to remove a kidney if needs be. It would appear that this is likely now but not definate. As the doctor said, if it needs to come out it needs to come out, even if the other one isn't fully functional, we'll just have to cross that bridge if we get to it.

It's a long and risky procedure and may take anytime from an hour to over three hours depending on what they find. Surgery will be around twelve tomorrow but that's not definate.

Ciara's immense energy levels are a great thing but we're exhausted keeping up with her. She's on the go non-stop from 7am to 9pm, now with no nap during the day. Musn't grumble though. Her energy is what makes her such a fighter.

Ciara and I are watching Jurassic Park III for the thousandth time. At least it's not Jurassic Park I, which we've seen a million times. Yvonne is off for a walk to have a break.

A big thanks

2007-09-07T09:10:00.000+01:00

A big thanks to everyone who has picked things from Ciara's wishlist. It's going to be a great comfort for her while she's laid up in bed unable to sit up properly. She's going in to surgery next week and it will be a couple of weeks after that when she has the bone marrow transplant. I will have to keep them well out of the way before then otherwise she'll trick me into opening them!

Thanks again.

Ciara's First Look at a Dinosaur

2007-09-07T08:40:00.000+01:00

This is the moment Ciara first set eyes on a real dinosaur (kind of).

(Cousin) Nick...if you're reading this, can you send me a message on Facebook so I can get your email? Would be quicker than going the asking-my-dad-to-ask-your-dad route. I tried an FB search but there are a millions of you!

And now...the pictures

2007-09-06T22:21:00.000+01:00

Here's are the pics from our trip to London. Click on the pic to go to the album, I hope you all enjoy them.

Ciara's Trip to London

Will post some vids in a bit. They take longer to edit and upload!

Back in dublin

2007-09-06T15:51:00.000+01:00

Just landed in Dublin. It took a while to get off the plane as Ciara had to say goodbye to the pilots in the cockpit. Last night she lasted until we got into the taxi back to the hotel at 9.30 when she crashed. She'd just had a 12 hour fun session with no nap and was just brilliant all day.

I'm going to take this opportunity to say a massive thanks to Peter and the rest of the Bubblegum club, Fiona, who took time off work so that Ciara could have a nurse along and who nominated Ciara for the Bubblegum Club treat, everyone at Jury's Hotels and especially the staff at Jury's Kensington and everyone else who mad.e it possible for Ciara to have the best trip ever. Words are not enough to say how grateful Yvonne, Ciara and myself are. The trip will make the tough times ahead a million times easier.

Thanks again,
The Tucker family

Slight detour

2007-09-05T20:54:00.001+01:00

We didn't go directly to the river cruise. We took a detour to have a go on a merry-go-round as demanded by her ladyship. We missed the boat because we had to play on a nearby playground and so we were able to kill time at the Aqaurium...which of course she loved to bits.

The boat trip was a big success and Ciara enjoyed shouting "echo" under all the brdges...

After a quick sprint round Hamleys we are sitting down to dinner at the Rainforest Cafe. She's just about to have happy birthday sung to her by everyone. Well it's only a little fib...

All of us with one exception are totally knackared. I think Ciara wants to go clubbing next.

Where to start?

2007-09-05T14:55:00.000+01:00

First off Ciara enjoyed a quick open top bus tour while we waited for the natural history museum. That went round a big block of knightsbridge and dropped us off back at the museum. Of course Ciara only had eyes for the dinosaurs, which she loved. It took us a while to convince her to see the animatronic t-rex. It was a bit loud and scary for her but she did poke her nose round the corner a couple of times.

After raiding the museum shop a ton of dino stuff, we went for a cup of tea in the museum members room. It would appear that Ciara is now a member!

After that we walked round to the science museum to see a 3D imax dinosaur movie. It was a bit painfull for me to have to rush past the space gallery and all the vintage computers...but I'm not here for me!

Just had lunch and are just about to take the bus to the river for a cruise...

Dancing in the aisle

2007-09-05T08:39:00.001+01:00

Ciara loved Stomp. I think the audience were more entertained by Ciara dancing in the aisle than the performance on the stage! We had to leave a bit early though as Ciara wanted her hot chocolate in bed. I guess there's only so far you can push a sick four year old in the pursuit of fun.

Ciara overcame her fear of hotels, or ho-tails as she calls them, once she realised what they were. While at breakfast we realised that this is Ciara's first stay in one. She keeps laughing at the small single serving stuff and tiny toothpaste tubes!

We'll be off to the natural history museum in about an hour, then the science museum, then lunch, then up the river, then maybe the Aqaurium...

Busy day ahead then...

Stomp

2007-09-04T19:33:00.000+01:00

Been up the london eye, eaten lots of candyfloss, and we are enjoying a beer on The Strand before going to see Stomp.

Ciara is not drinking a beer by the way.

Just landed

2007-09-04T15:36:00.000+01:00

We got to heathrow safe and sound and are sitting in a people carrier on our way to the hotel. Ciara enjoyed the flight and is now constantly shouting "we're going to the ferris wheel! We,re going to the ferris wheel!!"

We will be staying at Kensington Jury's and we have about thirty minutes to get rid of her new phobia of hotels!

On our way

2007-09-04T11:06:00.001+01:00

We're on a way to London! We're cruising along at 50km/h at an altitude of 3 foot in a Variety Club bus. Our flight is a 1.40 and we've spent the last hour just trying to get out of Athy...

Ciara was told about her trip last night and is going up the wall with excitement. She seems to be afraid of hotels for some reason. That's a new one on us and could be interesting tonight!

Global Finger Crossing

2007-09-03T10:31:00.000+01:00

To sum up, Ciara needed her platelets to be over 50 to fly. Her doctors said if she was over 40 today they could transfuse to bring he up to over 50. On Wednesday she as 21, Friday she was 23...not looking good....Today it's....80!!!

Off to London tomorrow then!

Stage School at the Mall

2007-09-01T22:52:00.000+01:00

Today Ciara was lucky enough to catch a demonstration held by a local stage school. She loves this kind of stuff and had a great boogy along with the boys and girls from the school. It looks like my dreams of her becoming an astronaut may be in vain, I think we have a performer!

Fingers crossed for a high count on Monday

2007-08-31T21:04:00.000+01:00

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.

Sucess and bubblegum

2007-08-24T17:45:00.001+01:00

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...

RG3:Radioactive Girl III

2007-08-22T18:38:00.001+01:00

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.

Dinosaurs for a sick child appeal

2007-08-15T08:27:00.000+01:00

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.

Could it be marshmallows?

2007-08-13T22:08:00.000+01:00

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.

2nd Harvesting Done, More Chemo next week.

2007-08-08T21:52:00.000+01:00

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.

Significant Improvement

2007-08-03T20:17:00.000+01:00

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.

Results

2007-08-01T21:51:00.000+01:00

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.

Radioactive Girl 2

2007-07-27T23:57:00.000+01:00

For the last three days Ciara has been radioactive and Yvonne has been away. Ciara and I were up on Wednesday for the dye injection then back up yesterday for the scan itself. The time between Ciara going under general anaesthetic and coming out of the recovery room were extremely lonely and I would not recommend doing it alone to anyone. It was great to have Ciara back with me though.

She had a transfusion afterwards so we could avoid coming in again today. We both got home at about 10.30 and went straight to bed with Ciara deciding to join me. Unfortunately I was working until about 3.30am to appease Major Client. Small companies are hard bloody work! Yvonne was back today and we managed to get a quick trip to the park before the clouds broke again.

We're yet to receive the results of the scan yet but we expect them next week. Ciara will be in Portlaoise on Sunday (Yvonne's birthday) for a full blood count before going back up to Crumlin on Monday. She is in for more bone marrow aspirates and trephines so another general for her! Still a transitional phase at the moment, we're deciding whether more stem cell harvesting is required and if she's ready for surgery. Hopefully next week we'll know more.

Back home for a couple of days

2007-07-22T19:32:00.000+01:00

We're back home after TVD chemo number 2. She went in the same way she came out. Completely full of beans and raring to go! Yvonne and I kind of want her to at least be a bit tired or sick otherwise we're not sure anything's happening at all! We have heard though that some kids take to TVD very well and don't get sick at all. Ciara would seem to be one of those kids.

This Wednesday Ciara will be having the MIBG radioactive dye thingy. That will be day unit treatments so back home afterwards. She'll miss her mum though as Yvonne is going to have to make herself scarce. Can't have radioactive Ciaras running around a pregnant woman!

Ciara Meets the Leinster Cup Winners

2007-07-20T22:39:00.000+01:00

Busy day for Ciara yesterday...she met members of the Dublin GAA Football team, winners of the Leinster cup last weekend. They came round the ward and had their photo's taken with a number of kids here. Ciara was a bit different, as she was the only one who appeared in three national papers, the above picture is from page 2 of today's Mirror.

There have been calls from all over from people who saw her in the papers. Even her Grandad said that maybe Dublin ain't so bad and might start shopping in Arnots and Yvonne said that this is the last picture of Ciara she expects to see in the Sun!

To cap the day, presenters from The Den (kids TV) came in and Ciara had a laugh and a boogey with them. Nice end to a great day...

Stem cells harvested, now more chemo

2007-07-17T22:30:00.000+01:00

Last week Ciara finally had her stem cells harvested. The week started with Ciara going up to Crumlin to check blood levels to see if she was ready for harvesting. Monday's results showed that she was close but not close enough and to come back in the following day. Same story on Tuesday, close, but no cigar. Try again tomorrow. Wednesday the levels good and she went ahead with the harvesting. This involves being connected to a large machine which draws out her blood, runs it through a centrifuge, and puts it back in once the stem cells have been harvested. This is a three hour process of constant monitoring and Ciara got through it very well. She needed to come back in on Thursday to finish it off but all in all, quite uneventful!

Her blood count on Thursday showed signs that she would be ready for her next chemo session on Monday, and sure enough, it was. She's on day two of her second TVD session and is doing very well. She's coping with the TVD so much better than the last protocol and has no sickness whatsoever. Her energy levels are something to be experienced to be belived. There's no stopping her! She does however go so far as to crash in the afternoon yet refuses to nap, causing much stress to poor Yvonne. She's a rock though and does herself proud.

Another scary few days

2007-07-05T18:42:00.001+01:00

Ciara was in Crumlin on Monday for her MRI on Tuesday. By Tuesday lunchtime, Ciara had been fasting since 9pm the previous night and, as you can imagine, was very hungry. We managed to distract her with lots of playroom fun though. While I was working in her room Dr Breaneach came in with a bunch of new doctors and wasn't his normal cheery self. He sat on the bed and told me that the bone marrow aspirates taken the previous Friday showed cause for concern. I asked him to wait for me to get Yvonne before he carried on.

To recap, the last results showed that her marrow was clear of neuroblastoma. However this results showed 40% neuroblastoma cells. Dr Breanach said that neuroblastoma is very patchy, as a result, the last aspirates could have just missed everything and come up clear. So from this it would be difficult to tell the progress, if we'd missed all the cancer last time, we wouldn't know if this one was less than before. There was also a chance that the cancer had come back between the previous and recent aspirates. He ordered a urine catechlomines test which would give a biological view as to what was happening. We managed to get Ciara to wee on demand and this was sent off to the lab.

Ciara was shortly sent up for the MRI where she reluctantly had another general anaesthetic. We went off for lunch and to chew our nails, waiting for the worst from the urine test but of course hoping for the best.

Five traumatic hours later, the results of the urine test came back. A normal level of catechlomines is 14. When Ciara was first diagnosed her level was 150. A test a couple of months ago, after chemo, was 70. Tuesday's results were 20 something, nearly normal! So why the positive results to the bone marrow aspirates? The biology didn't match the morphology. Dr Breanach asked himself this question and pulled up the results of the previous aspirates. The comments said that there were "40% abnormal cells". Chemo damages bone marrow cells, and so does cancer. In the first aspirates, abnormal was interpreted as cells damaged by chemo, not cancer.

Once Ciara had recovered from the GA, we were sent home. There was a brief delay in getting home as some idiot had left the lights on in the car and the battery was flat. The same idiot was even told the day before that his lights were on, he checked the car still started then forgot to turn the lights off!

We still needed to wait for the result of the trephines (a bone core) taken from last Friday. And of course we needed to wait for the results of Tuesday's MRI. Both of these would come back Thursday, today.

Today was very anxious. I worked from home but found it difficult to concentrate. By 5pm would couldn't wait any longer and chased up the hospital. A call came back a few minutes later.

The MRI showed excellent progress and the trephines came back clear, no neuroblastoma. So it's looking more like the recent aspirate tests were miss-interpreted as neuroblastoma rather than chemo-damaged cells. The haemotologist did say to Dr Breanach that it's very difficult to tell the difference between neuroblastoma cells and chemo damaged cells. Another new test will be carried out to try and clear up the confusion with the results due maybe Friday. In the mean time, Ciara will wait for her blood count to come back up before the next TVD (chemo session). If they come up early enough she may be OK to go ahead with the stem cell harvesting before the next TVD. Surgery is to be held off until further notice, but we expected that.

Sore throat and future plans

2007-06-30T03:03:00.000+01:00

From the weekend on, Ciara hasn't been feeling herself and had been complaining of a sore throat. Her Aunty Tracy had flown over on Tuesday to see us and of course Ciara's temperature started to rise! It always does if people come to see her, Sod's Law. As I might have mentioned before, temperature rises have to carefully monitored as she has such poor immunity. It is a time of great anxiety as if it reaches 38 degrees, she needs to go into hospital for a 5 day course of intravenous antibiotics.

By Monday it started to go over 37 degrees. Once Tracy got here is started edging up further. Yvonne called Crumlin for advice and they said keep an eye on her but go in to Portlaoise if it hits 38. Sure enough, on Wednesday afternoon, it hit 38. Pretty irritating as we try so hard to keep her out of hospital in the time between Chemo sessions. She was only outlast Thursday but then had to go in to Portlaoise for a full blood count on Friday and ended up wasting Saturday having another transfusion.

She stayed in Portlaoise with Yvonne on Wednesday night where initial assessment showed that she may have tonsillitis. Ciara was due to have bone marrow aspirations today (yesterday now!) where they draw liquid from the marrow to check for cancer cells. They wanted to get her up for assessment on Thursday night so we had a late drive from Portlaoise to Crumlin following yet another platelet and blood transfusion. She checked out OK and was able to go through with the procedure. Quite a relief as I thought she might not be fit enough. The procedure involves a general anaesthetic and a couple of big needles in her back. The GA meant she was fasting from Thursday evening and was VERY cross that she couldn't have breakfast!

Results of the bone marrow aspirates should be due on Monday or Tuesday. Her temperature hasn't peaked since Wednesday, her throat is better and all going well we could be going home tomorrow...er...today. She had another blood transfusion today. I'm sure Irelands blood supplies are being badly diminished by one small person. I would donate myself but they won't accept my blood in Ireland as I've lived in the UK within 10 years. Stupid mad cows.

The next couple of weeks are going to extremely busy. Ciara is fast approaching surgery and we've been given a date of 9th July. On Tuesday Ciara will be having a full body MRI and will need to be in the day before in case of an early Tuesday slot.

Sometime between now and surgery and depending on the results of today's aspirates, Ciara should be having peripheral bloody stem cell harvesting. This is a three hour procedure where she's attached to something like a washing machine and stem cells are removed for storage. These are put on ice until after she has high-dose Chemo which destroys bone marrow and stem cells. She'll then be given her own good cells back.

Also coming up will be another MIBG, this is the procedure involving injecting Ciara with a radioactive dye so any malignant cells show up on a CT scan. Not sure when this is happening but as Yvonne is pregnant, she'll have to be away for 24 hours.

Ciara was due to have a final chemo session before surgery next Thursday but as the harvesting is happening next week and surgery is following that, this has been cancelled. From what I understand the reason harvesting is happening next week is because of staffing issues otherwise it may have been later. This had us worried as we where thinking that she's missing a chemo session because of staff problems! However she's having the MRI and MIBG next week, and on Thursday she'll be discussed at the tumour board. They won't give her surgery unless she's ready, so if she's not ready, I guess the missed chemo session won't make a difference as she may have further sessions anyway.

To top all this, the doctors in the hospitals finish their rotations this weekend so from Monday there will be a whole new bunch of rookies to deal with. Some straight out of med school! We keep our consultants though thank God!

In herself Ciara's feeling a bit sorry for herself, but this is just down to the sore throat/tonsillitis. Last week, she was running up and down the corridor with a cowboy hat on shouting "yipee-kayay!". Bit more subdued this week. It also looks like she might be losing her eyelashes and eyebrows. Had to happen sometime I guess.

A Night at the Zoo!

2007-06-22T00:40:00.000+01:00

Well last night was a bit more than just Ciara staying with us as Ronald McDonald house. We ended up being taken to the zoo in the back of a police van and being the first to see Dublin Zoo's new baby elephant! Only the Taoiseach and the Ambasador for India had seen it before us!!

It's an annual thing arranged by Dublin Zoo to get the kids from all the dublin children's hospitals out there after closing time. It was fantastic fun, Ciara was over the moon. After a day of torrential rain, it cleared up just as we got there and the sun came out. Perfect.

Ciara then stayed with us at the House for the night and had a kidney test today. Now we're back home.

Chemo over the last few days went well. Ciara wasn't sick once but she was being pretty well dosed with anti-sickness drugs. Personally I would like to see some visible effect to chemo so I know somethings actually happening but that might be a strange wish. She still has all her energy and has actually put on weight!

Our next session is around 5th July. She will be having a bone asperation at that point to see if her marrow is clear of cancer, as it was last asperation. If so then the stem cell harvesting can begin. A full staging test is going to happen around then to see if she's ready for surgery.

Nothing Happening

2007-06-12T17:54:00.000+01:00

Sorry for the lack of update but nothing much has been happening Ciara-wise! Now Ciara is on the new programme this is a good thing as we should be having a good couple of weeks between sessions. She's been in Portlaoise a couple of time for transfusions and is in again today for another load of platelets (lots of bruises). The results of today's full blood count showed that she will be bit and ready for another session of Chemo on Thursday.

We've just had a wonderfully sunny weekend for her fourth birthday, and she absolutely had a ball! She was in excellent form and went non-stop from 6am to 10pm. She's getting pretty proficient on her new Barbie bike already. I'll post a vid of the day once I've had a chance to put it together. Work is hell at the moment and I get home and crash!

Yvonne had a scan today. A blurred and squigling baby showed up on the monitor looking well. All normal so far and it's at 15 weeks.

Funny thing happened to us on Sunday while we were out for a bit of light retail-therapy. After queuing for ages for rapidly melting ice-cream, we asked the vendor what flavour "Pink Panther" actually was. We didn't want bubblegum ice-cream instead of strawberry. "Pink" was the answer from the girl with very poor English.
"No...pink is a colour, not a flavour. What flavour is it?", I asked.
"err....Pink"

At least it wasn't panther flavoured.

Sleepless nights

2007-05-30T18:37:00.000+01:00

After the weekend's scare, and the last few weeks of kidney related uncertainty, we're trying to settle down in to a bit of routine. We've got a couple of weeks off before Ciara starts on the new chemo protocol so will try and make the most of it and we've been out buying toys for her birthday. She will be SOOOO spoilt.

Ciara has been bruising badly of late so Yvonne took her into Portlaoise today for a full blood count. As suspected, her platelets are low and so is currently having a transfusion. Tomorrow she'll get a blood transfusion as well.

Before all this started, Yvonne and I were quite strict about Ciara coming in to bed with us. This wasn't really a problem as she rarely wanted to. Of late however, she's been waking multiple time through the night, most often because she wants help going to the loo but she's also been getting bad dreams, of the "the flumps stole my bucket!" variety. It's been really difficult to get her to calm down. It was a good few weeks ago that one of us (probably me) suggested she climbed in with us. This became a regular thing,with her visiting us in the early morning, then the REALLY early morning, and now it's the middle of the bloody night! Bad dream or not, she wants to come in with us and the tantrums if we say no must be waking up the county! I fell asleep on her bed last night reading a bloody awful book about fairies. I eventually went to bed but she woke up crying at 2am wondering where her mummy and daddy were. I ended sleeping in with her in her tiny bed. It was nice though, she hugged my arm and had a lovely smile on her face as she went to sleep.

In any other situation we would pursue a strict bedtime routine but that would be unfair at the moment, what with her being in and out of hospital so often. The other night, she came into our bed and kicked me out as there wasn't enough room! I am such a soft touch!

False Alarm!

2007-05-28T23:35:00.001+01:00

The biopsy from Ciara's mysterious lump came back negative! Not a trace of neuroblastoma. It's just a blood clot, or a bad bruise, basically nothing to worry about! I nearly dropped to my knees in public when I heard. After this weekend, and the previous problems with the kidneys, this has been the most amazing boost. Only this morning, in a very glum moment, we were talking about making the most of the time we have. Now we can hope for a future again. Thank God.

Putting it off

2007-05-27T20:25:00.000+01:00

I've been putting off writing this post for a few days as I don't want to write down what's going on. I will force myself though for the records if nothing else. Ciara finally started back on chemo last Thursday after much umming and ahhing. Her platelets weren't coming up as they would have liked so she had a transfusion in Portlaoise on Wednesday ready for chemo in Crumlin on Thursday. This was the last chemo session before going over to the TVD regimen I mentioned earlier.

I joined Yvonne and Ciara after work on Thursday night at the hospital and the two of them were busy playing Snakes and Ladders in the parents room. I noticed what looked like a tiny but dark bruise on Ciara's elbow and asked her what it was. She said it was marker and covered her arm up. I had a closer look and could feel a lump under the skin. There was another one of these on her other arm but without the bruise. We mentioned it to the nurses who said they'd get a doctor to look at it. It wasn't until the following morning, while I was at work, that Yvonne called me to say that Dr Capra (another oncologist) was worried about them. Again this year, I had the sickening lurch in the stomach. I drove back to the hospital to be with Yvonne while we found out what was going on.

Dr Capra had asked a dermatologist to look at it and it was the chief dermatology consultant who came down. He said it could be a bruise, or a haematoma, as she had low platelets, but this was unlikely and he wanted to get a biopsy done straight away. Ciara was given an interesting mix of morphine and chloral hydrate and quickly became the swaying and singing drunk we discovered a couple of months ago. A 'core' sample was taken from her left arm and sent to the lab.

Back in the ward Dr Capra came to talk to us again. At this point Ciara was at the 10 pints of lager, "I realllly love you i doooo" stage of sedation and was polishing off a plate of sausage-roll and chips, some of it even going in her mouth.

This weekend we are preparing for bad news from the biopsy results, due Monday. While there is a chance that it's not neuroblastoma, it's very unlikely and false-hope would not be good for anyone. I asked Dr Capra if that means the treatment has not been working as well as we'd liked, and he nodded. This is a hammer-blow, Ciara needs all the luck she can get and this isn't it. Yvonne and I had led ourselves to believe that the treatment would be successful at least in the short term and that the big problem would be a recurrence later on. We had not prepared for the fact that the treatment itself might not be working.

What is strange is that the results of the recent bone-marrow aspiration came back negative, they were clear of neuroblastoma. How can it be clear somewhere and popping up elsewhere? Alas, this is possible with this type of cancer. I asked if the three week break between her chemo sessions could have attributed to this further spread and Dr Capra said this was very unlikely. In the US, treatment is separated by three weeks anyway and this kind of thing does not occur there. It seems that this is something that was going to happen anyway and the treatment break would not have made any difference.

Ciara will be starting the new TVD regime in about three weeks, and if the lumps turn out to be neuroblastoma then a further treatment strategy will need to be put in place. Details of further treatment were not covered on Friday as there was no confirmation that is was neuroblastoma, but let's be realistic.

In other news, Yvonne and I thought that all the stress wasn't enough so to add to it, Yvonne is pregnant. This was BEFORE diagnosis I have to point out, we're not that stupid! Oh, and two key people have left the company and I've been lumbered with the work of one of them, and some of the work of the other. In about 18 years time, once Ciara and the new baby have gone to college, I am planning on having a nervous breakdown, and I can't wait.

Ciara mid hicough

2007-05-19T17:53:00.000+01:00

Just trying out a new feature. I can now post pictures directly from my PDA wherever I may be. Good O!

Change In Chemo

2007-05-16T22:45:00.000+01:00

Ciara had another kidney test on Monday, the same type of test as she had last week called a Gromerular Filtration Rate (GFR). This determines how well the kidney is working and is required before she takes any chemo drugs that are nephrotoxic, that is being dangerous to the kidneys. One of the drugs Ciara was meant to have last week, Cisplatin, is nephrotoxic, hence the test. Her GFR last week was 43, this is pretty low, a normal rate is over 80, and as a result she was unable to have the chemo. It was decided to test and try again this week, but her GFR on Monday was 44, still too low.

After discussions with the head of the clinical trial in the UK, it's been decided that Ciara can no longer take any nephrotoxic drugs. This means that she is no longer part of the chemo trial as she will be veering away from the protocol. She will be continuing with a different chemo regimen called TVD, which are the initials of the drugs involved, Topetecan; Vincristine; Doxorubicin. Her old protocol was involved a session every 10 days, TVD will be every 21 days.

Ciara has now missed out on one chemo session of Cisplatin, and won't be getting Cisplatin or Carboplatin again. Before she starts on the TVD she's due one more of the old protocol sessions, Cyclophosphamide and Etoposide (and the ubiquitous Vincristine). These drugs have a high risk of causing marrow damage and so there needs to be about 20 days between sessions to allow the body to recover. As it's only been 15 days since she last had this her body has not recovered yet; her platelets are still too low to be able to take the drugs. She had plain old Vincristine today plus a platelet transfusion and was sent home again. She'll have a full blood count on Tuesday and hopefully will continue with chemo on Wednesday.

Ciara has had a problem with kidneys from day one and it's a shame and a worry that a group of effective drugs now have to be taken off the list completely. The kidney problem could be a result of the chemo, or the cancer itself, not enough is know about Neuroblastoma to be sure. Some kids get problems with their intestines, others with their heart or ears, Ciara's problem was with her kidneys. It would appear that neither of the kidneys are functioning correctly, possibly as a result of an auto-immune action in one damaging the other. Hopefully it's not long term, but if she had carried on with Cisplatin or Carboplatin, we could be sure that it would be.

2007-05-12T18:45:00.000+01:00

Not much hair, but so beautiful

Unscheduled Home-time

2007-05-11T18:02:00.000+01:00

Ciara was due to have chemo session number six today however we are spending the weekend at home instead. She had a kidney function test yesterday to make sure they were capable of clearing out the chemo drugs. The results showed that she had poor kidney function and they were retaining fluids normally disposed of, urea and something else (?). These results can indicate a damaged kidney, or simply as a result of something simple like dehydration.

The consultant thought the results were unusual as Ciara had tested OK before and it would be strange if she suddenly had such an acute symptom. Ciara has been very low this week and has had diarrhea so this may explain it. It does mean that Ciara is unfit to have this session of chemo right now so it's been decided that she will have an additional kidney function test on Monday. Hopefully yesterday's results were anomalous and she will be able to carry on with the chemo as normal.

One interesting point is that the consultant made a call to the head of the clinical trial in the UK to discuss the next steps for Ciara. It's good to know that each case is treated individually and Ciara's not just on a cancer production line.

So we have another weekend off, and a much needed one too. It's been a busy old week.

2007-05-08T22:20:00.000+01:00

Ciara had her MRI scan today in what was a very long day starting at about 4.45am.

Yesterday we had to take Ciara to Portlaoise to have a platelet and blood transfusion as she'd had a nosebleed all morning. Of course we were prepared to go to hospital as it was a public holiday in Ireland. We've spent every public holiday in hospital since last October for one reason or another. Yvonne stayed at home last night as she wasn't feeling too hot so it was just her nibs and myself off to do the bloods. We didn't get home until about 11.30pm and had to be up to make a 7am admission in Dublin the following morning. The Road Hauliers Association were planning a go-slow of trucks on the M50 (Dublin orbital) starting at 5am so we set off good and early to miss it all. We missed everything and got there an hour early.

For some reason we were given an admission time of 7am for a lunch-time scan When we heard about this last week we got it checked out to make sure it was right, and sure enough it was. When we got in today they were wondering why we were there so early! After an hour in a waiting room with a sick little Ciara, I went for a walk to make a call to the oncology department to find out what was going on. They soon got us shifted into a room and while we still had to wait but at least it was quiet. Everyone apologised profusely.

She had the scan at about 12 under general anaesthetic and was out and hour later in a foul mood and not at all impressed with being there. She'd been fasting since the night before and was generally fed up and has been very down since her last chemo session on Thursday which totally knocked her for six.

The good news is that all is going how it should be. The preliminary results show that the primary and secondary tumours are smaller. We knew this was going to be the result as she had been getting on so well in herself but it's good to get it confirmed. We had some worry this morning as it looked like her eye had swollen up again but her consultant thinks it's just oedema or swelling from fluids.

Ciara having a boogie

2007-05-06T20:42:00.000+01:00

A little clip here of Ciara having a boogie at home and while having her chemo. She's at the age now where she loves to copy dance moves and make up her own...very cute!

Day Patient

2007-05-05T20:10:00.000+01:00

This week Ciara was in one hospital or another every day apart from Friday yet at no point did she have to stay over. The day after Tuesday's bone marrow aspiration she started chemotherapy session number five and I drove them both up and left them to it while I went work. As you may remember Ciara came into contact with Chicken Pox a few weeks ago and so has been in isolation whenever she visits the hospitals. Unfortunately this little administrative detail seems beyond the hospital organisers and whenever she turns up, it's always a surprise.

As a result, Ciara had to spend Wednesday in an tiny office with just a small examination bed to lie on while the chemo was administered. On top of that, her ultrasound had to be put back to the last slot as no one had told then that Ciara was in isolation.

However easy is it for me to criticise, if you ever stop to think of the logistical nightmare running a day ward must be you tend to give them a break. It would be nice if they read her notes now and then though.

On the way home, following the now ubiquitous McDonald's, Ciara was sick in the car. This should have been no surprise considering she had just had four hours of chemotherapy, but being new to this whole day patient thing, we were poorly prepared. We scraped out the worst at the side of the road while being scrutinised by some gurning culchie (Irish country-bumpkin). Ask yourself, what would you need to bring in the car for your child who has just had a chemotherapy session? Well done to you if “a spare set of clothes” is at the top of your list, you would make an excellent cancer parent. As it was Ciara wore my t-shirt home and ended up falling in love with it. Well it was your finest Von Dutch rip-off! She didn't take it off until the following morning, and then only under duress.

Thursday was Part 2 of the chemo session and I spent the day with them as well. This time we had a bigger office! Woo Hoo! It turned out to be the ultimate in efficient chemotherapy administration. We were told it would take four hours. It took four hours! We were home in time for for Bagpuss and The Flumps!. Unlike Wednesday, she wasn't sick. Modern anti-sickness drugs are something to behold. Chemo is so toxic that the nurses wear goggles when setting it up and yet Ciara is not even sick . Thank you Pfizer and all your ilk (no, she's not getting Viagra). Six months ago I detested pharmaceutical companies as corrupt and cynical money-men, but you do forget all that crap when your own are sick.

Today (Saturday) has been a lovely day. Now that global warming is kicking in we've had an August style April! Bring it on! (sorry, Bangladesh). We visited the the Japanese Gardens and Irish National Stud today in Kildare. It's one of Ireland's primary attractions and is only 10 minutes up the road, so would be rude not to visit at least once. Ciara enjoyed herself but she does get tired very quickly. Even if she's there for only five minutes, I won't begrudge the entrance fee. Carpi Diem brings on a whole new meaning when your daughter is so unwell. Yvonne managed to keep her distaste for foreign exchange students in check, however I was not so restrained, and ended up reprimanding a group of French students for going the wrong way along a stepping-stone stream. If only they knew what I was saying.

Next week, find out how Ciara gets on with the big, scary MRI scan. This is happening on Tuesday and will more than likely involve another General. I guess we'll be hearing some results of this week's tests too. Next chemotherapy session is 12th May, which, being a Saturday, may not happen until the Monday. Who knows? As such, don't expect too many updates until around then...but do come back!

Still on good form

2007-05-01T19:37:00.000+01:00

Sorry for the delay since the last post...nothing has really happened!

Today Ciara had a bone marrow aspiration to check the progress of the chemo which involves a general anaesthetic. About the time she was due out of theatre Yvonne and I went up to the recovery area. She was rolled out a few minutes later, sitting up on the trolley shouting "Mummy! Daddy!". This was about 15 minutes after a general anaesthetic! She then chatted all the way back to the ward and proceeded to wolf down a plate of sausage and chips. Incredible.

Ciara straight after her bone marrow aspiration.

The last week has been pretty uneventful and for once we've spent more time at home than we have in the hospital. Last Friday Ciara was due to have a blood transfusion in Portlaoise but in the end this wasn't necessary and was home in a short time. The weekend was lovely. Really sunny and we managed to do lots of normal family things. We went shopping on Saturday just for an excuse to go to McDonald's. Ciara was laughing and running about like you wouldn't believe. On Sunday her Grandad and Auntie came to visit and we spent the afternoon playing with radio controlled cars and flying kites. There were a few tears when Ciara's kite disappeared into the blue but her super-hero Dad managed to rescue it a few hours later. It involved wading out 150m into a rapeseed field, getting drenched, stained yellow, and risking being electrocuted, but I did it.

Monday involved a couple of trips to Portlaoise. The first for a full blood count, and the second, for a transfusion as a result of the ealier FBC. Luckily Portlaoise is only 15mins away but she was still home way past her bed time and had to be up at the crack of dawn to go up to Our Lady's.

Tomorrow is a busy day. First thing will be an abdominal ultrasound to see how the primary tumour is getting on, or isn't getting on as we hope is the case. After that she'll be getting a platelet transfusion. She's bruising easily and it takes ages for her to stop bleeding when we give her the "zappy pen", her name for the injector we use for the GCSF white blood cell stimulator. Finally it will be the start of chemo session number 5. For the first time she will be treated as an outpatient and will be going home in the evening to return the following day. This is great news. There's nothing like your own bed and not be constantly prodded by nurses. Erm...well...

Oh! That wasn't so tough!

2007-04-25T22:06:00.000+01:00

We're back home after a very straightforward chemo session. Apart from a six hour administrative delay before we saw a doctor at Our Lady's on Sunday night, it all went very well. 24hrs of Chemo, 24hrs of post-hydration, a bit of sleap, and home! She spent the time waiting to be seen on Sunday using my phone to take pictures of any nurses that walked passed her window. She had her own room because of the stupid chicken-pox scare. Nice that she can sleep at night but not nice that she can't leave the room to go to the play room. Yvonne and I also had to spend our time with her in disposable aprons.

She's booked into theatre on Monday for a bone marrow aspiration so we can see how she's getting on. That will be...let me think...her sixth general anaesthetic this year. I've had one in my whole life. There will also be a urine test for catecholamine levels. Her neuroblastoma was confirmed by an increase in the normal level of this hormone, which prepares the body for fight-or-flight defence, so we'll be looking in a decrease in these.

She's had a bit of high blood pressure, and is taking amlodopine for this, but I reckon the high level is caused by the fact that she gets so pissed off when the nurses take her BP. She gets really stressed and even when not crying you can see she's very tense when they put the cuff on her. However it looks like we've sorted out the anti-sickness drugs, Zofran and Motilium, as she was hardly sick at all even after a full 24hrs of non-stop chemo. She was feeling pretty cruddy on Monday and Tuesday but last night she really perked up. She's back on the good form she was in all of last week, even after having to go through having the dressing changed on her freddie site. This was the first time that Yvonne had done this herself and did it brilliantly. It looked so neat!

On Friday she's due to go to Portlaoise to have a platelet transfusion. Portlaoise seem to have a habit of screwing up things like that. A platelet transfusion should take just a couple of hours. Portlaoise have to get platelets from Dublin on the day of the transfusion and they're also overly keen on keeping people in for 'observation'. At Our Lady's they want the kids home as much as possible and I agree with them. Nothing like your own home to convalesce. If Portlaoise screw up again and she has to spend the night because of a simple transfusion, we will be looking at scrapping them for local care and just going up to Dublin for any treatment. Portlaoise are yet to convince me that they are a capable shared-care hospital for cancer patients. We also need to go there on Sunday for a full blood count (FBC) before Ciara's operation on Monday. Fingers crossed that they can work out how to do that without an overnight stay.

Away from the treatment. So far this week I've had to tell a new employee, a client, and a vendor that Ciara has cancer. The new employee needed to know why his boss only does a three day week and is the only member of staff who can work from home. The client had shown a caring interest after finding out Ciara was unwell from Christmas. He seemed quite upset when I told him on Tuesday. It doesn't get easier telling people this stuff. Personally I tell people and immediately want the ground to swallow me up. It's difficult watching people who are visibly uncomfortable trying to find words to respond with. I normally end up saying something lame like "well, these things happen" and rapidly change the subject.

It's easier if they actually see Ciara though, she's such a clever and funny little person that people forget her illness. The office recently bought Ciara a new bear with her name embroidered on it's shirt. She previously had a big teddy bear called "Big Ted", a little teddy bear called "Little Ted", and the new one is somewhere in between.

She has named it "Medium Ted".

Ciara with "Medium Ted"

Now there was something else I had to mention. Something about a visitor we had? Nope...lost it. Couldn't have been that important.

Calm before the storm

2007-04-21T23:03:00.000+01:00

Another night in Portlaoise. Ciara has another lot of antibiotics due in an hour or so, this completes the treatment for the blip on the temperature scale Friday evening. Ciara and I had a nice evening here in the ward. She's in her own room and it's lovely and spacious, with it's own loo. The paediatric ward at Portlaoise is pretty new so everything is shiny and working. It's actually quite nice!

Ciara and I spent the evening playing games on the computer and downloading Lego adverts from YouTube. God I love the Internet! Yvonne was at home this evening packing for our trip to Our Lady's first thing and she did a video call to us with Skype to say goodnight to Ciara. Very cool. Nice for Ciara to see her mummy even though she was a few miles away. Ciara wasn't that impressed though as she was busy with a game, I don't think she realised what an amazing thing had just happened. Earlier in the day a nurse took a photo of Ciara with a disposable camera and Ciara asked to have a look a the back of it to see the picture she'd just taken. That's my 21st Century girl. Thinks video calls are normal and doesn't know about film cameras.

As I say, Ciara will be out of here this morning and straight up to Dublin without a break. Busy week this week as it's a staging week, meaning there are number of tests to be carried out to see how the therapy is doing. For those interested here's a link to Ciara's therapy protocol flow chart.

Tomorrow will be day 30 of the treatment and her fourth Chemo session, how time flies. According to the protocol this week will include a local ultrasound and bone marrow aspirates (drawing liquid). However I did hear mention last week that there may be more, maybe a CT. Will need to check tomorrow. Only a single night of Chemo but it's Cisplatin and and Vincristine - big sick makers. Still it's quiet here, no snoring, she's happy enough and is having a nice rest.

Not much of a week off

2007-04-21T09:24:00.000+01:00

It's Saturday morning and Ciara has spent another night in hospital on what was meant to be a week off between chemo sessions.

Ciara's aunty came down yesterday evening and Ciara had been looking forward to seeing her all day. Just before we settled down to an evening of wedding planning (Ciara's aunt), I took Ciara's temp. It was at 38.1 in one ear and 37.5 in the other. As she's neutropenic at the moment, i.e., no immunity, all temperature rises have to be checked out. We took her temp again a few minutes later and it was back to 36.8 or something. Fine in other words but we thought we should still get her checked out.

It took me a while to get through to anyone at either Our Lady's or Portlaoise because of nurses industrial action. They've been working to rule for the past three weeks which included not answering phones. Great timing for us! We wanted to tell Portlaoise we were coming in for her to be checked out, hopefully to come straight back home.

When at Portlaoise, the nurse took her temperature every 30 minutes and it came out normal each time. The doctor on duty obviously didn't have any oncology experience and called St John's ward at Our Lady's. She couldn't get hold of the on call Oncologist because of the industrial action and came back to us saying she'll keep her in just to be on the safe side! I wasn't very impressed with this, she should be at home if she's OK, so I got her to try to speak to an Oncologist again.

I ended up speaking to the Oncologist myself. St John's had decided to put her on antibiotics straight away. I was a bit happier with this as something was actually happening rather than Ciara being here just to be observed. We can observe her at home!

Treatment in Portlaoise is a bit different from St John' ward. St John's is a dedicated oncology war and they can be quite blasé about procedures. However at Portlaoise they don't have that experience and so everything is literally done by the book: they have a big 'Oncology Manual'. Getting bloods from Ciara's freddie took ages as one of the lumens (legs of the freddie) was blocked. She needed blood taken from a vein and the doctor on duty was going to leave the line in after the test, something Ciara would have hated. Luckily the nurse had a lot more oncology experience and stepped in to intervene, but the doctor was insistent. The nurse had to take the doctor out of the room to 'explain' why Ciara was not have a line left in her hand (not done with oncology patients:risk of infection). After a few minutes the doctor came back in to pick up the 'manual' to check!. It looked like the nurse was right though, no line was left in. I can't fault the nurses at Portlaoise, they seem to have a lot more oncology experience than the doctors that's for sure. Things just go to pot when non-onc doctors get involved.

After the bloods were taken it was 1am before she got to bed. She was woken up again at about 4am to have a platelet transfusion but otherwise had a peaceful night sleep. Her temperature hasn't peaked either and I'm thinking we've wasted a very valuable weekend because of a duff temperature reading.

This morning she was very upset and just wanted to go "home...home...home!!". I'm hoping that when Portlaoise speak to Ciara's consultant later today, she'll send Ciara home. Failing that Ciara will be here again for another night before going straight back up to St John's for Chemo #4. Poor love. She's going to be mortified when she finds out, we were going to be getting her ball pool out today for the first time this year and Ciara was planning on torturing the cat with the hose pipe. Maybe next time she'll have a few real days off.

Poxy Chickens!

2007-04-18T16:52:00.000+01:00

Ciara and Yvonne spent last night in Portlaoise so that Ciara could get a platelets and blood transfusion. The platelet count needs to be kept high to stop things like nosebleeds.

They arrived home about 3.30 this afternoon and Yvonne gave me a call to tell me as soon as they got in. About 30 seconds later, I received a call from Our Lady's Hospital in Dublin. Apparently Ciara has been in contact with Chicken Pox!!! Our stupid roomies who kept Ciara and myself awake three nights in a row had it. They were the worst room mates ever. The little girl's mum was such a heavy sleaper that she wouuld't wake up if her daughter needed anything. I was constantly up calling the nurse to get them to sort out the girls drips so they would stop beeping. On top of that, the mum was the kind of person who thought it was ok to leave her seven year old alone in a tiny hospital room for hours at a time and wondered why she was crying when she got back. Still, not every one can be perfect parents like myself and Yvonne.

Back to the Chicken Pox. I told Yvonne that Ciara needed to go to hospital for an infusion of a drug to try and protect Ciara from getting Chicken Pox herself. Let's just say that Yvonne wasn't too impressed with the thought of another night in hospital with Ciara on what should have been our week off. Ciara was devasted at the thought too.

Luckilly it turns out no ton be an overnight job and they both should be home this evening.

We will now have to keep an even closer eye on Ciara now for a month, as in her condition she wouldn't be able to go through chicken pox normally and would need further attention. Still I guess we get single rooms for a bit when we go in for chemo...

Nosebleeds

2007-04-17T16:28:00.000+01:00

Ciara's has just had her third nosebleed since Thursday. Nosebleeds are scary things these days so Yvonne's taking her up to Portlaoise hospital and she's probably going to have to stay there overnight. I'm going to slep of the now to meet up with them.

This morning she woke up sore in her legs and has been having a sore arm now and then. It's to be expected I guess but this really worries us. The first thing both of us think when Ciara complains of limb pain is that the secondary tumours are fighting the chemo and getting bigger. This probably isn't the case but it's hard not to worry about the slightest little thing.

2007-04-15T18:17:00.000+01:00

We just can't get over what good form Ciara has been over the weekend. We haven't seen her like this since before she was ill. We got home today after finishing her third chemo only last night. She's been running around in the garden, laughing and joking about. Her grandparents were down today and it was great that they got to see her in such a good mood. She's lifted everyone's spirits. She's also looking really well. She may have hardly any hair but she just looks so healthy! This morning she did her first decent poo in weeks...nice bit of detail I know but this stuff is great news.

New Tigger ears.