Oh! That wasn't so tough!

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

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

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!

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

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.

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.

Final catchup

It's 2am in the morning and my old insomnia has returned, helped in no small part by our ward roomy's incessant snoring! So I will take this opportunity to complete the catch up of our last three months.

On the morning of Wednesday 21st March 2007, Ciara had a blood transfusion. She was badly anaemic, enough so that she would normally have been given a transfusion as soon as she arrived but as she had notes saying she'd had anaemia before, they held off under doctors orders. Don't know why, I'd yet to learn to ask questions at every step of the way. You have to learn to be a parent of a sick child, normally through experience , as it doesn't seem to be part of the natural parenting instinct.

Once the transfusion was complete, she was ready for the CT scan. The times of events on this day of days are a bit blurry but I think it was about 2pm that she went up to new scanning department. The chloral hydrate they'd given her didn't knock her out completely, it just made her into a belligerent drunk, shouting and swaying and slurring. She got very agitated as we lay her under the huge doughnut of the CT scanner. The radiologist nearly called it off saying that she'd need a general as she wasn't staying still. I managed to persuade her to carry on and with some assistance from me they managed to get her head strapped up correctly. Ciara then fell asleep.

The scan took about thirty minutes and Yvonne and I waited outside. We went back in the room and I asked if there was anything obvious. They said there was nothing they could tell us until all of the images had been compiled. We then went back to St Michaels ward with the swaying drunk. We were on the ward for about ten minutes when a nurse came in saying the doctors wanted a ultrasound and an x-ray done while she was still asleep (or at least acting like a drunk old duffer in a pub). So we trundled back up to radiology again. Ciara had the ultrasound first and while this was going ahead, I asked the doctor if he could see anything, he diplomatically changed the subject. I'm no radiologist but I reckon I might have seen what he was looking at.

Once complete, Yvonne and I were asked to wait in the ultrasound waiting room. A few minutes later we heard a small commotion outside, a lot of people gathering around and what sounded like Dr Monaghan saying, "Ah, they're both together, good". Then he, his team, Ciara's nurse and the radiologist, all came in to the room, closed the door behind them, and sat down.

I'll now quote from an email I sent to my mum the following day:

A Neuroblastoma is a malignant tumour of the neural system which has the job of taking messages around the body. Ciara's has stage 4 Neuroblastoma, the last stage. Ciara has a tumour around a kidney and it has branched off to affect joints in her legs, arms and skull.

It's more than likely affected her bone marrow and other places too. This disease most often presents itself at stage 4, and stages 1 to 3 are rarely diagnosed. In this case it presented itself with classic symptoms of juvenile arthritis. I've heard people describe cancer as being sneaky. This would appear to be true. However even if diagnosed as neuroblastoma in December, the treatment and prognosis would have been the same.

Last night Ciara was moved to the Oncology ward, St Johns, and we were introduced to our oncology consultant this morning. Fin Breatnach (pron: Branock). He's very nice, and VERY honest. Following today's MRI, he and his colleague, Anne O'Meara, went through the diagnosis, prognosis and the treatment.

...

They are expecting Ciara to make a good recovery after this session of therapy and be back at school leading a normal
life. The therapy process is very intense and is normally successful. Unfortunately it's a one off process. There's about a 70% chance thatit could return and repeat of the treatment would not help.

What I didn't say in the email, but what I can clearly remember, is what it was like to receive news like that. It was like have tunnel vision, I literally couldn't see properly. There is no coherent thinking and you're in a kind of stupor. It's only the release given by crying that allows you to think again. It was Dr Monaghan who told us the news, and it must have been very tough for him. I since found out that his wife had died of breast cancer only three weeks earlier. He didn't say the 'C' word, and even after words such as 'malignant' and 'tumour', I was denying it to myself. Ciara can't possibly have cancer, it's some other condition which uses those words. He gave us some description of what it was and said that the Oncologist would be round later to give us more details. What the hell's an Oncologist! The 'C' word being avoided again. I met a kidney doctor today, he didn't call himself a "nephrologist", he called himself a kidney doctor. No one is scared of kidneys.

Back on the ward, and after Ciara had her chest x-ray, we sat in stunned stupor. Curtains were pulled around us and a strict 'do not disturb' policy was put in place. Tea was bought round but Yvonne doesn't like tea and I can't even swallow it if it has one sugar in, let alone three. After while we were bought in to the staff room where the Anne O'Meara, an Oncologist (I suppose 'Cancer Doctor' is a bit sinister), explained what was going on. The neuroblastoma was a tumour of the neural system that affect immature cells, commonly children between 1 and 5. The tumour had branched out from the primary tumour and had reached most of her body and was probably in the bone marrow also. "So it's all over her?", said Yvonne. She let out the most soul wrenching wail I've ever heard, and the tunnel vision and incoherent thinking came back to me too.

Dr O'Meara has sad, sympathetic eyes, and she didn't hold back in telling us how serious this was. I kept waiting her for to say 'it will all be all right', but she didn't. Yvonne tried to ask if she was going to die but couldn't get the question out and I remember saying to her not to say it. The rest of the conversation is lost to me but I do remember her asking if we had any questions. Yes! How do we make this all go away and for you not to have just said all that?

A while later we were moved to St John's ward. A place full of bald kids and bedpans. I realised I was going to have to lose my repulsion to sick people really quickly if I was going to help Ciara. Ciara was given a private room and the three of us were left to our thoughts.

Yvonne slept on the ward that night with Ciara, and I slept up in the dingy parents accommodation as I didn't want Yvonne in that sad little room upstairs that night. We both slept like babies. I suppose a defence mechanism kicks in during these times. Considering I normally lose sleep over the smallest things, I was amazed that I could ever get to sleep again.

The following morning we were introduced to our permanent consultant, Dr Fin Breatnach. Another quote from the email to mum...

Tomorrow Ciara will have a hickman tap (a catheter) inserted in her chest. She will have a biopsy, probably of a tumour in her leg so they won't need to open her up fully. They'll do 3 biopsies, two to be sent of to Newcastle for the tests and one to be kept on file for research. Next they'll take sample from her bone marrow to see if that has been affected too. They expect this to be the case so no point hoping for anything else there. I think they'll be doing the cell retrieval thing but I don't the process with that.

She will then go on a very intensive course of chemo which should stop the pain and reduce the tumour in a matter of weeks if not days. This will repeat every 10 days for about 70-80 days when she will then be operated on to remove the primary tumour. After the surgery she will have further sessions of chemo plus radiotherapy and vitamin therapy.

After spending Wednesday afternoon and quite a bit of Thursday crying, I woke up on Friday feeling wondering why I didn't want to cry immediately. I had to think of nasty scenarios before I even thought about crying and they were easily stopped then. Surely I should be in an uncontrollable sobbing fit 24hrs a day! This was not the case. If someone had asked me month ago what I thought I'd be like two days after hearing Ciara had cancer, I would have told them I would be a useless wreck. However I had gained a strength from somewhere that I didn't know I had. First off I thought I must be callous and uncaring, but that's stupid. I love Ciara more than anything ever. She's my daughter. I mentioned this to Yvonne later and she was the same way. She too had found a strength and most of the time the worst she had was a sick feeling in the stomach. We weren't kidding ourselves though, we both knew that the odds were stacked against Ciara and we would need all the luck in the world to get over this. But there was hope and we remained positive.

Ciara was due to have her Hickman catheter and three biopsies on Friday afternoon so I thought I'd spend an hour going out to get some groceries and pick up some clothes from Dunnes. I went out to the car to find it had a flat, so spent an hour changing that. I managed to knacker up the jack so that's the last car that jack will ever lift. Got down to the shops feeling increasingly annoyed and frustrated. Bought a daffodil badge as it was the Irish Cancer Society's "Daffodil Day". I'd never noted that day before now. The shops didn't help my annoyance and frustration, after wasting 20 minutes trying to get a trolly, I found out some idiot had decided to separate Dunne's dairy goods, homeware, grocery and fruit and veg departments in to four shops, each with their own queue! Lucky I didn't have a gun otherwise all those grey and depressing people in Crumlin Shopping Centre would be riddled with lead by now.

Once back at the ward I found I'd missed all the pre-op information given to parents. Yvonne and I argued a bit. Yvonne managed to annoy me by not getting herself any breakfast then complaining how hungry she was. Anyway, we managed to sort ourselves out, I apologised for picking a stupid morning to go shopping and she thanked me for the PJ's I bought her.

While I was away changing tyres and having murderous thoughts about the general populous, Yvonne was told the medication programme that Ciara will be going through. She will be part of a study group that encompasses the UK and Ireland to trial a medication protocol. The trial includes three randomisation processes to decide a path for treatment. After the trial, the success of the different paths can then be assessed. There will be 70 days of chemo, stem cell collection possibly preceded by a stem cell growth drug depending on the first random selection, then surgery, then a randomly selected path of further chemo (MATS), then radiotherapy and vitamin therapy. The final randomisation for the trial will decide whether Ciara will take further immunotherapy. Thankfully Yvonne listened well and told me all.

On Thursday evening the nurse had noticed that Ciara was very pale and had taken bloods. Her count was very low still so she was given her second transfusion Friday morning ready for the operations later. In the afternoon she had her Hickman fitted, a biopsy of the primary tumour and marrow biopsies. One for testing and one to be stored for research. The surgeon told us afterwards that it was difficult to tell the primary tumour from the kidney it had surrounded and I wondered if that kidney may have to go. How will she be with only one kidney? Will I have to donate? Would it make any difference? They nipped the kidney while doing the biopsy so had to put a couple stitches in it. We were told she may have problems weeing because of that. All she has done since the op is wee!


Ciara right after biopsies and hickman operation

Ciara started the chemo the same night. A momentous occasion I suppose. Wednesday she has a CT scan...Friday she's a cancer patient. The anti-sickness drugs seemed to be doing the trick but Saturday she had a sickness while needing a wee scenario. I managed to catch neither so she managed to wet her pants at the same time as spewing congealed milk everywhere. Good work Dad!

She was very groggy on Saturday and spent the day sleeping but she was been in fab form Sunday and was out and about, on her feet, and being a laugh again. She still doesn't want anyone to be near her so hugs and kisses were still out of the question, but then that's been the case for about four months now.

She had no appetite yet but was been drinking well. Over the last few days she was given a laxative as she hadn't pooed for a week. Sunday she had a suppository which rapidly kicked her into touch. 15-20mins my arse, no sooner had the nurse left than she was dropping little
ping-pong balls in the bed pan. She needs to stay on a lax for a bit though as one of the chemo drugs (vincristine) and the morphine had
blocked her up.

Dr Breneach told us Sunday that her uric acid was up as a result of the chemo working. Apparently humans don't have the enzyme Urate Oxidase to break it down and neither do Great Danes and Irish wolfhounds. All other mammals do! Isn't the human body a wonderful thing, it develops a cancer that only affects 2 to 5 year olds, and turns off the gene to produce Urate Oxidase that helps then get better after treatment.

Yvonne and I managed to get a place in Ronald MacDonald House Saturday. The place is like a decent hotel only you have to cook for
yourself! Very impressed. It has fab kitchens, loads of storage, lovely rooms with TV and ensuite, a TV room, a kids room, a library
and a nice patio garden.

Mum and Tracy came over that Monday, it was fab to see them and it made all the difference. Dad came later in the week and stayed till Friday. I hadn't seen him for a couple of years and I'd missed him dreadfully. Ciara was looking excellent but was in a real strop. Her eye had gone down already and she was up and about without any pain.

Ciara had an MIBG injection in the following Thursday. This is a radioactive isotope that will show up the location of the tumours under x-ray. It took us a while to get it sorted as we had a useless nurse. She was a stand-in for our regular and was a bit dozy. She took us to the wrong place twice then abandoned us for 20 minutes while she went off to work out how to be a nurse. Ciara was given a flashing dolphin key ring by the nuclear medicine nurse which slowly drove me crazy through the night.

He morphine levels were dropped that day. This was good as it was beginning to make her very itchy. She'd already drawn blood on her shin from scratching and you can see the rash two weeks later. She was given another transfusion to get her back on her toes and some liquid paraffin to give her a clear out.

She started getting much better at letting people look at her hickman and other procedures like blood pressure. I guess she's getting resigned
to the fact that it's going to happen regardless of the fuss she kicks up. It's always a mild fuss and think she is amazingly brave.

Drug reps from a company came round to teach us how to use the InjectEaze to administer the G-CSF (granulocyte-colony stimulating factor) a growth factor that stimulates the bone marrow to make more white blood cells.. They were very irritating and wouldn't listen to a thing Yvonne was saying. We were very glad when they left so we could bitch about them.

Yvonne and I were expecting to be in the hospital for a good few months, and then, to our shock and awe, on Friday, we were allowed home!

She'd managed to keep her temperature in check after getting a kidney infection in the week which was what was making her temp peak over the last few days so she has been on antibiotics which seems to have made a difference. Our big problem then was keeping food down. She had an appetite Saturday morning and evening but it didn't stay down very long.

We were been given literally a crate full of medical stuff to take home, this doesn't include the carrier bag full of medication from the
pharmacy. We managed to get her medical card sorted before we left the hospital so we aren't paying a penny for prescriptions. We walked
into the kitchen and realised how filthy it was! I spent the first hour scrubbing the fridge with stolen antibiotic surface wipes.
Ciara was neutropenic, meaning a low neutrophil count in her white blood cells. These deal with infection defence so we're a bit
paranoid. Yvonne administered her first injection Friday. Bit nervous but better the following day. Ciara's pain has completely gone, even without pain killers. We were told last week that the tumour is very chemo sensiitive, it's doing the job!

Ciara was back in for session number two Monday 2nd of April (no private room this time) and I went back to work for a bit on the Wednesday. Since then she had Easter at home but was a bit sick to enjoy the eggs. Last Thursday her hair started falling out, and now she is almost completely bald. She is still amazingly cute though. She's one of those kids who still look good with no hair. The sickness subsided after the Easter weekend and she had a good few days at home with her mum. Thursday, we all went back to Crumlin for chemo session number three, which she has just finished. There was a bit of a worry about her kidney not working properly, her wee was brown and something called 'casts' were in it, which is a sign of kidney damage and was probably a result of the biopsy. However a scan showed that all is OK and for now the kidney is doing everything it should be doing. Amazing considering a bloody great tumour is wrapped around it. She's so stubborn, not even tumours will stop her kidneys working.

Wow! That's it, catch up complete. It's still the dead of night. Our roomy is still snoring our heart out. Ciara just used the bed pan for the twelfth time this evening and we're going home tomorrow!


Ciara this morning...Wow!

My God...who the hell is ever going to read this far?

Funny Faces

Before we all start getting gloomy about the events of 21st March, check out these pics of Ciara taken this morning. Click on the pic to see the full web album. Taken just after her dad tied his first bandana. Not sure I did a good job but I think she looks fab!! See...it ain't all bad.

Funny Faces In April

OK, I want to start writing about what's happening now rather than what has already happened. So this evening I'm going to rattle through most of the last three months in one or two big ol' post. I warn you now, I will go on.

Now to cut a short story long...

Two days after Ciara had the operation to clear the fluid on her hip joint, Dr Monaghan from the Medical team advised us that she had inflammatory arthritis. He was keen to point out that this was arthritis with a small 'A', meaning she just had an inflamed joints and was put on a course of steroids to try and shift it. We were told it might be something that we can get rid of for all or it might have been something that comes back through her childhood. The same night she had a 'brown alert' in the bed so was put into isolation in case she had a bug but it was probably down to the antibiotics though.

She was kept under observation in isolation for a few more days while her temperature was monitored. She was up and about a bit but it was very painful for her but still she tried. During this time Orthopaedics decided that there was not much else for them to do and her care was passed on to the Medical team under Dr Monaghan. Unfortunately at this point she was anaemic so they wanted her in for a few more days. Once her temperature had stabilised, the blood counts were better and the pain had subsided, she was weened off the steroids and sent home with orders to take an iron supplement called galfron and to have Neurofen and Calpol for the pain. This was Tuesday 23rd January so at this point, Ciara had spent pretty much a month in hospital apart from a small break. We were asked to come back for assessment in a few weeks. Dr Monaghan suspected at this point that Ciara had a form of Juvenile Idiopathic Arthritis, and the check-up in March would be able to pin-point what type. The word systemic was used quite a bit but doctors don't seem to like labelling a condition until it's been confirmed.

After spending January in a strop, it was great to see Ciara in a good mood! If she's not feeling well, or is sore, she will be in a bad mood. It's as simple as that, so the good mood was an excellent sign. However only one week later we had to call the hospital again as she was in so much pain. She hadn't really slept properly since she was discharged and would continuously cry with pain through the night. Our Lady's told us to bring her back in to be readmitted. We couldn't bring ourselves to tell her this at the time and only told her once she was on the way in the car. Yvonne and I could see her losing trust in us so we decided from now on the truth would be best, even for a three year old. She was readmitted on 31st January for further observation. Things were getting frustrating.

Thankfully she was only in for a couple of days, and we managed to get up to her grandparent's in the North for a little belated Christmas dinner. Not the happiest time for her though as she was still in a lot of pain. The steroids we were prescribed reduced the pain a bit but walking around was still sore and so she wasn't much of a party girl that weekend.

Unfortunately Ciara didn't make much improvement through February. She started complaining of pain now and then in her back, her arm and sometimes her jaw. All this still pointed to some kind of arthritis. Her temperature was peaking frequently and every now and then the pain was bad enough to make her scream. By late Feb she was limping again and complaining of a sore back. A call to the hospital had us down at our GP for a further course of steroids. This was the first time we'd seen our own doctor about all this, and he was honest enough to tell us he wishes there was more he could do. Unfortunately at times like these, local GPs seem to only be good for writing prescriptions.

At the end of February she was unable to sleep and was moving from room to room all night trying to get comfortable. A further call to Our Lady's on Friday 2nd March told us to monitor over the weekend and call back on Monday. Over the next week she did improve, the pain went down and her temperature stabilised, but our life was on hold waiting for the 15th March assessment date. The we would go through what's been going on and be given a diagnosis. Which Juvenile Idiopathic Arthritis will it be? Oligoarticular, Polyarticular or Systemic? Yvonne and I were making plans for dealing with a long term and painful condition that could stick with her into her adult life and could even put her in a wheelchair for much of the time. We thought she was going to have it hard then and it was very upsetting. How little we knew.

As the days lead up to the assessment, things didn't get any better and she was starting to get a sore head. All this time we put every symptom down to either a result of the steroids or arthritis. We were so wrapped up in that one thought that we weren't considering anything else. Then on Wednesday 14th March, a day before the assessment, her left eye started protruding and looked very peculiar. And so the assessment came about and Dr Monaghan asked that she be readmitted as soon as possible for a complete re-run of tests and for the eye doctor to have a look at her. He believed that the arthritis had progressed and was now the more serious polyarticular variety and mentioned that she will be going on methatrexate, a disease management drug used for long term medication. As it was St Patrick's Day weekend and not much would be happening at at the hospital, he sent us home and asked that if there were any change to her condition we should call his team. So we were sent home again due to come back in on Tuesday. That weekend we managed to get to see the parade at Newbridge, which Ciara loved! She was on excellent form and really enjoyed herself.

However she had a very bad night on Sunday night. Her temple had swollen up that evening and all through the night she was up every ten minutes trying to wee but failing. Monday we weighed up bringing her in early and face a wait in A&E. It was an easy decision. She was admitted through A&E on Monday 19th March to St Michael's Ward, Our Lady's. Even then Yvonne and I were thinking "Arthritis, Arthritis, Arthritis". Looking back now it seems so bloody obvious that it was something else.

By Tuesday morning it was made clear to us that the doctors weren't even thinking about the Arthritis, that would have to wait. The swollen temple and protruding eye were the main cause for worry and none of them had seen it before. They managed to get a slot for an MRI that day but due to a confusion with fasting, she lost the spot. They tried a CT scan but she was too agitated and wouldn't stay still so she would need to have one the following day under sedation. She was also booked in for a full body MRI scan towards the end of the week.

All this started to worry the hell out of us. Yvonne was told that it could be a viral infection causing the swelling or something more serious. She called me at work to tell me what was going on and I got the worst sinking feeling I'd had since this all began and needed to go and find a dark place to hide in for a bit. Her anaemia was bad again and she was due to have a blood transfusion the following day just before the CT scan. This was the scariest thing! Poor Ciara having a transfusion! That only happens to really sick people doesn't it?

Tuesday night Ciara was very unhappy. She did enjoy a movie with me though. We watched Ice Age 2 on my laptop. This was unusual in itself as she doesn't like movies after a bad experience while watching Finding Nemo (scary bit with the shark, bloody Disney!). Midnight that night I sent an email to my mum giving her an update of what was going on and telling her not to worry.

St Joseph's Ward and Ciara's first operation - 9th to 11th January

For anyone who's ever been to Our Lady's in Crumlin, the first thing they will tell you is that it looks a bit of a dump. We'd just come up from a shiny new paediatric ward at Portlaoise and in comparison Crumlin looked very gloomy. Lot's of faded pics of wonky looking Mickey Mouses and Mr T's. When Ciara was admitted to St Joseph's, Yvonne and I were feeling very down about being there but it wasn't long before we realised it was just a façade. It was soon obvious that the health care at Crumlin is second to none.

Ciara had been fasting since about 2pm in Portlaoise, as they thought they might need to operate on her in the Evening. Sure enough, she went to theatre at 9pm to have the fluid drained from her hip. The fluid showed signs of septic arthritis but no active bugs, and so had to be opened up cleaned out. She now has a very neat 2 inch scar as souvenir.

At this point we were under the impression that there was a relation between the Transitory Synovitis (irritable hip) and the Septic Arthritis but it was unknown what. I mentioned this in January 9th email:

Now the first problem with hips was the right hip on Christmas Day. This was Irritable Hip or Transitory Synovitus. This is like a cold that effects hips and the only treatment is rest and calpol etc to ease pain and keep temperature down. This normally clears up in about or week or so. And it would appear that it did. However the same root cause of the Irritable Hip in the left hip could have caused the septic arthritus in the right hip. We'll never know.

Her temperature shot up again that evening to over 39 degrees and so she was booked in for another load of blood tests the following day. It looked like she had a urinary tract infection in the tiny amount of wee she'd done and she hadn't pooed for days. At this point, we blamed the pain in her legs for putting her off wanting to go.

The following day she had her blood tests, an x-ray and ultrasound of her hips, and an x-ray of her chest for some reason that wasn't clear. Results came back negative for infection in the fluids from her hip and no sign of damage to the joints. She had some movement and was given an IV antibiotic to clear up an ear infection and she was monitored then to see if the other hip was going to play up.

Over the next couple of nights, Yvonne or I took it in turns to either sleep on the ward on a 1 inch floor mattress, or have a bed in the gloomy and depressing parents accommodation at Crumlin. We were just waiting for he temperature to stabilise now and to find out what was going on.

A painful New Year - Early January, 2007

We managed to spend New Year at home and even managed to get Ciara out on her new roller-skates, but it was clear to us that Ciara was not right. She was due back in for a check-up on the Thursday following her initial release and we voiced our concerns about Ciara's continuing pain. The docs at Portlaoise told us to expect up to 6 weeks for Ciara to recover from the irritable hip so we let it be. Back home on Friday night her temperature peaked again, and she could not sleep with the pain. She was crying "ouch" every few minutes.

On Saturday 6th January, we decided to take her into hospital again as she was clearly in a lot of pain. Any time we've had to go to A&E recently one of us has had to be admitted so we packed our bags for an extended stay just in case, we getting used to spending Bank Holidays in various hospital's A&Es. Again we were reassured that everything was as expected and that the irritable hip would clear up with time and rest. So we were back home again and unpacked our suitcases.

The following day, Sunday, after a very bad night of pain and fever, we took her back to hospital. No child should need to go through that much pain without medical attention. This time she was admitted. What followed were the normal round of blood tests, ultrasounds and x-rays. We were informed that they were trying to rule out anything sinister like rheumatic fever and juvenile arthritis. They found fluid on a different hip to the one she had problems with at Christmas and decided that Ciara would need to have an orthopaedic check-up. Once the tests were completed, we were shipped off Dublin the same night.

And so, on the evening of Sunday 8th January 2007, we discovered Our Lady's Hospital for Sick Children, Crumlin.

First trip to hospital - Christmas Day 2006

For a couple of weeks before Christmas 2006, Ciara complained now and then of sore legs while we were out for walks. She had a cough and cold mid December, her temperature was going up now and then, she was pretty gloomy and off her food. This all cleared up easily enough and she seemed fine. However she didn't want to go to playgroup and would kick up a serious fuss whenever she went, enough to cause the playgroup organisers to call my wife, Yvonne, asking her what to do. I'd even sent an email to my older sister asking for advice on getting Ciara to playgroup without her causing a major scene.

On Christmas Eve, 2006, Ciara started to limp and was visibly in pain. By Christmas Day, she could hardly walk. She was such a sweetheart though, sitting in bed saying "this is the best Christmas ever!" after finding a cheap plastic dinosaur in her stocking. At that point she thought that was all she was getting but was as happy as anything. We decided to let Ciara have her Christmas morning before heading off to the 24 hour County doctor to get her checked out.

The doctor thought it may be something called Perthe's disease, a rareish ailment affecting kids, and advised us to go to A&E, Portlaoise for her to be looked at. Ciara was admitted for observation after a few hours in the A&E waiting room.

The following day, St. Stephen's Day, after an X-Ray and Ultrasound she was diagnosed as having Irritable Hip, or Toxic Synovitus. This is common enough really and often affects kids who've had a cold or flu. The treatment is rest, relaxation, TV, chocolate, that kind of thing. She was kept under observation for a bit as she was getting a temperature now and then. Ciara was allowed home the following Friday, 29th December 2006.

She wasn't at home very long though...

Catching Up

On Christmas Day, 2006, my three year old daughter, Ciara, was admitted to Portlaoise Hospital, Ireland with suspected Irritable Hip, a benign condition easily cured with a couple of weeks rest and relaxation.

Three and a half months later, I am the father of a daughter critically ill with Stage 4 Neuroblastoma, a rare child cancer with a poor prognosis. This blog will document, for myself more than anyone else, what has happened to us over the last few months and will be a journal for what is to come to us as a family. For the first few posts, I will catch up what has been happening.

And so it began...