Sleepless nights

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!

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

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

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

Change In Chemo

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.

Not much hair, but so beautiful

Unscheduled Home-time

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.

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

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

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

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...