Stuffing well and truely knocked out

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.

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

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

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

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

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

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.