Home Alone 2

Alisha & the girls have been down to see her mum while we had some work done on the house (no hot water for 4 days but that's another story). Having not seen her family for a while the girls stayed for another week to catch up with everyone properly.

Unfortunately, Caitlin had a temperature of 38.4 today & had to go to Basildon Hospital which is where she is now. She's had different antibiotics as a precaution but her temperature has been fine since so fingers crossed it was just a hot car ride that caused it. She'll be there for at least 2 days to make absolutely sure her temperature stays down but she's fine and Alisha is ok too. As soon as I have any updates I'll post it up.

This post comes live from a hot bath tonight. Sorry about that.

XxX

Traffic

Monday was a return trip to Addenbrooke's with a twist. Instead of coming home afterwards I was to drop Caitlin off at Nanny Sally's where the girls would be all week as we're having a new boiler fitted at home.


We got to Addenbrooke's at 11am and it was ridiculously busy!!! I don't think I've ever seen it so busy. We sat with some friends we'd made who had been diagnosed at the same time as Caitlin, and were currently two weeks ahead due to the setback of chickenpox. It was the dreaded "long day" for them which meant an early start for a lumber puncture and then all day chemo till very late in the afternoon. That's what we have to look forward to in two weeks!


Caitlin's chemo was fairly routine but I did get an opportunity to meet the child psychologist and a chance to go through what Caitlin has been like and what we can do to counteract her attitude. It was fairly helpful and hopefully will be beneficial later on.


The post title then becomes obvious, M11, M25, A12. I sat on all of them for quite a while getting to Grays and then eventually home. Thankfully I had the cars air con sorted a few months ago as poor Caitlin would have been so uncomfortable. Luckily, she slept all of the way home, and missed all of it.


Apart from the steroids which Alisha is giving her, she hasn't got any major chemo for two weeks now, which will be the long day...


I'll update before then.


xxx

Hard Rain

It's been a while since I last did an update on the blog, I'm sorry for that. It's truly been a busy time, both emotionally and physically for all of us.


Caitlin has resumed her chemo and on Monday we had our first trip back to Addenbrooke's. It was an early day for us as Caitlin had a lumber puncture due, as well as chemo after that. It's always an unusual morning on procedure days as I tend to creep around like a ninja until the last minute and then wake Caitlin up as she does make a lot of noise and will wake everyone else up! The trip there is usually filled with questions from behind me whilst I concentrate on the road, ranging from what chemo is she going to have today? What can she have for dinner after her special sleep? Why is it raining? My personal favourite though is when are we getting there?!!


The consultancy with the doctor was fairly routine, Caitin had put on a bit more weight which is always good, and she generally looked really well. We spoke again about her anger issues and we're due to see the psychologist in a few weeks to see which direction to take next. She went to sleep under anaesthetic really quickly which then gives me time to go and grab a coffee and something to eat. It's a running joke on the ward now that if Caitlin is Nil By Mouth, then so am I until she goes under! It sucks!! As Caitlin isn't eating as much at the moment, she doesn't tend to worry too much, but my stomach is growling by 10am!


She started a new drug on Monday called Doxorubicin which is in a small IV bag and is a scarlet red colour. She took it without any troubles which is always a relief. There's always that horrible doubt that she'll have a reaction to new drugs but it went off without a hitch. We bumped into some familiar faces while we were there and it was good to catch up with them and see the progress that they're making. A little girl who we used to see fairly regularly is only 17 months old and is now in the maintenance stage and now has loads of hair again!! It was lovely to see her and to see how quickly she's bouncing back from the treatment. 


Thursday was a trip to Ipswich hospital for Vinc and Peg. Peg is the injection, and Caitlin knows all about it!! We struggle to conceal what she's about to have so we don't worry about it now. She's become such an independent little girl that she tells you she will be brave for it! It's still not a nice experience for her or us as Caitlin does get quite upset by having a needle jabbed in her leg and who could blame her? We have to wait an hour at the hospital after having Peg as it may affect her but as usual she's fine with it. She got to play in the play room and dress as a fairy whilst daddy sat on a kiddies chair doing paperwork!!! Her Vinc was just a push into her Hickman Line so literally took seconds and we were home.


We're due back to Addenbrooke's every Monday for the next three weeks for routine chemo which is fine. We've also started giving her a familiar favourite in Dexamethasone at home. This is the steroid that made Caitlin eat us out of house and home before! She has it for a week and then has a week break before commencing for another week. We're not quite sure what the effects on her will be with this being broken up so we'll have to wait and see.


The Post Title? It was always going to be a lot deeper than a simple reference to the weather. The rain we've been having has summed up perfectly how we're all feeling at the moment with all the bad news our family and friends have had, I can only hope that at some point the sun will come out again.


xxx

Red Heat

I've been updating sporadically recently, mainly whenever we go to hospital or when something happens. I will update more frequently soon, I promise!


Due to the ridiculous weather we're having (a true British moan if I every saw one!) it's been hard to keep Caitlin cool, especially at night. Even with the fan on full blast she's still been really hot and it's been causing Caitlin's dressing over her Hickman Line to come away from her skin.  Today it was virtually off on it's own! A quick trip to Ipswich Hospital to change the dressing and everything is back to normal. On Wednesday, Caitlin is due a blood sample and that will give us an indication of the next step. Hopefully we'll be back on track, albeit, two weeks behind but back to the schedule.


It is a busy time coming up and I'll scan the flow chart in this week so you can get an idea of what we have going on.


Until then.
xxx

Total Recall

Again, whenever I open the laptop to write the blog it's usually bad news or to say how exhausted we are. It is bad news, England have just been knocked out of the Euro's. I know, we didn't play well, but deep down you still believe we can do well.


Oh yeah, Caitlin. Caitlin is back in hospital after being discharged for a whole 16 hours before she was back. A night of diarrhoea, and a few more spots is enough to bring her back in for more anti-biotics and anti-viral fluids, observations and hopefully solid poos!


Unfortunately though, Caitlin was also sick tonight and with it came her NG tube. Apparently it took 40 minutes to get a new one inside her,  which included Caitlin screaming, sticking her finger up at the nurses (that's a new one), threatening to swear and trying to bite and kick. It's something that needs sorting soon as we can't keep going through it.


That's all we know at the moment really, her chemo has been pushed back at least two weeks to let her counts recover but we don't know when that will be.


When I know, I'll post it up.


xxx

Contagion

This week has probably been one of the roughest we've encountered so far. It started on Monday with Caitlin needing a blood transfusion after a routine sample on Sunday. She played up on the Sunday and we were in Ipswich Hospital all day on the Monday, Caitlin kicked off massively! It was the worst she had been, and something that is being monitored by both hospitals as this aggressiveness can't continue. We're facing the brunt of all of Caitlin's anger and the added stress on us is so intense, its affecting us all.


Alarm bells started ringing for a different problem though on Tuesday. Caitlin had a blistery spot appear on her neck, which soon followed by a few more. Today, she was getting covered in them early on. It looked like our holiday fears had been realised, and Caitlin had chickenpox.


Ordinarily, Caitlin getting chickenpox at this age wouldn't be too much of a problem, because she has Leukaemia, it's dangerous. It can interfere with the chemo and most of all set us back hugely in Caitlin's treatment. We've been with Caitlin in Ipswich Hospital all day, there was talk of her being admitted to Addenbrooke's but they're happy for her to be treated at Ipswich. She's on anti-viral fluids and anti-biotics to combat the chickenpox and all we can do at this stage is wait.


I think this is rock bottom for us currently. As parents we're really strained and its been increasingly tough on all of us. This is to be expected but you're still not prepared for it, there's no manual on how to deal with the emotions you go through, just an expectancy that it will happen at some point. With Alisha and Caitlin at Hospital and Jessica and I at home, it always feels like the family is split and the feeling of isolation and sheer helplessness just overwhelms us. We can't feel sorry for ourselves as we have to be happy for the girls, we have to stay strong and make sure they're ok. As always this setback won't stop us from getting to where we want to be, it just might take us a little longer than we'd hoped.


I'll leave you all with a few pics of Caitlin from Monday, a lady whose daughter had Leukaemia brings the lovely animals in for the kids to stroke and feed:

I'll update when we know more. I'm not sure when that will be.


XxX

Old School

Sorry, I've been meaning to update this the last three days but I just haven't had chance. So much has happened, where do I start?


Well, England beat Sweden, Russia just got knocked out, and David Cameron squirmed through his questions in the Leveson Inquiry.


More importantly though, Caitlin went back to school! Wednesday was the first time Caitlin wore a school uniform since breaking up for Christmas in December 2011. Amazing when you think back to it all as it seems like such a long time ago. She wore a blonde and pink wig to school and the kids all wanted to play with her and be near her in class, everyone made her feel welcome, like she had never been away. We didn't know how long Caitlin would last as her energy levels are so up and down, but we rang the school mid-morning and she wanted to stay for lunch! We picked her up again at 1 as she still can't quite manage a full day, but everyone was so happy that she was back.


She had a long sleep that afternoon as she was exhausted! On the Thursday I got a phone call saying that Caitlin was complaining that her Hickman Line was hurting her. A visit to the hospital half an hour later and the doctor was checking her over and concluded that she was fine, she had a routine blood sample taken and we were on our merry way.


We received the phone call for her blood sample results later that afternoon and typically, they were low, Caitlin was Neutropenic and wouldn't be able to go back to school until her counts picked up again. Typical!


It brings us to now really, sitting here writing this with a beer, some heavy metal and the realisation that a blood transfusion is just around the corner.


I'll update when we know more.


xxx