The Long Kiss Goodnight

Caitlin finished the last of her chemo in this block this week at Ipswich hospital with some Vincristine. This is the quiet period in which her counts usually drop and she ends up in hospital.

Predictably this is exactly what happened! Caitlin had a temperature and ended up in Ipswich hospital. The cause of which is still a bit unknown, but her bum was so sore it was painful to go to the toilet. It had put her off her food as she knows that eating eventually means pooing. It's been a bit of a struggle as just wiping her after going for a poo has had her screaming. Hopefully this will calm down and she can go back to eating her favourite dinner: Cottage pie!!!

This coming week, she's due a blood sample which signals the beginning of her 2 year Maintenance stage. It's been the part we've been aiming for since January. Minimal trips to the hospital, and a more regular routine. It means Caitlin's hair will grow back, and she can start back at school, and enjoy being a little girl again. Since January, we've lived through the worst experiences, and seen awful things to amazing children like Caitlin, and it's made me appreciate everything so much more. This year will be etched in my memory for the rest of my life, and having seen Caitlin go through so much it fills my heart with pride looking into her defiant eyes.

It also fills my heart with sadness as this is going to be the last post in the Blog. This Blog has always been about Caitlin and her progress against Leukaemia, and I feel this is as far as I can take it.

Your comments, and presents to Caitlin, and words of encouragement, have gotten us through the darkest nine months of our lives. A thank you just isn't enough to justify how much of an impact your words have meant to us. Your comments and knowing that you have been reading have literally kept us going. From the bottom of my heart, thank you.

I will leave you with my favourite picture of Caitlin. I can't wait for her to be in a Rapunzel dress with her long blonde hair again.

Thank you for reading this Blog, and for being with us for these nine months. Through thick and thin, hell and high water, she's come out the other side fighting, and she always will.

Luke

xxx

Unstoppable

We're currently sitting at Addenbrookes hospital, waiting for Caitlin to have her Vincristine & her Peg injection.

Last week Caitlin had her Cytarabines but her blood count dropped on Thursday, meaning a transfusion was needed on Friday. She was a star though, she managed to sit through the 4 hours without getting too bored & restless. It just makes it easier for me which is always great. As you can imagine, trying to keep a 5 year olds attention for 4 hours is quite a task, but Caitlin is so immune to it now, either that or we're more prepared!!!

Caitlin just keeps on plugging away & its amazing to think that January was the start of all this. We're 2 weeks (or 2 hospital visits including this one if you like) from Maintenance, & then, who knows.

The post title does signify Caitlin's relentless way in which she carrys on through the treatment, & signifys the passing of Tony Scott today, who was one of my favourite directors.

The Longest Day

Today, after trips to both Basildon & Ipswich hospital in the week, Caitlin & I return to Addenbrookes for the day, & what a day it is!

We had to get up early for Addenbrookes as she's due a Lumber Puncture, which means being Nil By Mouth as of last night. The journey in was pretty good, considering how tired we both were!

Caitlin was checked over by the doctor & once again remarked on how well she's doing. It's always encouraging to hear how well she's doing from others, especially the doctors. We could say she looks well, but they are the ones who truly know & it's reasuring for us.

She came round from her Lumber Puncture a little while ago & straight away wanted the special sandwich Daddy had made her! Heart shaped ham with special heart shaped bread that I'd cut for her. Since then she's pretty much eaten everything I put in the lunchbox, as her favourite cook isn't in today.

We're now waiting for her Cyclophosamide, which is going to take a long while, hence the post title. The actual chemo itself doesn't take long, its the flushes afterwards that take around 4 hours!!!

I'll update later, but for now I'll leave you with a pic of the little lady herself!!

XxX

*update!*

It's 5.30pm & in a few minutes Caitlin's pump will sound the alarm. We're hungry, tired & irritable, but I've promised Caitlin McDonald's as its going to be quite a while before we get home. She's been really good today, only really complaining that she's hungry, which soon stopped after a blackmail of the Mc word!! I usually hate her having takeaway but she's earned it today.

She's now due chemo all week with the Ipswich Oncology nurses coming to us to give her Cytarabines which isn't a problem.

All I've got to do now is muster up some energy to drive home.

XxX

*update*

After a nightmare drive home in barely visible conditions we made it safely home. It's 8.15pm, & I'm now cooking my dinner. We've got 15 minutes before we can give Caitlin her Mercaptopurine which starts again today. We have to be 2 hours clear of her eating & 2 hours clear after giving the chemo before we can give her her feed, which makes it a pain but, is an essential part of Caitlin's chemo.

Tomorrow Caitlin starts her Cytarabines & the last month before Maintenance.

XxX

The Fighter

Caitlin looks like she's going to be discharged today, she had a blood transfusion yesterday and along with the antibiotics she's been having her temperature has stabilized. I've got to speak to Addenbrooke's to see if she'll be allowed to have chemo on Monday. We're literally empty on Caitlin's feeds as well so hopefully we can work out when there should be more arriving.


Caitlin is doing really well considering, I'm just looking forward to getting the girls home and making sure they're fine.

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