All Quiet on the Western Front

It's been a few days since I last updated, so here is the latest, which is... not much!

We're back at week 10, and back on track chemo wise. Caitlin's temperature is stable, she's taking her chemo and medicines well, and her feeds are going well. Due to the nature of the Mercaptopurine and the fact Caitlin has to be nil-by-mouth either side of it, we're giving her feeds really late, and the little sleep we're getting is catching up with us fast!!


Caitlin has had a few visitors this week. Earlier in the week Grandma Sheila and Nanny Jane came to see her and she had a fantastic day, playing with stickers, chatting and looking at old pictures! Tonight she had her punching partner Jacko and his brother Anthony come round and they caused absolute havoc before leaving (pretty much the norm when my friends are involved!), but again, it's lovely to hear her laugh and she's done plenty of that with her sister Jess.


On Wednesday, Caitlin has her 2nd Hickman Line, this time on her left side, which is a slightly harder op as the line has further to travel and isn't a straight line. It travels in an s-bend and probably means a longer op.


I'll update again, with the flow chart so I can keep that updated at the same time.


xxx

Back To The Future Part 2

Today we went back to Addenbrookes, only for the day I'll quickly add!! Today marks a return to Caitlin's chemo & hopefully normality, whatever that is these days.

Before I talk about today, I'll go through yesterday. Caitlin was discharged at about 1.30 & we couldn't get out of Ipswich hospital quick enough! At just under 4 weeks in hospital you'd have thought Caitlin's spirit would be dampened, but our little girl is made of stuff stronger than Wolverine's bones. (I had to get a comic reference in at some point!! It was only a matter of time!) She skipped out of there & virtually jumped into grandads car for the ride home. Jessica was ecstatic to see her sister again, and Caitlin was soon playing with Shea, Skye & Nanny Sally & Steve.

Night times brings the biggest change to our routine now, in that Alisha gives Caitlin overnight feeds to make sure she's getting everything she needs nutrition wise. We have our own stand, pump & feeding pouches that doesn't look very appetizing, but since its going in through her nose it doesn't matter too much! The feed is on a 12 hour cycle to give her the right amount according to her height & weight. This can be adjusted if Caitlin's dietitian isn't happy with her progress.

Today was Caitlin's long chemo day in which she has Cyclophosphamide again (yes, another cannula!) This only takes around 30 minutes to give but she needs over 4 hours of fluids after as it dehydrates her body. She also started her Cytrabines again, which with the amazingly quick needle work of the Addenbrookes nurses, required a cannula-like needle in her leg. It looks like a mini port is probably the best way to describe it. As she hasn't got her Hickman line back in yet this is the easiest way of giving her that type of chemo. This will be administered over the next 3 days by the community nurses at Ipswich who will again come to ours to give it to Caitlin.

We're basically back to week 10 on our flow chart (which I will scan soon, I promise), this means Mercaptopurine again which we can alternate between giving it orally or through her NG tube. It does make things a bit tricky time wise as she has to be nil-by-mouth for 1-2 hours before giving her Mercaptopurine & 2 hours afterwards to give her feeds for the chemo to have the most effect.

She's currently in bed & we have to wait till 10.50pm to give her feed. Luckily we should be able to do this without waking her up, otherwise we will have a grumpy little girl to deal with in the morning!

XxX

Leaving

Caitlin has got one last antibiotic to have, a blood sample & then we can go home! It's been a while since Caitlin has slept in her own bed & long overdue. She's not eating much but is still in good spirits. I'll update tomorrow from Addenbrookes.

XxX

The Visitor

It's been a fairly uneventful day, colouring, watching telly, playing games. The doctor saw Caitlin this morning & said that after the antibiotics tomorrow morning we'll be heading home.

Auntie Kate, uncle Mark & cousin Phoebe came to see us this afternoon which was lovely for Caitlin. It really picked her up & loved playing with Phoebe. She's relaxing in bed watching a DVD at the moment. Hopefully we can start getting back to normal after this weekend.

XxX

Quick Change

We're finally out of Addenbrookes hospital!!!

& now we're in Ipswich hospital!!! I'm staying with Caitlin to give Alisha a break & spend much needed time with Jess.

Monday we're back at Addenbrookes for a day but I will update about that then.

XxX

A Simple Plan

Caitlin was due to come home for the weekend & then go back to Addenbrookes to have another Hickman Line refitted, keeping her in for a little while after to make sure everything is ok.

That changed again last night with the results of her cultures of the Hickman Line that was removed. They found nothing wrong which causes another problem: what was causing her temperature? This is then when they told us that Caitlin would be going back to Ipswich...

Hospital.

They want her to have a course of antibiotics & hopefully chemo as well with maybe a possibility of home either Sunday or Tuesday.

At this point it's speculation as to when Caitlin is home, as we've found out, there's not much point in planning anything.

UPDATE!

We've just seen the doctors. The "plan" is that Caitlin will be heading to Ipswich hospital as soon as they have a bed available. She'll be there till Sunday afternoon as she's having antibiotics, then back to Addenbrookes on Monday as an outpatient for reviews. Basically to get back on track with the chemo, we'll have the community nurses come round to administer chemo the following days. We've got a date of April 4th for her new Hickman Line & that's as positive & up-to-date as we can get.

XxX

Executive Decision

Yesterday, we had 6 doctors come in to see Caitlin at once. A new record for us!! The doctors went through what they thought was the next step & that included taking her Hickman Line out.

This was a bit of a hammer blow to us, as everyone knows how Caitlin is with needles (not great, for those who don't know) & the Hickman line was the cure for that. There was no clear signs that the Hickman line was the cause of the temperature changes but at this point, but it was a case of ruling things out one by one.

Caitlin went down to theatre at around 12 & was back about 45 minutes later, minus one Hickman line, & plus one cannula & NG tube. She was calm this time around as Caitlin was like the Exorcist last time around. She was sore from her op & very quiet.

Her temp didn't rise above 37.4 during the evening. I got a text somewhere between midnight & wakey wakey time that Caitlin's cannula had stopped working & she was in pain. They changed her cannula at 4 o'clock this morning to her right hand & it's been fine.

Her temperature hasn't risen today & things are looking up. She's now out of barrier so can go into the play room & where ever she wants. I'm not going to jinx anything so I won't say anything, I'll leave it there & try to stop Jess from eating a ladybird.

XxX

The Thin Red Line

It's been a pretty torrid month & it doesn't seem to be getting any better. Caitlin has been sick again, she's not eating & the decision has been made to take her Hickman Line out.

Seems like we're going backwards at the mo. The doctors are taking it out to rule out the risk of infection there. It might not even help but its got to be ruled out. It means that Caitlin is going to have an op tomorrow to take it out, & when she wakes up she'll have a new NG tube & a cannula in her hand. She's not going to like that very much, but there isn't much option. The doctors have got to find out what's causing Caitlin's ever changing temperatures & get her back on track.

Tomorrow is going to suck.

XxX

Quarantine 2

Caitlin has had an up and down day today. She was thrilled that Gaz came along to see her and we spent the first few hours playing with her toys and playing games to pass the time as Caitlin had antibiotics. Once they were finished, we were allowed to take her out for a little while. Not too far but anywhere is better than staring at the same four walls.


We didn't go out for long but when we got back Caitlin was tired again and shivering so we tucked her into bed. She wasn't hungry, she didn't want to play, she just wanted to sleep. Gaz put a film on for her and she just lay in bed right up until we left.


There's been talk of taking her Hickman Line out as the infection may lie there, plus it would help regulate her temperature. It would mean going back to cannulas which is something we hadn't even thought of again as the Hickman was put in to help the doctors give chemo and take blood, without having to go through the struggle of needles with her. Caitlin has been really lethargic and not herself today, everyone has noticed it. It's the first time she's been like this since she was first diagnosed which is a blow to us as even though her body is going though hell, Caitlin is always still perky and happy. This always gives us a lift and helps us be strong for her, so we can only hope this passes as quickly as possible.


I was literally just about to hit the Publish button when Alisha rang. Caitlin has been violently sick, and brought her NG tube up with it. The doctors aren't going to put a new one in tonight, they'll do it tomorrow.


I'll update tomorrow as we'll know what happens next, but with sickness comes isolation, so it's a safe bet that she'll in barrier again.


xxx






xxx

Mother's Day

Happy Mother's Day!

I know the girls love their mummy!

You'll also notice I've changed the title of the blog. I'm sick of looking at it and sick of dignifying it with it's own blog. This blog is about Caitlin's recovery from Leukaemia and quite frankly, this is the diary of a princess.

Caitlin has fluid on the back of her neck. We're not sure what's caused it but the doctors have done blood tests to see what is going on. It's making her feel sluggish and tired, and generally not herself. I'm going up with my friend Gaz in a little while, and Caitlin adores Gaz so hopefully it'll brighten up her day a bit.

Update later.

xxx

Sister Act

For the first time in 2 weeks, Caitlin was allowed to leave her room & go for a walk.

This was the news I received as we (mum, dad, Jessica & I) headed to Addenbrookes to see Alisha & Caitlin. Probably the best news we'd had in a while. Especially as it meant Caitlin could see Jessica. She was on her antibiotics when we got there so we all played games & passed the time while Alisha got to spend some time with Jess. As soon as her line was flushed she was up & ready to go.

The girls seeing each other for the 1st time in ages was lovely. Jess wanted a cuddle & kiss, & they held hands as we went for a walk to see if any bunnies were about in the field. Caitlin surprised us all by walking the distance she did. We went back in for dinner & it was obvious that the walk had taken its toll as Caitlin was exhausted.

She got dressed for bed & looked like she was going to nod off almost instantly as I was about to leave. It's a horrible feeling having to leave but Alisha got to open her Mothers Day presents with both her girls which was great.

XxX

Good Burger

Caitlin's temperature is still up & down despite changing antibiotics. She had another school lesson today which was pretty tiring, as she was asleep when I got there.

I brought with me some new toys, the post which had some Caitlin additions in it & her princess sticker book, as her Nanny Jane had sent some sticker packs through the post

She's still in really good spirits, its amazing considering what Caitlin is going through. We've all just had Burger King (I now don't have one of my kidneys as payment) which Caitlin has eaten a decent amount of. I'm beginning to think she'll turn into one at this rate!

Caitlin is having fluids through her nose tube & antibiotics at the mo. We received her "food" for the next month which consists of nutrient pouches which she'll have overnight. We're also now stocked up on supplies for her nose tube as we'll be maintaining it daily.

XxX

Heat

After Caitlin's temperature went up on Tuesday its been up & down since. She's been back on antibiotics & calpol to regulate her temperature.

She had her 1st school lesson today, Caitlin hasn't one for ages. The teacher came into the room for a one-to-one session with her giving Alisha a break for a bit.

You'll notice these last few posts haven't been very detailed. It's because I'm still in Ipswich, working & checking on Jess while Alisha is at Addenbrookes with Caitlin. It's fair to say the pressure on everyone is immense & the cracks are showing. It's all we can do to keep our heads above water without killing each other. We just have to stay strong for Caitlin.

I spoke to Alisha a little while ago, & the doctors are going to take her off the antibiotics. They think the infection is gone & possibly the antibiotics are driving her temperature up. We can only wait and see.

XxX

15 Minutes

Caitlin was due home today & after a bit of work in the morning, I wolfed lunch down & headed to Cambridge.

After chucking their suitcase in the car (its easier to load everything into that) & filling the car up with petrol I was off. I was at Cambridge when Alisha rang & asked where abouts I was. From that phone call to walking through Caitlin's room was 15 minutes & in that time her temperature had spiked again.

She wouldn't be going home today, everything had reset & we now have to wait 48 hours after her temp drops. She's back on antibiotics & fluids & we're back to playing the waiting game.

A football to the nuts, dropping a radiator on my finger, Chelsea losing to West Brom, nothing hurts as much as this.

I'll update later

X

The Switch

It's late on Sunday night & I'm back at home, Jessica is at grandma & grandad's, & Alisha & Caitlin are at Addenbrookes. Fingers crossed, touch wood, stroke a rabbits face, whatever superstition you choose, Caitlin should be coming home early next week. Hopefully in the next couple of days as her temp is stabilising to a satisfactory level. Alisha just has to have training on the feeding pump & they're all clear to go home.

I'll update more when I know more.

XxX

Day Watch

After quite a decent nights sleep for both of us, I find that time is rapidly disappearing. It's been ace spending time with Caitlin & I'm gutted its going to be over so quickly. The problem is I have to work as we never know what lies ahead of us.

Caitlin is still in good spirits, she hasn't touched her Coco Pops but she is drinking & that's at least something. Her temp is stabilizing so we just have to wait & see on that front. She took her medicines without fuss too which is great. We've played Snakes & Ladders, coloured in some more, dressed up & she's now doing a Tinkerbell puzzle (well I am as she keeps asking me where the parts go!)

I'll update later, hopefully to say her temp has stayed down.

XxX

Night Watch

Or the Secret Sleepover as we like to call it!

I'm at Addenbrookes tonight to stay over while Alisha gets some well earned rest & importantly, some time with Jessica who doesn't really know why her parents aren't around.

Caitlin is in good spirits, for a girl who has been in hospital since the end of January its amazing. So far we've coloured, watched Barbie, watched telly & generally had a really good time. It's so nice to hear her laugh & smile, given what she's been through.

The best thing though, is seeing her eat. It's been quite a while since I've seen Caitlin eat anything major & tonight she had a scrummy burger for dinner which she's had half of. This might not seem a lot but it's a feast to us!!! She is also drinking too, not a great deal but its a start.

She's had several different antibiotics, calpol to get her temperature down, & Septrin which she has at home. Caitlin's now asleep whilst having an overnight feed through her NG tube. This is something we'll do when she gets home as well. I'm expecting a rough night as she gets up a lot to go to the toilet so I'll leave it there & update later probably.

XxX

The Brave One

I'll try & update this as best I can given that I haven't been able to get up to Addenbrookes as I've had to work.

Caitlin is now on feeding tube (NG tube) number three, & this one looks line it's in for a while. 60 days to be precise. This is the only way Caitlin is going to get the nutrients that she's lacking by not eating. When Caitlin finally comes home, we'll have to have a feeding pump here where she can have overnight feeds. This is also another way we can administer chemo. The yukky one that Caitlin hates.

Whereas we don't touch the Hickman line, the NG tube will be used every day & unfortunately the NHS can't give us a nurse to live round our house 24/7. Alisha has had training today on daily operations with the NG tube as it'll be us who gives her the feeds & flushes of the tube & she's proven to be a very quick learner. After 60 days they'll replace the tube & we start the process again for another 60 days.

Caitlin's temperature is stabilizing which is a good sign. She's had antibiotics & ambizone again today & seems pretty bright & chirpy. On Saturday, Alisha is coming home & I get to stay up at Addenbrookes with her. She's calling it our Secret Sleepover, so if you could keep it to yourself I'd appreciate it!

XxX

Quarantine

Caitlin has the Norovirus, or Gastroenteritis (sickness & the poops, Bradford & Bingley) & is in a strict barrier room. Only two adults at a time & no children. Seems that bringing Jess up to see Caitlin wasn't such a good idea after all.

XxX

A Room With A View

Caitlin had platelets over the night & more fluids. With her not eating, they have to make sure that she has all the nutrients she can get & this is the easiest way to do it.

Caitlin has had chemo in the form of Peg (injection in the leg) & Vincristine (give through her Hickman. Sorry couldn't make that rhyme) today which is another good sign that Addenbrookes aren't too worried about the infection. She still has the rash but that isn't the primary concern. Caitlin's lack of eating & drinking prompted what came next... A feeding tube.

It's something we've been dreading, it doesn't seem fair that this little girl could be subjected to so much stress & torture but inevitably it was going to get worse. A feeding tube is a tube that goes in through her nose & down her throat to give her nutrients & protein. As she's Febrile Neutropenic (no immune system) she desperately needs any little bit of help she can get to build her up & fight the infection, as well as resume the chemo to fight the leukeamia. It's a traumatic experience & the first resulted in Caitlin ripping it out & made her cough up a bit of blood. Our worst fears realised.

It was here that Addenbrookes show their class & amazing high standard in dealing with poorly children. The nurse sat down with Caitlin & explained to her with baby Caitlin (a baby doll, who happened to have the same name!!!) & how the tube went into baby Caitlin & would make her better. After going through it with her they tried again, this time with no fuss, no stress. Amazing!!!

On a much brighter note, Caitlin had a visit from Nanny Jane today which she absolutely loved. She loves her Billy & Bella the dog & especially loves seeing Nanny Jane who really made her day.

Caitlin is having her "dinner" overnight as the feeding tube starts at 7. It's been a traumatic day for all involved & its at this point I'd like to mention my girlfriend.

Alisha has been in hospital(s) with Caitlin since Thursday. She's had to put up with sickness, illness, tantrums & sadness & she's still going strong. She's seen her daughter go through the worst experiences & stayed up through the night with her. Alisha has gone through the worst three months of her life & has remained strong, even though she says she is lagging. If people could leave her a message of support, I think she'd really appreciate it.

Tomorrow, my parents, Jessica & I are going to see them & bring them food, clothes & some well earned rest. I'll update again then.

XxX

Oh yeah, the title of the post. Caitlin is in a room that's next to the lovely outdoor play area. The only problem is she's barrier & can't leave the room. Nice to see irony hasn't left us.

X

Desperate Measures

Caitlin's rash has gotten worse, she's still not eating, & her temperature is still up & down. She was given fluids during the night due to not eating & drinking, another sign that they really don't want to give her a feeding tube.

There was talk of Caitlin going to Addenbrookes as Ipswich wanted Caitlin checked out even further, as they weren't sure what was causing the rash. She had traces of blood in her urine, & the antihistamine wasn't getting rid of the rash. It wasn't long after that Caitlin was sick, so what little stuff she had in her stomach, soon wasn't.

She was whisked away to Addenbrookes pretty quickly, once again with blue lights & sirens & that's where we are now. She's been asleep since I got here. The doctors have had a look at her, given her fluids & laid out their plans. A further investigation is required, which means x-rays & probably an ECG again. We may not find what's causing the infection, its all part of the process & they're not alarmed. If they were they would tell us.

We don't have a timescale & that's about all I can write at the moment.

XxX

Another 48 Hours

Caitlin had broke out in an angry red rash, her temperature had spiked again & that she would more than likely be kept in for... Another 48 Hours! (yup, I managed to get them both in!)

We're not sure where the rash has come from, whether its a reaction to the new blood or what but they wasted no time & have given her an antihistamine through her line.

That's as much as we know at the moment. Caitlin is now asleep & we're getting ready to head home & get more stuff together for the coming days. As soon as we know more I'll update.

XxX

48 Hours

I didn't update yesterday but I'll bring everyone up to speed as best I can.

Friday

Caitlin didn't have a blood transfusion as her blood count came back up a bit, she did have antibiotics though, as her temperature concerned the doctors. She didn't eat much, & slept a bit during the day. The doctors had already said that they were going to keep her in 48 hours after her high temperature to monitor her so we had to quickly change & arrange things accordingly.

I took Alisha home that evening as they both needed clothes desperately & then dropped her back up the hospital for part one of the overnight stay.

Saturday

I went to work (wished I hadn't but thats a whole different & boring plumbing story) while the girls stayed at the hospital. Caitlin still wasn't eating much, but was colouring & playing as much as she could. By the time I got to the hospital Caitlin was having a blood transfusion. After several observations the doctors decided that the count was too low & set up her line for the transfusion.

Caitlin had made a card & a bag for my cousin Lucy so I took it over & managed to see some of the family which was lovely. Feel a bit out of the loop (feel a bit out of it in general more like) so it was nice to see them all.

I managed to then see Jessica at my mum and dads which is always awesome. With work, hospital & home it's hard to balance everything & get to spend decent time with Jess as she hasn't got a clue what's going on, & is usually pissed off to see me as I'm not around to play with her!

It was at mum and dads where Alisha rang, which leads me to...

Some Like It Hot

It's 22.04 & Caitlin is fast asleep. Only problem is she's wired up to a machine giving her platelets.

She hasn't eaten much & hasn't been feeling well all day. Her temperature has been really high so taking no chances we find ourselves back at Ipswich hospital. Caitlin will have a blood transfusion in the morning as all her counts have been pretty low. The one good thing for Caitlin is she hasn't got to have her "yukky medicine" tonight.

Update again tomorrow when we have more news.

XxX