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

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

Back to the Future: Part 3

Yesterday Caitlin had a routine blood sample taken to make sure her counts were fine for a trip to Addenbrooke's today.


Everything came back fine and we were good to go. Today was the last of Escalating Capizzi, which consisted of Vincristine and Cytarabines. We had to wait a little while as they have to be made up and being Monday, they have a backlog of two days to catch up on. Everything went absolutely fine and once again, everyone mentioned how well she's coping and doing through this tough block, she's put a bit of weight back on and her counts are good.


Which brings me to the next block, its called Delayed Intensification... I know, it sounds like a method to torture James Bond. However, this 2 month block, in theory, is Caitlin's last before Maintenance. This block features all our old favourite drugs, Dexamethasone, Mercaptopurine, Cytarabines, Vincristine, Cyclophosphamide, and Septrin. We also add in Doxorubicin in this block, which damages DNA and kills cancer cells. It is a type of anthracycline antitumour antibiotic, lovely bit of alliteration! This block is mainly at Addenbrooke's hospital, with Ipswich administering a few of the drugs. We hopefully start on the 25th of June, blood counts permitting. It's going to be fairly intense (d'uh!) but Caitlin has had these drugs before, and we're used to it all by now so we've just got to plough on and see August as the light we've been so desperately aiming towards. I'll add the flowchart on here once I scan it in, it may not make much sense to anyone but at least people can get an idea of what we get and go by.


The charity fundraising is going well with the organisation of the gig fundraiser going full steam ahead with amazing raffle prizes coming in, Cyclemania is coming along nicely, there's an awesome bike rally being planned and the best of all, my Dad and the team did the BT Three Peaks walk in awful conditions in 10 Hours and 45 Minutes. So far he's raised £1030 for Clic Sargent but it looks like a load more is being added to that so it's a brilliant achievement from everyone and a massive thank you to everyone who has donated!


We spoke to a couple today who's little girl was in the early stages of treatment, and it brought back so many memories of how we were at that point, scared, confused, angry but most of all unsure of what the future held. The little girl was so sweet but just so angry at everyone, and it just reminded me of what we went through and how we coped with the help of the charities and the hospitals and the people around us. I'm determined to raise as much money as I can this year.


XXX

Dumb and Dumber

It's not very often I go off on one, I'm a fairly placid person, but the stupidity of people confounds me.

If your child has chickenpox, then it's probably best you don't put them in close proximity of other children. It's also probably wise not putting them near a child who is obviously going through chemotherapy & whose treatment can be massively affected by chickenpox. Most of all though, it's probably best you don't teach your child to say "I don't have chickenpox" as they will say it out of nowhere, out of context of any conversation, & you will be found out. You will, more than likely, infuriate a mum & a dad who are trying desperately to keep their daughter safe & out of hospital, & on track with her chemo.

I get the feeling I'm going to be updating again soon. :-(
XxX

Anger Management

We've had a week of hospital visits so I'll update on what's happened so far:


Yesterday we were at Ipswich Hospital early as Alisha had a physio appointment, and as Caitlin was due to have a blood sample taken it made sense for us all to be there. Alisha soon went from physio to the Fracture Clinic as it was apparent that the damage to her leg was worse than they first thought. We disappeared to our usual section of the hospital (PAU) for bloods and a quick change of the Hickman Line ends, leaving Alisha waiting to be seen. The nurses let Caitlin play in the Play Room while Alisha was having her leg assessed but after a while we left (I'll get to this bit later on in the post) to pick Jessica up and Alisha soon followed us with a brand new cast! We got the phone call later from the Oncology team that everything was all clear and we were good to head to Addenbrooke's the next day.


Today we were up early and on the road, it was a procedure day and Caitlin had been Nil By Mouth since midnight. She was due a lumber puncture today with chemo, a new NG tube and a change of dressing for a Hickman Line. The human equivalent of a Car Service!!


The doctors observations came back fine, she's dealing with the chemo really well, surprising everyone as she's bubbly, happy and full of energy. Her weight had come down though, which has now prompted an increase in her overnight feeds again. This time, instead of one bag of nutrients, we have two with a double giving set overnight. This will hopefully bring her more in line with her weight and height ratio. I mentioned her aggressiveness to the doctors and we discussed speaking to a child psychologist. Maybe we'd just taken for granted that Caitlin was dealing with the chemo and the normality of hospitals. The psychological impact on her must be immense. The lumber puncture went absolutely fine but it was a different story when it came to leaving both Ipswich and Addenbrooke's hospitals. She flat out refused, throwing herself against anything in the way, kicking and punching as I struggled to get her jacket on. She screamed, tries to bite and cried trying to get her even out of the ward, and this is now where the problem lies. Whenever Caitlin doesn't get her own way, she'll kick off and turns into a completely different child. It's hard to deal with as we have to maintain discipline with her, yet knowing what she has been through we have to give her some leeway. There's a fine balance with it all, and hopefully we can speak to the psychologist soon to help us and most of all, Caitlin. We're back to Addenbrooke's again tomorrow for more chemo but usually it's a short day so hopefully they'll be no tantrums tomorrow!


It's just over a week till my Dad does the BT Three Peaks Walk for the 13th time, and this time they're proudly doing it for Clic Sargent. Clic Sargent are a charity that offer support to parents with children who have been diagnosed with Cancer and they really have helped us immensely. There's still time to donate as £750 would be an excellent target/donation to an amazing charity. Follow the link and it's easy to do!


http://charitygiving.co.uk/roystonsmith


I'll leave you all with a picture of Caitlin after waking up from her lumber puncture. Update again soon.

xxx

What Dreams May Come

Well, where the bloody hell do I start?!


Caitlin's Peg went well on Wednesday, apart from her screaming and crying before we'd even left the house. It's got to the point now where Caitlin knows what chemo is coming up and because that's the only injection she has to have, it's a massive no no in her books! As she was looking pale, the Oncology nurses decided to take another blood sample on Friday ahead of the weekend. A blood transfusion was looming and due, and we need to keep the counts topped up so she her body can help the chemo do what it's supposed to.


It was also Jessica's birthday on Wednesday so we managed to have chemo on both the girls birthdays in the end! On the Thursday, Alisha managed to dislocate her knee in the bathroom. A trip back up to the hospital for us, this time to A&E for Alisha. We were there a while and came out with a set of crutches and an appointment for the Fracture clinic on Friday. Thursday was also my Dad's birthday so we ended up in hospital for that one too.


Friday we went back to the Fracture clinic and we were there a little while, this time Alisha came out with crutches and a leg brace to keep her leg in one position while she's on crutches. That'll be on for at least four weeks with physiotherapy afterwards. After we finished in that part of the hospital, we walked to our usual section of it for Caitlin's blood samples. Everything went fine and we ventured home so the girls could rest up for their big night. Typically, we get a call later on, Caitin needs a blood transfusion, but luckily it's going to be Saturday morning so it doesn't clash with her treat!


Friday evening we had been invited to Colchester Zoo to take part in Dreamnight. Dreamnight is an opportunity for disabled children to walk round the zoo whilst its shut to the public, the Zoo workers are around the Zoo with small animals for the children to see and stroke and extra feeding times for the bigger animals. It was an amazing night for both girls, Caitlin who has been through so much in five months and for Jessica who had never been to the Zoo before. They got to stroke Ferrets, Tortoises, Rats, Donkeys, and fed the Giraffes and Elephants. They had a brilliant time and the Zoo really spoilt all the children rotten. It was also a very humbling experience as the majority of children were severely disabled, with tubes and wires over their bodies and pushchairs with monitors to make sure they're ok at all times. Yet, they were so happy to be there and to see the animals, it puts everything into perspective. Knowing what we've been through and thinking we've had it bad, and then seeing the children whose quality of life must be awful, for them and their parents. It just fuels me even more to raise money for these charities, as their continual hard work is astounding and offers children like Caitlin and the children we've met a chance at normality, in such dark times.


It's Saturday as I write this, we've had little to no sleep as Jessica had a rough night, Caitlin and Alisha are up the hospital for a blood transfusion, which will take 4 hours. Jessica is with me, currently asleep. We've got a double helping of Addenbrooke's at the end of the week with a lumber puncture on Thursday, and Vinc and Cytrabines on Friday. I'll leave you with our week in pictures.


Update again soon. xxx

The Next Three Days

It's been a busy weekend, we've had a little early family birthday party for Jessica, a false alarm for Caitlin having a blood transfusion, and a few days of hospital visits coming up too.


Caitlin's blood counts had been on the decline and it looked pretty likely a blood transfusion was on the cards. Literally at the eleventh hour her counts started climbing, at the moment Caitlin hasn't had to have one but we're still on red alert. We've got to the point in Caitlin's treatment where we can tell when something like this is due. There are subtle changes and warning signs of tiredness, bruising, and general lack of interest in most things. The Regimen and more specifically the chemo she's currently on has to be so precise with her blood counts, we're always on our guard, knowing that a transfusion could be needed at any time.


This week currently holds a blood sample at home on Monday, Chemo at Addenbrooke's on Tuesday, depending on her counts and Peg at Ipswich on Wednesday. It's a busy one again, but with a bonus at the end of it! On Friday we've been invited to Colchester Zoo for what's called a Dream Night by the lovely Hayley Potter who works at the zoo. It's a chance for children like Caitlin to visit the Zoo whilst it's closed to the public and see and feed the animals! It's an amazing treat for her and we can't thank Hayley and the staff at Colchester Zoo for giving Caitlin this amazing experience. We just have to hope that everything goes well this week and she's able to go.


My Dad raised his target for his 13th (I got it wrong last time!) Three Peaks walk that takes place really soon, but we would like to raise as much as possible so if you could take a minute to have a look at http://charitygiving.co.uk/roystonsmith and please donate something if you can. Thank you!


I will update during the week.


XxX




Oh yeah, one last thing...

CHELSEA WON THE CHAMPIONS LEAGUE!!!!!!!!!!!!!

The Help

This isn't a post about Caitlin! Well it is, she's doing really well. She's bubbly, her hair is growing back, her spirits are high & it resonates on us. She's fun & lovely to be around. Her temper is there still there, don't get me wrong, but that is a snapshot of the old Caitlin. Hopefully the chemo is doing what it should be doing & we're heading in the right direction.

What I am going to write about is what's going on behind the scenes. A long while ago I decided I wanted to give back to the charities that have given to us & helped us through the darkest of times, & the only way to do this is to do what we do best:

Rock!

A charity gig, raising as much money as we possibly can for Clic Sargent & for Addenbrookes with our good friends Angry Beaver & us, Kings of Leon Smith with a raffle in the middle. It's going well so far & I'll have more details on the gig & the other events going on at that time soon.

What I would like to draw to people's attention is my dads fifteenth Three Peaks walk, this year raising money for Clic Sargent. http://charitygiving.co.uk/roystonsmith will give you all the details of the walk & more importantly, on how to donate. If people could give a little, it'd be a great step forward in supporting them.

I'm aiming to raise as much money as I can for these charities, as they truly have helped us, & I think these 5 months would have been unbearable without their support.

XxX

Birthday Girl

Today is Caitlin's birthday!!! She's 5 today & as a special treat I took her to Addenbrookes for chemo!!

She was due her Vinc & her MTX today which doesn't take long usually, so we rang them early to check if it was ok to go & we were off. It didn't take long to get there, & Caitlin bound in there letting everyone know what today was!! She had hugs off all the nurses & was given a present of a fairy set from the Ward.

Her chemo didn't take long, everyone wanted us home as quickly as possible which was good. We were there an hour & a half in total & we were free to go home. Caitlin has had some lovely presents & we thank everyone for all the lovely messages we've had.

I'm now off to see what cake we've got!!!

Update again soon.

XxX

A Little Princess

Thursday we were due at Ipswich Hospital, for Caitlin's PEG. Apart from me feeling like absolute hell, it all went off without a hitch. After Caitlin has the injection we have to wait there for an hour after to make sure she doesn't have a reaction or suffer from any after effects from it.


Nothing much has changed really, Caitlin's nightmare's continue, usually starting at 11.30 and they do carry on sporadically through the nights after that. Her temper is back to usual, in that she's a typical stroppy 4 year old girl!!! I guess we can cut her a little slack on that, as long as she tidies up after herself after pulling all her toys out! Her appetite is still hit and miss, and that's quite hard to take as a parent. You want to see her eating, even if it is the occasional junk food meal or sweets. We have increased her feeds at night in accordance with her latest height and weight recordings, but we'd prefer not to have to depend on it as her main source of nutrients, especially as Daddy is the best cook ever!! (according to Caitlin)


Today we've had a small family birthday party as Caitlin and I will be at Addenbrooke's next Saturday for chemo. She's got to open loads of her presents and now has a lovely collection of My Little Pony's and a brand new scooter for when the weather is better. It's nice to see Caitlin, Jessica and her uncle Shea playing with toys and messing around, it always brings a smile to my face hearing her laugh. It's that giggle that never ends!!!


I'll see if I can get some pics off my dad and post them up, unless he does it first!


Update again soon.


xxx

Just Go With It

We started the new block of chemo on Monday with the community nurses coming to ours and taking blood samples. Those results came back fine and we were given the go ahead to travel to Addenbrooke's the next day.


Tuesday was procedure day for Caitlin meaning she would have to be nil-by-mouth, so Alisha stopped Caitlin's feed at midnight so that there would be no problems. An early start for me and Caitlin beckoned as the traffic in Cambridge builds up quite early and we didn't want to be late. She was given her routine check up and everything was fine, except for a slight weight loss. Today Caitlin was due to have chemo in her bone marrow and via a lumber puncture, and after a little painting and playing with the toys at PDU, she had her special sleep and anaesthetic and the docs carried out the procedures.


She came back with a cannula in her hand and a slightly worrying explanation from the nurse as the Hickman Line hadn't bled back. She said it probably wasn't anything to worry about it, as it may have been the position Caitlin was in. Sure enough, when they changed the Hickman ends it worked fine. PHEW! The dietician also spoke to me about increasing her overnight feeds as her weight needs to come back up, but it wasn't at a worrying level.


Once the cannula was out, we headed home knowing we would be back the next day. Sure enough, the alarm clock going off early confirmed that. We left early again, as it wasn't due to be a long day at Addenbrooke's. When we arrived Caitlin was more concerned with playing with the Play-Doh that the Play Team Specialists had made than the chemo so we worked around her for a change! She had her Vincristine quickly and was set up with a pump for her IT MTX, it was only a small 50ml bag and it wouldn't take long at all. Caitlin was beeping before she even got to make the next Play-Doh animal! A quick flush of the lines, a quick change for Caitlin out of her pyjamas and into some clothes and a quick exit! We were home before lunch!


Tomorrow we are at Ipswich Hospital around lunch time so Caitlin can have her Peg. I'll update then.


xxx

Nightmare on Elm Street

It's been a while since I updated, so it's about time I brought everyone up to speed on what has happened and what is about to happen.


Caitlin has had a "quiet" period chemo wise, but that hasn't stopped us from visiting the hospital on a few occasions. We've had a few false alarms with how Caitlin has been feeling but luckily no overnight visits. She hasn't had to have any more blood transfusions but Caitlin has had to have platelets a few times as she was bruising really easily and her count was really low. Her blood counts are really important for the next block of chemo which is what I will explain next:

The drugs are indicated down the left-hand side. BM is Bone Marrow, IT Methotrexate is the lumber puncture, Peg is the injection into her leg, VCR is Vincristine and Co-trimoxazole is Septrin which she has at weekends. These are all drugs and procedures that Caitlin has had before. The new part to it is the IT MTX which is the same drug that is given whilst she has her lumber puncture, only this time it's administered through her Hickman Line. As you can see this is the part that escalates, and this is also the part that requires her blood counts to be up. The day before Caitlin is due to have IT MTX, we have to go to Ipswich hospital for blood samples, and if necessary a transfusion to bump the counts up. If the counts are low, they won't administer the drug and it'll roll over till the next time. This procedure is every 10 days so if it rolls over a few times, well, you get the picture.


You'll also notice the colour coding of the two hospitals. This week alone we visit Ipswich hospital twice and Addenbrookes twice. It won't always be this way as you can see but it's certainly going to tough going for quite a while.


The post title? The one thing that has been hard to adjust to is Caitlin's nightmares, which have been virtually every night. She doesn't recognise us once they start and its so hard to calm her down, sometimes we don't, she just literally falls asleep. It leaves me emotionally wrecked watching her like it, its knowing you can't do anything about it. You want to take that pain and the fear of it all away from this little girl who doesn't deserve to be going through this, but all you can do is just watch.


Tomorrow, we start this all off with a trip to Ipswich hospital, and begin this new block of chemo.


I'll update it again soon.


xxx

Any Given Sunday

It's been a quiet period for us, no major chemo, a few trips to Ipswich hospital for platelets and a new NG tube as the plastic had broken, but that's it.


It's Sunday, the house is quiet, the girls are watching telly and playing and its lovely. It's a good time to reflect on what we've been through since Caitlin was diagnosed in January. This rollercoaster has been non-stop and it's been hard to catch our breath, the toll it's taken on us all has been unimaginable and hopefully this rest period will prove helpful. We're at week 13, Caitlin has Vincristine on Thursday at Ipswich Hospital and that's it this week. The week after she doesn't have any chemo which is a novelty to us all!


Week 15 however, is very different. Caitlin will start the next block of chemo in the Regimen, which is called Escalating Capizzi (if you want to look it up), and it's pretty intense. It increases the intensity of the Methotrexate given via her Hickman which is every 10 days. I will scan the flowchart some time in the next couple of days, which will explain it a lot better. The one thing I've found from looking at the Google results of Escalating Capizzi is that it's very effective against Acute Lymphoblastic Leukaemia, so I'm not going to moan about what we're going to have to go through.

*UPDATE*

Caitlin had to have a blood test earlier on, and from Caitlin's pale complexion it looked likely she would have to have a blood transfusion. Sure enough the results proved just that so at 4 we went to the hospital and Caitlin had new blood. This might be a recurring theme for the coming month as her blood counts being up are vital for the effectiveness of the chemo.

At this point I'd like to say a massive thank you to Nicola Gouldsmith of Halfpenny House Haberdashery for donating loads of material for the Hickman bags that my mum has been making for Caitlin and donating to Addenbrooke's. Also a massive thanks to Denise for sending the girls some lovely Easter treats, they really appreciated it.

xxx

The Road

The road in question is the A14, as it leads us to one place usually, Addenbrookes Hospital, which is where we are today.

After a quick routine check up (including a weight gain!), we're moved to the bays where Caitlin can have her Vincristine & her Peg Aspiranage. Vinc is given through her Hickman Line, Peg however, is an injection in the leg. The nurses have gotten to know Caitlin really well over the months we've been in & out of Addenbrookes & know that Caitlin doesn't like needles at all. They have to use ninja like techniques to disguise the fact a needle will be used & when it comes to giving the injection, as quick as humanly possible!! Caitlin said afterwards that she wasn't brave as she cried, but I replied truthfully saying she was the bravest little girl I know.

We've been given the next flow chart for week 15 onwards & its not great. Looks like we'll be seeing a lot more of the road soon.

XxX

The Last Temptation of Christ

Bit religious for Easter Monday but it'll do.

As soon as I say to people that everything is going ok we end back in hospital. Caitlin had a blood sample earlier & I mentioned that she was bruising easily. Sure enough, the results came back that she needed platelets & that generally her counts were low.

So here we are, Ipswich hospital, having platelets. I'll keep my mouth shut from now on, it's probably better that way.

XxX

Waking Life

I completely forgot to finish yesterdays post!!!! I will continue...

When Caitlin's operation was complete, they bleep the parents with a pager that they give you. It must have an industrial vibrate setting as I almost needed a change of boxers when it went off. I ran up to paediatric recovery where she was resting & slept for a while afterwards. Not an anesthetic sleep though, she was absolutely knackered!

I had a lovely chat with the nurse who was looking after her, who had been through a similar experience with her own family, & after a while Caitlin came to. She was sore, hungry & just wanted to go home.

Back on the ward, Caitlin ordered her favourite Addenbrookes meal: sausages & beans. She didn't have hardly any at all, but was drinking plenty. After a bit more chemo, getting rid of the cannulas, & getting Caitlin dressed we were ready to go home. We were to take some more drugs home with us to help with Caitlin's sickness due to the Cytrabines & to update the doses on some of the others according to her height & weight.

Today I took Caitlin up to Ipswich hospital in the late afternoon for chemo & to also change the dressing on the Hickman line. As the last one caused the high temperatures, everyone is being cautious with this one, making sure it works & is extra clean. Now the Hickman is in, Caitlin can have chemo through it again rather than cannulas which does ease things again.

It's the Easter weekend & Caitlin has lots of eggs already, we also have to visit both hospitals in the coming week for different things. I'll update the blog again then.

XxX

The Big Sleep

I'm sitting in bay 6 in PDU at Addenbrookes waiting for Caitlin to come back from her op. Today is Hickman line #2 & hopefully the day where it gets easier again for her. We've said that before so I'm trying not to jinx it.

After getting here early & a bit of confusion as to where we were meant to be, we settled in at PDU. Caitlin's cannula from yesterday failed early on & was taken out in favour of a finger prick to take a blood sample. The sample was rushed through analysis as an urgent requirement. The results came back shortly & her platelets were low, so before she could have her op she had to have a platelets transfusion, which meant putting in another cannula!

It wasn't long after having the transfusion that Caitlin went up for her op & that's where we are now: eating lunch, listening to Fleetwood Mac & waiting for the beeper to go off telling me she's ready to be collected! I hate this part, watching her go under & then having to leave her. Everything is out of my control & I just have to wait.

XxX

A Life Less Ordinary

Most kids Caitlin's age would be getting excited around this time about having the Easter holidays off school. Unfortunately Caitlin hasn't been to school since December so every day feels like a holiday!!! Well, not quite. The point I'm making is that since we discovered Caitlin has Leukeamia back in January (there's no way its only been 4 months, it feels like an eternity) her life has taken a path no normal child will experience. Normal seems a funny word these days, everyday things for us that we now take for granted like feeding tubes, or cytotoxic chemo, will never be discussed at a "normal" dinner table. It's become the norm for us to administer chemo, or set up overnight feeds, or look at blood counts & work out how Caitlin's doing. I do wonder sometimes if a part of her childhood is being robbed from her, but I have to remind myself that this isn't always going to be like this, & she'll be chasing boys in no time (& so will I... with a bat if they come near my little girl)

Which brings me to the present, I'm sitting in Ipswich Hospital with Caitlin asleep in a bed next to me having a blood transfusion. She had her chemo yesterday at home as well as a finger prick to take a blood sample. When the sample was analyzed, her haemoglobin levels were flagged up as really low. As she was having her Hickman line in on Wednesday they wouldn't be able to do the op with those levels so low. The danger aspect would be through the roof so they arranged for her to have a transfusion in preparation for the op.

Unfortunately, that night Caitlin was sick. She hadn't had anything major to eat so there wasn't much to come up, except her NG tube, which was going in through her nose & now hanging out of her mouth. We cut it out & prepared for the hospital, as without the NG tube, Caitlin wouldn't be eating anything at all. A phone call later & we were there. We'd prepared for an overnight stay but we were lucky, a check over, a new tube & some antibiotics to stop what looked like the really early stages of tonsilitus & we were home.

The next morning Nanny Jane had brought Caitlin's Aunty Skye down as she was staying with us for a while, after a quick play with the new sticker books that she loves doing we headed to the hospital & that brings me to now: watching a bag of blood slowly ease its way into Caitlin. It's a long process of about 4 hours so I'll leave it there for now.

Tomorrow is Addenbrookes, & I'll update again then.

XxX

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.

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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.

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