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