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