Love and Other Drugs

Caitlin managed to bang her head in her sleep last night, and has complained that it's been pretty sore and has a small dent where she banged it. Not wanting to take a risk we took her up to Ipswich hospital where she still is as I write this. They're happy with her, but are going to keep her in overnight for observation anyway.


It makes it a bit more fun come the morning though as we have to be at Addenbrooke's for 9.45 for an Echo cardiogram. It uses ultrasonic waves directed over the chest wall to give a graphic record of the heart's position, movement, and to check the internal valves of the heart. With all the drugs going through Caitlin's body they need to make sure everything is still working as it usually would so it's reassuring that she's having it tomorrow.


We then have her Tuesday review as normal straight after so it should be a very busy morning. We're coming up to week five which marks the start of Minimal Residual Disease. This is important and is basically where they look at the bone marrow and the other data that has been accumulated and can determine whether the treatment is on course or if they have to increase it.


We can start to decrease Caitlin's steroids next week, which is great. She will also start on a new drug which is Mercaptopurine, which inhibits purine nucleotide synthesis and metabolism. Yup, I have no idea what that means either but I'm guessing from the sounds of it, it will stop the bad cells from reproducing which can only be a good thing. At week 6 we'll be down to one visit to Addenbrooke's a week which is good.


It's late and I've got to be up early so I'll leave it there. Caitlin is pretty up and down so any nice messages for her is always appreciated.


xxx 

One Fine Day

It's an unusual Friday for us as Caitlin doesn't have to have any bone marrow or lumber punctures today, which is great for us as it means a lie in till 7.

Caitlin had her usual review, weight is now over 3 & a half stone (!), blood pressure was a bit high & Caitlin has now been given some medicine to make her go to the toilet. The doctors think she might be constipated & it'll help her little belly.

She was given a cannula, quickly followed by the VCR which is the main chemo of today. Usually, at this point Caitlin would have some antibiotics, but the blood tests came back looking really good so she didn't need any. We also asked to see how the bone marrow tests were coming out & they came back really good too! Her blood pressure calmed down, & even her temperature had dropped. A small victory in a large battle, but we'll take it.

The only problem is, people around us are still getting more & more bad news & it seems to be getting worse. I don't think I've known so much sorrow and suffering in one month, but its the way it seems to be. Our thoughts are with all our friends & family who are having a tough time, & I can only hope it gets better for you soon.

XxX

Supersize Me

We were back at Addenbrookes today for Caitlin's weekly review. One thing we were really concerned about was her breathing which sounds laboured, but they've checked her over & Caitlin was fine. It's the weight she's put on from the steroids & her little body is slowly catching up.

I'll be glad when we can start decreasing the dosage of the steroids. It's nice to see Caitlin eating & looking really healthy but at times she's eating because her body wants more, whether or not she actually wants it. She'll complain that her belly is sore from eating, but will still ask for a snack, satisfying the crave of the steroids. Unfortunately, I can only cook as fast as I can & most of the time it just isn't fast enough for Caitlin's stomach!

Everything else was routine today. Needles, blood, peg, antibiotics. Caitlin had a bit of a cry at the hospital but it didn't last long. I think the whole experience of it all is quite overwhelming at times for her & I don't blame her in the slightest for getting a bit upset. I don't think I'd have the resolve to go through with what Caitlin has to.

XxX

Barbershop

Today was a hard day, and one that I suppose is a milestone in Caitlin's recovery from Leukaemia. Today, Caitlin had her hair shaved off.


We noticed her hair coming out at the end of last week but as the weekend progressed there was more and more and it had started to irritate Caitlin. We asked her about it and asked if she wanted it shaved and she said yes. I think the prospect of not having her hair washed was too good an opportunity to pass up!


We went from this:

to this:

There isn't a parenting handbook that prepares you for seeing your little girl have her hair shaved off, and watching her at the hairdressers reminded me of when we first found out that Caitlin had Leukaemia. It brought back those familiar feelings of anger and sadness. I guess we've hardened up to all the needles, and drugs, and terminology but seeing her without hair brings it back to reality. All you have to do is smile, she's still gorgeous, and nothing will change that.


Tomorrow is review day at Addenbrooke's, but she'll also have her Peg injection again. We're in the middle of week 3 at the moment so hopefully we'll know more about how everything is progressing.


It might start getting rough from now on in, as Caitlin hasn't been ill yet. Hopefully I'll be better prepared for it than I was today.


xxx

There Will Be Blood

An early start for us all today as we had to be at Addenbrookes by 8.30. We managed it, just, thanks to Cambridge traffic. It's been procedure day today, which has meant Caitlin has had to be nil by mouth (didn't put that as the title, far too obvious. The one there is really, really clever!!) since last night. Again, having a starving hungry 4 year old isn't the easiest of things but we got through it.

They tested her bone marrow again today, along with antibiotics afterwards followed by the VCR for dessert. She's a tough little girl & has dealt with it well, until she nicked my packet of Smokey Bacon crisps, then she crossed a line!

We've been given the date of 10th of February for her Hickman Line. This is a tube that goes directly into one of her hearts valves so they can draw blood or administer drugs when they like rather than have to put a cannula into her already sore hands. This is great news but also one that does come with surgery for Caitlin to fit it, but I'll leave the ins & outs for another day.

One thing we have noticed is that Caitlin's hair is coming out. I'm trying not to draw attention to it too much as quite honestly, I don't want Caitlin to panic unnecessary. She knows it's going to happen but if we can play it down as much as we can it'll help calm her as & when it does. The last thing I want is Caitlin to stress, that's the parents job!

Her blood samples have revealed Caitlin has next to no neutrophils, which means she has an extremely low immune system so we have to be extra vigilant against illnesses. The slightest infection & Caitlin's chemo changes quite a bit.

That's all for tonight, I'm now going to kick Caitlin out of my bed & into hers.

XxX

Sucker Punch

Yesterday, Alisha's nanny Val lost her fight with leukaemia.

It had been a long on/off battle, with Val enduring years of chemo & after so much pain she decided she'd had enough of treatment & just wanted to go home. They respected her wishes, gave her morphine to ease the pain & let her go home.

I'd met Val a handful of times & thought she was a lovely, caring & brutally honest woman in which I held a lot of respect for. My love & best wishes go out to her family who will miss her dearly.

The news yesterday was inevitable, & a small relief that Val was no longer in pain. I guess it just gave us a stark reminder at what we're up against & the devastation to families that it can cause.

Sweet dreams Nanny Val. We miss you.

XxX

Deja Vu

Caitlin had a nose bleed earlier for 45 minutes. The kind that started this journey for us all, & the place it led us to that day, Ipswich Hospital.

The blood test was swift, a prick to the finger & draw some out into a vial. After 10 minutes the results came back & revealed that her platelets were absolutely fine, but her haemoglobin was the lowest it could be, meaning Caitlin was Neutropenic. Risk of infection is at its highest & with that they've decided to give her platelets & a blood transfusion.

We're currently halfway through (3 hours for the transfusion), we've watched Anastasia & we're now watching Happy Feet! Caitlin is pretty tired & generally worn out. It's understandable but she's being a trooper. All she wants to do is go home.

XxX