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