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