Today she only had two of these as this was from the other day, but you get the idea. She has her steroids and then usually a syringe to enable her body to cope with the steroids and not complicate things further.
We've been overwhelmed with information, so hopefully I can try and make it more simple. Sometimes I'm going to get times and things wrong as it's confusing trying to make sense of everything, but I'll try my hardest to get it right first time.
We've saw the physio's early on who has given Caitlin a booklet of exercises to do. The steroids are going to give her mood swings and make her tired so that she doesn't want to do anything, but we have to push her and get her active. Sitting around will only make things worse later on so if we start early on, we'll have a better chance at a later date.
Caitlin had a visit from Nanny Jane and Billy today and she was ecstatic. She's always happy to see family and it made her day, playing games and showing her latest drawings. It's always great when Caitlin is laughing and smiling as the steroids give people what's affectionately called "Demo-grumps", and Caitlin is no exception. She does get tired and withdrawn quickly and it's something we're going to have to cope with. As a parent you want your child happy and smiling all the time, but the reality of the treatment just doesn't allow it. It's going to be hard initially to adjust to this, but we have to stay focused, positive and remember that we're working towards the goal of completely getting rid of the Leukemia.
Which leads me to Caitlin's next part of the chemo. Its called Peg Asparaginase. Asparaginase is an enzyme that breaks down the amino acid asparaginase and will block the growth of any tumour cells that need the enzyme to grow. Unfortunately, its an injection! For a four year old who absolutely hates needles, Caitlin is doing incredibly. Its amazing to see this kind of fighting spirit in such a young girl and it makes you proud to be facing it all head-on along side her, knowing that she is probably a hell of a lot stronger than we are!
Caitlin has also had another cannula put into her hand for more antibiotics and to take blood samples, yet again another needle but she braved it with typical Caitlin flair. We also met the dietitian today, who gave us some useful information about what Caitlin can and can't eat. I think it was pretty clear that we need to change the way we do things and organisation is key to it all. The other person we saw again today was the consultant to go through yet more information about Caitlin's treatment and future plans.
It's a lot to take in so I'll probably end there for tonight, it's 00.08 on the clock and I need sleep. The last thing I will say is that the support and good luck messages from everyone have truly been incredible and it's really helped Alisha and myself deal with it all. We cannot thank you all enough.
xxx
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