Hunger

It's been a while since I've updated last so it's time to go through what has been quite a hectic week.


Caitlin is now on Regimen C. After her MRD came back with the results we weren't after, Caitlin was moved from Regimen A to C. This meant a more intensive course of chemotherapy and includes more drugs which I will do my best to explain.


I'll start with the worst one of the bunch for Caitlin which is Mercaptopurine. This is one of the major chemo drugs we have to give Caitlin, and it's also the one that takes the longest. Not through the application of the drug, but that it stresses Caitlin out so much to take it we have to be patient and coax her into having it. It's an orally given drug, and also toxic to those not having chemo so we have to wear plastic gloves and dispose of everything associated with it into a special "Sharpe's" bucket that Addenbrooke's having given us. She has to be Nil By Mouth for 2 hours before having it as well so we have to make sure dinner is earlier and that she doesn't eat or drink for those two hours as it works best when the stomach is empty. This has been tricky as Caitlin falls asleep if it gets too late and then makes it so much harder to give as waking her up already stresses her out. There aren't any words to describe how emotionally stressful and how gut-wrenching doing this is. We've tried to explain to Caitlin that it will help her and that it's for the best, all you see is a four year old, scared and feeling punished. It's the one drug that's made me pour a whiskey straight after giving to Caitlin to calm me down. It's awful.


Septrin is a orally given drug that we give Caitlin only on weekends. It's a banana tasting yoghurt that Caitlin doesn't like as she doesn't like bananas! She now also has Cytrabine. This is a chemo drug that destroys cancer cells by interfering with DNA synthesis. She has this once four times a week, from Tuesday through to Friday and is given by the Community Nurses who come to our house and gives it to her through her Hickman Line. Again, this is a toxic drug that is vacumn packed and kept in the fridge. The Nurses coming to ours to do it is a blessing in disguise as I can work without having to worry about taking the girls to the hospital. Cyclophosphamide is given through Caitlin's Hickman Line. It attaches to DNA in cells and kills off cancerous cells. It is also a type of alkylating agent. This is a "long day chemo" drug as it takes a while to give it to her so it will be an early start and a later leaving time for us at Addenbrooke's. What I will do at some point is scan the flow chart we have, as it explains the timing of all of the drugs and the stages of Regimen C.


Caitlin has been sick a couple of times, both around the time of giving the Mercaptopurine. One was straight after giving it, and one was just after waking her up. I don't know whether it's the stress of taking the drug, or just the side effects from them all. She's also been given an assortment of drugs, for constipation, to help her go, for anti-sickness. Poor girl has so many drugs inside her, her body doesn't know what to do.


The other problem we have now, amazingly, is that Caitlin has lost her appetite. Whatever we put in front of her, she'll eat a little bit and then say she's full up. Even if she's specifically asked for a dinner, she won't eat a lot of it. It's almost like polar opposites of 4 weeks ago, and something we have to be a bit careful with. She's at 20kg at the moment, if Caitlin drops below 16kg she'll have to have a feeding tube inserted into her nose and be feed nutrients through this tube. I don't think its a very pleasant experience having it inserted so it's something I'm trying desperately to avoid. With all that Caitlin has been through, I'd like this to be the peak of unpleasantness, and not have to witness her go through that process as well. It may be wishful thinking, but I will do everything I can to make sure she eats (being proclaimed the "Best Cook Ever" by Jessica and Caitlin, I've got a job to do!).


That's it for me tonight I guess. We're at Addenbrooke's again tomorrow morning for Caitlin's Lumber Puncture. It should only be a short day there which is good, as I think it's safe to say we're all pretty drained.


xxx