This week was chemo week and thanks to the addition of Hydrocortisone before each dose we managed to avoid the usual high temperatures and Tachycardia associated with Cytarabine Syndrome which was fantastic! Wednesday evening he suffered a few low grade spikes but they soon went after a few minutes and we had a fairly smooth night. I still slept in my clothes as I usually do on chemo week 'just in case'.
I kept him off nursery on Thursday morning just to be 100% sure he was over the 'bad patch' where we usually have issues. The issues usually start at 6 hours after the 2nd dose and continue for 12 hours afterwards so by 10am I knew he was fine and wished I had sent him in as he was bored!
We now only have 4 rounds of Chemotherapy left this year.. unfortunately the last one starts on my 30th birthday but needs must. We still don't have an end date as the goalposts keep moving. LCH is so unpredictable so the plan is to do another CT scan in March sometime, this will be after 12 months worth of Cytarabine, and then decide from there. He may then come off this protocol and change onto another or he may continue on it for another 6 months before changing, we just don't know yet.
It's hard to think about the future and the end of treatment when we don't know when that may be.. we have no way to know how many rounds to go, how much improvement to expect next time or when he might get his central line removed. We have to focus on taking every day at a time and seeing every day for the blessing it is and not focus on the negatives surrounding the treatment.
I haven't been back to Little Nippers playgroup since Dylan started nursery.. I am wary of being too far away from the school at the moment in case they needed me in a hurry. I'm also feeling a little like I am starting all over again and I am hesitant to make new friends because of all the baggage I come with! I'm sure I will feel more like myself again soon and be out and about more but for now I am just focusing on my family and self healing my emotional wounds.
Dylan amazes me every single day, he is enjoying nursery and being a big brother. He is back to being fully toilet trained and is eating much better. Even his behaviour is improving now the Prednisone steroid has stopped. Some days we are even down to just four medicines a day! He is loving the freedom of no oxygen at night and frequently fidgets around the bed in his sleep. The only downside is he now gets himself up super early, rather then having to wait for me to get him, and often sneaks into our bedroom!
Staying hopeful for more 'normality' amongst the chaos and more smooth chemo weeks.. <3
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