Dylan has been fine all day apart from sulking over a broken scooter and throwing a tantrum on the way home that left him a little breathless as normal.
He has this little habit of holding under his armpits near his chest and when we ask him why his typical response is “nothing”. Occasionally (and I mean very occasionally) he will say his chest hurts but usually that is when pointing to his stomach because he needs a bowel movement, or his side because he has a stitch from running / walking too fast..
Tonight he started doing his holding under his armpits thing and saying “nothing” was wrong when I asked. I don’t know whether it’s just habitual, like a few other quirks he has, or whether it’s something to be concerned about. I will bring it up at his next clinic but there was a theory it could be his scars itching or feeling odd rather than his actual chest as that is where they are all located. Still it makes me worry.. is it a cyst bursting or a new nodule or cyst growing?!
He has eaten and drank really well tonight which he never would when he had a cyst pop so that’s reassuring in that way. And he has been playing fine, singing and shouting and not getting tired at all.
Come bedtime he was fine. Numbers were all good even though that has become a challenge in itself now. His PTSD prevents me from getting a fully accurate reading when he is awake as he gets very stressed about me checking him. Even though we use to do it multiple times a day as routine, gradually we’ve had to stop and are now just down to once a day (unless we are concerned), which is just before bedtime when he is lay down and hopefully relaxed. Then we can also see how the day has effected him and whether he is tired. He really overthinks his breathing and gets tearful and fidgety if we can’t get a good reading quickly. I’ve tried various calming methods but I think after everything he has been through it’s normal really. Because of this I always check on him a bit later in his sleep.
Sleep studies are how doctors get a good idea of a persons oxygen levels and heart rate during rest but also because during sleep the body isn’t able to ‘compensate’ the way it does in the daytime or be influenced by outside stimuli and you actually get a more accurate picture of how a person is coping. This is why we check him again, we can see how he is without him stressing out, breathing funny on purpose, fidgeting or talking away to himself as he likes to do!
Tonight I couldn’t get an accurate heart rate reading as he was too unsettled. His oxygen levels read at 98 so then I counted his HR out manually twice and it sat between 70-85 which is normal for Dylan now.
However, he felt a little sweaty but not feverish. This coupled with him being unsettled could be because his room is warm. He usually gets a bit like this after a bath if it was too warm but he didn’t have one this evening. Back when all this first started he use to suffer horrendous night sweats and the nurses always thought he had a fever because his bed and pjs would end up soaked. We were told this was down to his oxygen needs. As his lungs improved and when he started on overnight oxygen the problem went away. He has been fine ever since coming off the oxygen too so it does worry me that it is a sign of the disease reactivating.
I will keep checking on him and hopefully as his room cools down he will be fine. Or he is just sweating off the cold he has. There really isn’t enough “symptoms” for me to be concerned, I know that in my head but it doesn’t stop good old anxiety and PTSD coming out to play!! I was having a conversation the other night and explaining how Dylan will never be classed as being in remission. His cancer is never “gone” it’s just inactive. This I think shocks a lot of people as it’s a hard concept to understand but it goes someway to explaining how we feel daily even though life is going great right now. We are literally waiting to see what flips the switch in his body to turn this evil disease back ‘ON’ again...
This is our life now. But at least it is a life.
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