We are not far from being a year into this diagnosis, and sometimes that feels like a lifetime and sometimes it feels like yesterday. We are always trying to navigate what’s our new normal and what should we be worried about. An example of that is fevers.
Claire seems to be having fevers twice a month, usually 24 hours after infusions and sometimes for no reason. We were always rushing her to the hospital, worried that something serious was going on, and usually sent home 8 hours later, more exhausted then we went, with no specific reason.
We are learning that her body might not know how to regulate temperature, that every time it spikes what she needs is extra rest and some cuddles, to feel safe and loved. Of course, there is always the worry in the back of our minds, is something else going on, are we not catching it in time.
So many decisions, especially when you have a child with a terminal illness, the heaviness of that is hard. You question everything and try to have hope that you are doing the right thing.
Today is one of those days, its been about 10 weeks since she has been sick, and in the hospital. I hope that this fever isn’t a reason we end up back there. For now, we let her rest and watch Peppa. Fingers crossed it passes.