I walked into Alex's room this morning to check on him since his white counts are literally zero, making sure he didn't have a fever and I realized I'm back where I started 6 years ago. Same room, similar disease, different boy.......but the same fight.
I stay up with him until he goes to sleep, just like I did with Ian.
I care for his needs, making sure he gets his medicine, constantly checking him for any signs of pain or illness.....just like I did with Ian.
Eric & I agonize over balancing keeping him healthy vs. letting him live as normal a life as possible.....just like we did with Ian.
I keep a walkie talkie by my bed so Alex can call me in the middle of the night if he needs me.....similar to Ian; with Ian we used cell phones but I tend to sleep through text notifications these days so we've gone 'old school' with Alex.
I've rearranged my life around medications, doctors appointments and tests.......just like I did with Ian.
One thing is different, I didn't ask for a projected prognosis this time. Ian had a 85-90% probability of being cured but he was the 15%. I know doctors want to give you hope but in my mind prognosis = 'my best guess' so why ask? So when folks ask what Alex's prognosis is I tell them the truth, the doctors didn't offer us one and we didn't ask......we only have two options and we've experienced them both.
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