The weekend doctor just stopped by for rounds. He brought up that it's Day 16 out of the projected 32 days since diagnosis until discharge, so we are halfway there. I'm sure it was meant to be comforting, but my feeling was more "Man, only halfway??"
We've been here long enough now for the impact of it all to have sunk in. We have a much fuller picture of what the next few months will look like, including family/friend/work support, day care, and our home as Boston Children's-satellite-hospital-room. I've said it before and I'll say it again...given the circumstances, we are in a good place and we owe it to being surrounded with the very best of people in our lives. It's not going to be pleasant, but it could be worse.
There are a lot of experiences we didn't even think to expect, and I'm sure more are coming. I've started a "Things They Don't Tell You or You Don't Expect" entry that I don't know that I'll ever publish. Maybe it's best to find things out along the way instead of knowing what's coming and worrying about it ahead of time, especially when there isn't much you can do about them. I will say this though...for us anyway, the hardest part has been the effects that steroids have on an already stressful situation for Landon. Our mildly introverted little man is constantly being checked on by a steady stream of C.A.'s, nurses, doctors, social workers, liaisons, etc. Vitals have to be checked three times a night, waking him from sound sleep often. He undergoes anesthesia twice a week for spinal taps. Physical side effects have been minimal thus far, thankfully. As a result of all of it, sometimes he'd rather be alone than have the company of family and friends that come to see him. Who could blame him? The steroid, however, exacerbates this. Little things, little annoyances, become the biggest things and he just can't help it. We have accepted that this is part of it, this is typical, this is "classic behavior" for this cycle. But it can be tough to experience. It can be like he's a different kid. They tell us we will "get our boy back" when we get home, we just wouldn't mind him back now. You know, this smiley guy below. :-)