Normalcy
We returned home bright and early yesterday morning and things have been remarkably normal. So normal in fact, that I find myself wondering if it was really chemo that came in those double-wrapped “Danger” packages that have to be checked by two nurses against Austin’s hospital name band (which he’s never ever wearing and, if we’re lucky, can be found hanging from his IV pole) to make extra sure they’re giving it to the right kid. This boy has lost not one hair off his head and only the tiniest amount of energy from his body. Not that I’m complaining — if he wants to be asymptomatic, I’m all for it!
We do expect his blood counts to plummet this week (7-10 days post-chemo) which ought to make him irritable and tired and at risk for infection (and therefore sequestered from his usual activities). He’ll have labs drawn tomorrow when we go for radiation (I have two alarms set!) so we’ll use those as a guide for what we’re able to do this week. I’m really eager for him to return to school, albeit on a limited basis, just to maintain some sense of normalcy in his life (and mine). But we’ll just have to play this by ear.
One good piece of news: He’s supposed to get an injection of a drug that stimulates the growth of white blood cells each day for a week after chemo. This is a shot that I’m supposed to give him at home, usually in his thigh (his only slightly chubby part) once a day. He got his first one last night administered by a nurse in the hospital in case he had a rare but serious allergic reaction to it, and then we were planning to start today. You know, I know a few things about injections having had diabetes for almost twenty-four years now. But still, the idea of doing that to my child was not something I was looking forward to. Well, upon the suggestion of a friend, I asked the attending doctor yesterday (who happened to be the chief of oncology) if we might be able to delay the second shot from tonight until tomorrow morning when Austin’ll be sedated for radiation and do it then. He thought this was a brilliant idea! So I’ll bring all the gear with me and inject him while he’s totally out, oblivious to everything. It’s only going to get us through this first week and then I’ll obviously have to figure out how to do it on a squirming screaming child for the rest of chemo, but at least I should feel like a pro by then. Such a relief.
Speaking of relief, this whole past week has been a relief. Such a huge weight off our shoulders to know we can do it; to have made it through with such flying colors. I know it will get worse; in fact the next round includes a new drug that I’ve heard is a little rougher in terms of nausea and vomiting, but at least this first week is behind us. This lets us stand tall and move forward with confidence instead of cowering in fear and dread.
You’d think I wouldn’t need reminding by now, but Little A sure is tough to keep down.
I know this probably sounds awful but can you give him the shots at night while he’s asleep? I know, I know, there are probably people looking at me in horror, but I’ve had to do some things to my kids while they’re asleep because the flailing drama that happens when they’re awake was more than the procedure was worth.
Good luck and everyone here in Boston is thrilled that you’ve got one week down!
Isn’t “normalcy” so nice! I used to give Abby her shots in the morning trying to make it no more than a two second procedure (I’d prepare the syringe and alcohol wipe out of her sight, to cut down on the anticipation), but she’d still manage to wear the longest, tightest pants downstairs in the morning for breakfast, in anticipation of the shot (you know, kid’s magical thinking – if I have my pants on, Mommy can’t get to my leg to give me the shot). A lot of times she’d then take the syringe and needle after we were done and give all her stuffed animals shots as well (under my supervision) and this actually seemed to help her somehow, make her feel more in control. Later when I asked her about it, she said the shot didn’t really hurt that much, it was just the thinking about it beforehand. But you know from your own experience what it feels like, there’s certainly a little pinch with it – I just tried to make it as fast as possible. By the way, they can also infuse neupogen by IV – so on days he’s going in to the clinic and has his access in, they could always do that – though they will hesitate – some will tell you that it doesn’t work as well if given IV (I’m not sure that’s actually true), and they have to know beforehand so they can order it – but it can be done. So, you’re on your way with this – savor the normalcy of it all – there will be ups and downs – so just keep those marbles moving! Barbara
also, they certainly can prescribe topical lidocaine that you can have at the house to numb up the site.
Yes Heather, we do have this and use it for peripheral IVs and the like (when we know he’s getting them, at least!) but I’ve been told with the Nuepogen shots, it just increases the child’s anxiety so they’re on edge the entire hour the cream is working. I do have a friend who’s a nurse who offered to come over and give him his shots so that might be my answer!!