Too much excitement just might kill me!
We had Monkey’s monthly checkup at the hospital this week.
Our appointment was for 8:45, but traffic was so awful that it took us 75 minutes to get there (without traffic its a little over 20) (that’s a long time for a little boy to sit still!) and we didn’t arrive until 9:20. It didn’t matter anyway, since we didn’t actually get to see a doctor until 11:45 (Monkey usually has a nap at 11!) (Anyone for some more parentheses?).
Monkey was an absolute star. He only complained a couple of times in the car, but never descended to full blown screaming, and he was a little ray of sunshine in the waiting room, bossing the volunteers around, watching the fishes and making friends with his cheeky grin.
My biggest fear was that he would fall asleep on the car ride home and then not nap and be a grouch for the rest of the day, but even that didn’t happen. He stayed awake the whole way home, took a nap when we got there (albeit 2 hours late) and even went to bed at his usual time that night. We also didn’t get a parking fine, despite my very expensive ticket having run out at 11:45, just as we finally went in to see the doctor!
At one point Monkey decided he wanted to leave, and headed for the doors. When I explained to him that we couldn’t go until after we’d seen a doctor, he turned around and trotted down to the doctors offices to find them. So cute – if only it worked like that!
When we eventually saw the doctor, he took one look at Monkey and said “Well, there’s nothing wrong with him, is there?”
And there’s not. At least not to see. But then, there never was. Even when he was having chemo, if you’d seen him before his hair fell out and without his NG tube, you wouldn’t have known there was anything wrong.
In any case, I asked the doctor what they’re actually checking for in these monthly visits. Because quite frankly, they are a big hassle and seem to be just a big waste of time.
In about 70% of kids with neuroblastoma, there’s something they can test for in their urine, and that can often give them an earlier indication of relapse than a scan. However, Monkey never had that marker (I kinda wish he did!), so there is no point in us doing the urine test. There’s nothing that needs monthly testing in his bloods, now that his levels are normal and he’s not having any treatment, and even immediately before he was diagnosed, there were no symptoms that could be spotted.
And the doctor agreed!
He said we can now go to three-monthly checkups, after each of Monkey’s scans. Unless we’re concerned about him of course, in which case we just ring and they will see him. He had me sign the consents for the next MRI so that they can make an appointment for us, and we don’t have to go back until after that (in about 2 months time). Hooray!
I always dread our trips to the hospital. I hate waiting around for so long at the best of times, but being back there, in the ward, being in that room with kids who are still having treatment, seeing people we met who are still suffering while we’re on the home stretch, it’s depressing.
I very rarely let myself think too much about what has happened, what could have happened, what might happen. Perhaps I should – maybe some part of me needs to let go, to grieve. I don’t know. But I worry if I go to that place I will have a hard time coming back, that if I let myself cry I will drown in my tears. And so it sits there, this little dark cave in the back of my mind. I often feel like it shouldn’t even be there, like I’m not entitled to hurt over what happened, when I know so many other mothers are having to go through much worse than I did. I glance at that darkness occasionally (being at the hospital is like a neon sign pointing the way, so I won’t be sorry to go less often) but I never let myself go in. And why should I, when there is so much to love and be grateful for out here in the sunshine?