Things continue to go well.  Austin has been increasingly cranky as the days go by but it’s hard to tell if that’s because he feels lousy or because he’s just plain sick of being there. He has made several new friends, all “big boys” with whom he races remote control cars or goes bowling on the Wii, so they make the time pass more quickly.

He needed a blood transfusion today because his hemoglobin was so low and you could see him visibly perk up after that (and get his color back). The real reason we’re in-pateint for this round is because he needs to be super-hydrated to help flush out the chemo. And that isn’t even just because of his kidney; anyone getting these particular drugs needs extra hydration. He’s finished with fluids tonight around 2:30 at which point we’re free to go (although we will wisely wait until morning).

So, we almost have this first week of treatment behind us and, all in all, it hasn’t been that bad. The worst parts have been that, thanks to all that hydration, he leaks through his diaper every two hours, making for less-than-restful nights. And we’ve managed to pull out the IV line to his mediport twice.  This is one of the differences from the Broviac that makes it both better and worse. With a mediport, the button is entirely under the skin with no dangling piece unless it’s accessed. But accessing it only happens with a needle poke through the skin. They accessed him when we arrived Monday morning and then the plan was to just leave him accessed all week, since he’d be constantly using the IV anyway. Well, last night he was jumping on his bed, wearing nothing, nothing, but a t-shirt with a chocolate chip cookie in hand (classic Austin) when he landed on his line and ripped it right out.

Happy New Year to us, we had to bring him to the treatment room for a major poke (and some major screams). Then this afternoon, he was sitting peacefully in my lap playing with blocks when I went to stand up and the line was caught on the leg of the chair . . . and out it came. Again! Less than twenty-four hours later. Ugh, like I said it’s always the little things.

He’s now happily playing with his Gram and Gramp while Mark and I have dinner at home (I’m currently waiting for halftime!) and then I’ll head back down for our last night there.

I’d been trying to come up with a good way for the kids to be able to count down the days until  this journey is over. At first, I thought I’d just make them a big calendar with the in-patient days colored red and they could “x” out each day as it passed. But I know that we’ll end up off our schedule, due either to low blood counts that postpone chemo or to the fact that we don’t know yet whether he’ll go through one or two twelve-week cycles of maintenance therapy, so I feared that a calendar would be disappointing and frustrating rather than helpful. I’ve finally settled on filling a jar with marbles, large ones for in-patient days and regular size for other days and letting them move one marble to another jar at the end of each day. This will give them a concrete way to visualize how much farther we have and how far we’ve come. Plus, if necessary, I can sneak a few extra marbles in (or maybe take a few out) depending on how our situation changes without them even noticing.

And we will carry on, one day at a time, one marble at a time, inching ever closer to the end, which could also be seen as The Beginning.

But where does one go to get all those marbles?

Advertisements