Round #3

Up a notch

Noah has been given the third of his five rounds of chemo drugs and, as of this afternoon, he is back at home.

He is nauseous. He is weary.

The medications used this time around were particularly powerful and nasty in different ways than those used in the two prior rounds. Because of the issues caused by this kind of chemo, Noah had to remain in hospital and on steady intravenous fluids which were infused with magnesium and potassium throughout the three days of treatment. This was in order to ward off potential nutrient deficiencies and, more importantly, to protect his bladder. He went into the ward full of pep and vim last Saturday and came home relieved but deflated today. Chemo kicked his ass.

The immediate concern right now is dehydration. Though he has no appetite and looks a little boney, what is most critical over the next day or two is not getting enough calories and nutrition but that he continue to get fluids. Fortunately, we do not have to worry about forcing him drink enough on his own. One of the blessings of the nasogastric tube is that Noah can be "fed" (or given medications) day or night without having to be concerned about whether or not he has a good appetite. Noah's ability to hold the fluids down, however, is a concern. If he can, then he will be able to stay at home. If not, we'll have to bring him back to McMaster so that he can once again receive fluids intravenously.

And since he is happier at home, we pray that he will be able to stay. If he cannot, however, we know that he will be in good hands at the hospital.

Changed plans

At the time of the last posting, I had written that Noah would be returning to the hospital for this this round of chemo on Saturday, the 13th. Obviously, this didn't happen. When he went in for his clinic visit in anticipation of his admission, his platelet numbers were not where doctors wanted them to be so his chemo was pushed back a few days. When we went back on Tuesday, the numbers were still not where they wanted them to be (67 instead of 75) and so we were once again given a later date. On Friday, they were all the way up to 165 and so, at last, things were good to go.

Of course, this uncertainty and extra waiting lends itself to feelings of anxiety and creates waves of feelings for both us and Noah's sisters. We brace ourselves for the big day, prepare for separation and changes, and then have everything continue as normal. Add in a few snow days and it can feel as if one is stuck in dentist's waiting room while they decide whether or not your root canal is going to happen in a couple of hours or on some other day.

There is both stress and relief when things are delayed. Relief that Noah can continue to gain strength and stress about the fact that the cancer might also be gaining strength. In the moment it feels nice to defer, but it is better to move ahead.

Living

But I don't want to give the impression that we sit around here wringing our hands fretting over Noah or that in any way Noah would ever let us prevent him from doing what it is he wants to do.

Even though Noah's blood levels were not all up to par last week, his mojo was running at an all time high. He was loving all of the snow piles that plows have worked up around here and he took full advantage of opportunities to slide down hills on the old GT Snow Racer, to push his old man down off of the mountains, to make snow angels with his sisters or to toboggan down the big hill behind the school with his mommy.

Late one afternoon, right before dinner and so the time of day when hungry children are at their wildest and most reckless, Noah took it upon himself to launch his three-year-old body into flight from the top of one of these snow piles. Misjudging the depth of the snow at the bottom of the pile, he found himself flying further than he had estimated and landed like a felled tree into a pile of sawdust. The cold, the wet, and the shock contributed to quite the spectacle and the excitement was enough to nearly dislodge his NG tube.

But Noah wants to fly. He wants to live his life. He wants to live.

As I write, Noah has emerged from a semi-comatose nap and is now squealing about trains. He is showing off his newly acquired counting skills; skills which he developed while he was in the hospital receiving chemotherapy.

Reaching for the moon

Walter Benjamin once compared the telling of history to a child who reaches for the moon. Though it is never going to be grasped, the child does not reach in vain, for the belief that one will be able to touch the lunar surface is all that truly matters.

Last Wednesday, the girls begged to be allowed to go outside to once again play in the deep snow after dinner. It was dark and we hesitated before saying yes because we knew Noah would want to go with them. After being explicit about when they should come back and get help from mom and dad (basically for anything) we let them go out to do their thing. And because they looked like they were having so much fun, I went and joined them.

We made train tracks and threw snow. We ran, tackled and slid.

I pointed out a beautiful half moon to Noah.

And when Noah wants to look at the moon, he gets down on his back, looks up, and fully absorbs the glorious spectacle, just as one should when God's beauty and magnificence are on full display.

His expressions were full of wonder. He reached for the moon.

And this is how Noah is living his life and how we are trying to live life alongside him. Fully absorbing the glorious spectacle, living into the future that no one can ever grasp but which we all fully believe in.

He wants to live. He is an incredible boy.