It's been a year

We celebrated a significant milestone a few weeks ago that I couldn’t bring myself to write about at first. Our younger son finished his treatment for leukemia one year ago. We were extremely lucky in a lot of ways in how smoothly his treatment went, so when he was done, he was done. Some people go back and forth between remission and needing more treatment, which has to be so much more painful. From the start of treatment to the end, we held our breath and pushed through, moving from phase to phase with only a few setbacks or delays.

It’s amazing how different it all feels in hind-sight. Our boy’s illness and the treatment and difficulties that accompanied it was the dominating feature in our lives for 3+ years, but now, as far as anyone can tell, he’s a normal 5-year-old, starting kindergarten like every other kid in his grade. He gets to choose who he tells about his cancer and why, and so do we. It used to be the first story on the tip of my tongue because we were limited in our activities and rarely met anyone new during the treatment process anyway. Now, little buddy will sometimes bring it up awkwardly out of nowhere, as 5-year-olds with still-developing social skills are wont to do, but he mostly doesn’t seem to feel the need to talk about it. I find myself sometimes glossing over the last 3 years just to avoid having to re-tell the story, not because these new folks are unworthy. I just don’t always know where the line is.

Some people feel guilty that they didn’t already know. Others launch into deep feelings of sympathy that are unnecessary since we’re past it. But what do I say? “It’s ok”? It’s not ok. It’s never been ok. I think I usually end up somewhere around, “Yeah, it was terrible, but he’s doing well now,” which sometimes allows conversation to move on, or sometimes ends it. I say this all with the understanding that everyone, every single person who learns our son had cancer after the fact, absolutely means well and just doesn’t know how to respond. I wish there was a handbook for how to speak to people to whom shitty things have happened. Usually for me, something along the lines of, “Oh, that really sucks. Glad that’s not happening anymore,” hits the mark.

But this is all to illustrate why I tend to avoid telling the story if I can.

I’ve told it here before, but maybe it would be good for me to tell it again, a year post-treatment.

When our boy was 2 and a half, he started to get lots of little viruses. It was winter, so we didn’t put together how pale his face appeared. Looking back at pictures, it’s so obvious now, but at the time, we didn’t know what we didn’t know. On St. Patrick’s Day, he was running through the kitchen in green socks, a detail seared into my memory, and he twisted his ankle. This hurt him much more than it should’ve, and at the time, we were kind of annoyed he wasn’t brushing it off and moving on with the morning. Three weeks of limping and viruses and doctor visits followed, and our doctor ordered a blood test that showed a hemoglobin level of 3.0. The normal range for kids is above 11.0. I don’t know the units. I just know that 3 was very low and needed to be addressed immediately.

We took him to the hospital ER nearest us, spent several hours there, of which I remember very little, and ended up getting transferred to a bigger, better children’s hospital in Chicago, where we met some of the best people I’ve ever known. Sweet boy asks if we can go back there for check-ups sometimes, just so we can see some of them again. We stayed in the hospital for 9 days during that first stay. It was the longest 9 days of my life, and I can’t look at my journal from that time yet. I tried once, and it was too raw.

Treatment started right away and was divided into segments and phases, controlled by flow-charts and blood tests. So so many blood tests. With the help of LMX cream, a lidocaine numbing cream, he barely notices blood draws anymore, which is the exact opposite of my reaction to needles of any kind, so in this and many other ways, my kid is much tougher than I am. He endured a lot: needles and nausea, swallowing pills coated in Hersey’s syrup - he’ll probably never eat it again, losing his hair, feeling terrible but not knowing how to explain it, learning bad habits that he’s now having to unlearn without completely understanding why.

He rang the bell, signifying the end of his treatment, and we had a party in our yard where we gave everyone little bells, which we still find all over our house and yard. I don’t mind it.

Cancer and treatment shaped him in deep ways that we probably can’t see the full way around yet, and it changed us all as well. I’m not yet at a point where I can say I’m thankful for the experience. I might never get there. Being thankful for cancer still seems horrible. But I can see, from this far removed, that it shaped us in ways I don’t hate, that aren’t completely negative. We’re closer to one another, surer of our priorities and friendships, and more aware of what we could’ve lost.

Pictures pop up of him with his steroid-puffy cheeks or his bald little head, smiling away as if he didn’t have a care, and my heart aches for that boy. But that boy is gone, and this new one with big-boy confidence and surety as he walks into his new classroom has replaced him, ready to face his future with all of his past selves coming along, providing depth beyond his years.

Happy One-Year Anniversary, buddy. Here’s to many, many more to come.