Grappling with life after treatment

This is a hard post to write, but it’s important to me to face our reality head on.

After Long Term Maintenance wraps up – hopefully in spring of 2022 – Wes will hit End of Treatment (EOT), which is probably the easiest phase to understand. He’s done being poked and poisoned, although he’s never quite done.

He’ll spend many years – maybe the rest of his life – in semi-regular contact with the oncology world. They’ll want to periodically review his health through checkups and interviews; he may even get flown back to Philadelphia now and then from wherever he might be living. There may be procedures, tests, and studies he has to participate in.

In January, 2029 we can consider him cured if he’s gone the ten years since remission without a single relapse. This is really just a statistical observation that if he hasn’t relapsed by then his chances of leukemia reappearing going forward are not all that different from the chances of getting leukemia to begin with. It’s not “cure” the way we typically use the word. Until that point, well into his tween years, we’ll still be living under the dark cloud of possibility.

Less certain but highly variable are the possible long-term effects of his treatment that may themselves require treatment, or may just impact his life in a variety of ways. Puberty could be delayed, and it’s possible that his reproductive abilities could be damaged. He could be left with heart, lung, thyroid, and immune system challenges. Osteoporosis, fatigue, and vision problems are not uncommon, as well as many possible neurological effects including reduced memory and concentration. And of course, there’s a broad range of emotional, social, and psychological effects that will arise in ways unique to him.

We have no choice but to keep walking the very fine line between optimism and realism… it’s essential we keep our hopes alive – that he’ll make a full recovery with no lasting damage – without flirting with denial or delusion that could prevent us from dealing with what must be.