Maintenance is and isn’t
We haven’t written much about Wesley’s treatment lately for a bunch of reasons, but he’s certainly not done, or even near done – there are twice as many months ahead as behind us, and he’s still very much a patient.
Today is a grueling day for him – he’s on fluids only since last night, and will have to cut even those soon until the afternoon to be safe for sedation, so he’ll be extra cranky. He’s got physical therapy and occupational therapy in the morning to help work on some of the damage – physical and emotional – from these many months of harsh chemotherapy and traumas. Later today he’ll get sedation – a strong cocktail of drugs that’ll knock him out so he can be safely immobile for the lumbar puncture (“spinal tap”) that will deliver a dose of chemo right into his central nervous system to try to ensure no leukemia cells can blossom there. At the same time he’ll be on an IV of another chemo that is both absolutely necessary and extraordinarily rough, being responsible for some of the hardest and most lasting of side effects. It has a somewhat cumulative effect both on the cancer and on the side effects, so each dose will leave him a little less likely to relapse, but also struggling a bit more with walking, with digestion, speech, and much more.
This is a monthly routine for Wes until February of 2021 at least, but that’s not all. Every day he takes an oral chemo at home, which also acts to suppress his immune system, and twice a day two days a week he takes a strong antibiotic cocktail to try to keep infections at bay. Following spinal day he gets a week-long “pulse” of steroids, which does all kinds of good things for the treatment, but also does what steroids do: turns him into a moody, bipolar wreck. Steroid weeks are not fun.
Meanwhile, the specter of relapse, infection, and unplanned visits to the ER lurks behind every door. As a family we need to be within an hour or so of a good hospital at all times, so we can travel a bit but not freely, and none of us are too keen to get on an airplane, or stay in a gross hotel, for risk of picking up some kind of virus he can’t handle. In these dog days of summer Wes can’t go in our beautiful river or creeks, in the local lakes, or even swimming pools, and playing outside in this crazy heat has to be very limited.
The routine we’re in is significantly more consistent than the previous 9 months, with a single clinic trip a week, and no planned inpatient stays for the future, so it is easier, but it’s by no means easy. Wes is getting older, much more aware than at the start, so there’s no hiding anything from him. He tolerates his medications at home at least half the time now, which is a big help, but it still means a battle almost once a day. It’s heartbreaking when we step back and think of what he’s still going through – pain, isolation, and the rest – but we are doing our best to keep him happy, comfortable, trusting and, to be honest, erring on the side of spoiling the shit out of him. I’ll happily deal with breaking his addiction to $1 MatchBox cars from the local grocery store someday if it means boosting his spirits even a little right now.
