An update on Wes
It’s been a while – things have been largely quiet, and we’ve been settling in to new routines as I settle in to my leave from work. More about that someday.
Wesley is currently in the second half of consolidation. It took us a little while to get here with several delays due to his reactions to Peg, weeklong hospitalization for fever, and other minor hurdles, but he’s doing surprisingly great.
His weight and eating had been a worry for all of us. For what felt like a year, but was probably little more than a week, he had barely been eating and you could see it – he had clearly lost weight and energy, and he got not pleasure at all from eating anything. Something turned it around – a shift in treatment most likely – and he’s been eating well, expanding out of his rice/pasta baseline into other foods again, including sweets. He loves shitty Hershey’s chocolate so I funnel a Kiss or a Peanut Butter Cup to him as an implicit reward, as long as he’s eating other foods. I make a huge pot of rice every few days and it shocks me how much of it he’s putting away, especially as he’s also eating other things again – apples and strawberries, pancakes, hot dogs, burgers, and more. A visit with a nutritionist a few weeks ago reassured us that he’s doing well, that his diet is actually good for a kid in his condition, and we should keep doing whatever we’re doing.
His energy levels have been great – he’s bubbly and full of life most days, so we’ve ventured out shopping, to the Children’s Museum, to weekend dates at Stockton Market, and he’s been incredibly happy to see his cousin Artie and able to keep up with an energetic six year old during hours-long play sessions. There’s nothing more joyous and heartwarming to see than your sick kid truly enjoying himself.
Treatment lately has been at home, with two medications – one oral, one intramuscular – that tend to bring him down a few notches, leaving him more tired, more achey, and less hungry than he would be otherwise. With his vigorous baseline health and positive attitude it’s hard to see his meds take the wind out of his sails, leaving him more tired, more achey, less restful, and less hungry than he would be, but he’s still a pleasure to be around and to care for. The really down moments – like puking all over the car repeatedly, on a really cold day, as we tried to make it home from Frenchtown without another frozen roadside cleaning – are few.
Our lives are full of downtime right now, with just enough deviations that it’s difficult to plan for much. Everything will only get harder in the coming months, though, as we start to see more intense chemotherapy, more stays in the hospital, and the arrival of a new baby in March, so we’re just enjoying the relative calm before the coming storm.
