Not much has changed for Zoe, which is exactly what we want. Her counts remain solid, her WBC is holding at 4.2 as of today, though she did have GCSF on Friday. In terms of a trend she seems to be slowly ticking upward, holding on to more and more cells each week.
Her second chimera test blood draw also took place today, so I’ll be on edge until we hear back. They don’t always draw a second chimera test at 60 days, but Michelle and I had already determined to press the doctors to do it anyway — we want to be sure her last test wasn’t a fluke. Which of course it wasn’t, objectively, but at this stage we are still quite prone to worrying that something we can’t see is wrong. Luckily kids who are on the study all get tested again at 60 days anyway for a data point, so it was all part of the plan.
At home we’ve settled in quite nicely. We’re increasingly finding time for work and fun activities during the day, though it tends to be odd hours broken up by Zoe’s med schedule. Zoe has worked her way up to almost 10 ounces per day of breast milk, meaning we may be able to get off the IV nutrition soon. That would take a good hour and a half off of our daily routine, time we’d be grateful to have back.
Maya is doing well, we have a number of activities we’ve worked out to get her out of the apartment and playing with other kids. Keeping up her social life is really important at this age, and we’re lucky to have a number of friends here and back a home a short drive away willing to meet up for play dates.
We did find out that Maya is not going to be able to return to school this year, it’s just too dangerous for Zoe at this point should something hitch a ride home with Maya and get us sick. Her school is a really good one, but it’s just not possible to ensure she won’t bring something home and the doctors said no to her return this year.
Once Zoe is a little further along, likely next spring, Maya can start up again. Thankfully the girls are both very young, she won’t miss as much as she would even a year or two from now.