So where are we at? First of all, Ana is doing great. She started school in September with everyone else and has barely missed any days except for trips into the city for check ups. She had a follow-up MRI a couple of weeks ago (without sedation!) at Columbia. That came back all clear except they saw a lymph node near her liver which the radiologists ultimately decided was nothing (although Ana’s oncologist at Westchester – Dr. Hochberg – may want her to get a PET scan). Dr. Martinez (the hepatologist) and Dr. Hochberg haven’t managed to talk about this issue yet (as of last week), so hopefully this week we’ll know for sure if she needs a PET scan. Full disclosure: I have no idea what a PET scan is.
Ana had been getting labs drawn every three weeks up until about two weeks ago when her labs came back showing low white cells (called “leukopenia”). They think this was from some of her medications so they discontinued four meds and put her back on weekly lab draws – as of last week her white cells were coming back up, so they reintroduced one med (Cellcept – an antirejection medication) but she’s off the other ones for good now. So this month has been a huge medication milestone. She is on five medications, down from about twelve back in February. All meds are taken in the morning or evening (or both) and the meds that she had to take in the afternoon have all been eliminated which is a big relief (those afternoon meds were a big PAIN – and those were the ones she tended to forget).
We’re still not sure what to expect beyond this first post-transplant year. But…I guess that’s okay (it was really hard for me to admit that). Ana seems to be thriving. She caught a cold right after she started school and recovered just like she should – like healthy kids do. And she’s growing again – getting taller and morphing from a kid to a teenager. I’m going to end this post now, even though I feel a bit of misty-eyed gratitude trying to draw me into an extended metaphor about life, and thankfulness, and appreciating all of the moments we’re given.