It’s been a minute – or a few years – but I wanted to give a really quick update on Aida as we’ve recently begun the first change in her treatment in, well, years. Thanks for the ongoing interest and prayers.

The short version is that Aida’s lesions continue to be stable, and we are very slowly weaning her from the medication she has taken twice a day since she was a few months old. There’s no way to know what might have happened without it, but this medication probably saved her life. All of that to say, we don’t know what’s coming. Maybe nothing. Maybe a miracle. Maybe a quick return to the drug. We’re not fearful – just uncertain.

The longer version…

As has been the case for the past few years, Aida’s latest scan in November indicated that the lesions inside her body are stable or (very) slightly smaller. That said, she grew FOUR inches last year, so I like to celebrate that they’re proportionally smaller. Beyond that, several of the visible lesions have improved significantly, and at least one has completely disappeared!

It’s been the plan all along to wean her from the medication after that major growth spurt (1^st grade-ish) with the expectation that she will restart it when puberty begins. The reality is that the long term effects of this drug are unknown. As I said before, we’re taking it very slowly (probably 6 months to fully wean) and watching closely. Barring any crazy developments, she’ll have another MRI in 6 months or so (as opposed to a year) to see what might be happening inside.

We’re a few weeks in and the dose is down 10%. So far, so good.

Thanks for continued prayers, love, and support.