Not much has changed or happened in the last few days. Scarlett has some mucusitis (mouth sores) that we are treating with a new medication that seems to help. We are waiting for her chemo to clear her system; blood levels are still high, so I don't expect it to be clear until Monday, which means we'll just stay to start the next course on Tuesday or Wednesday (I made a deal with the doctors not to send us home for less than 2 full days - I'm not sure I could deal with packing up and going home with just enough time to wash everything and come right back.)
Yesterday we got to see her latest MRI. We knew it was clear and clean (no tumor!!), but we wanted to see it. It is AMAZING how well she functions when you see that MRI. Where the tumor was...is just a hole, about the size of an apple, I'd guess. Her right hemisphere has expanded a little, so the midline is almost centered. There is some remaining left hemisphere tissue in the frontal, temporal and occipital lobes. Other than than, it's just a hole filled with fluid. We got confirmation (or reassurance, maybe?) that the tumor grew with her brain in utero; the left hemisphere never developed fully. Maybe our fascination with these images is a bit morbid, but seeing it makes it so much more concrete and easier to understand (I'll get an image to put up someday.)
During this meeting, we also discussed the next steps with her hearing. The neuro-oncology team was very surprised to see such loss in such a short time; with the unexpected complications of the infection and need for antibiotics, which all contributed to her hearing loss, she lost a lot of hearing in just two months. She has other confounding factors as well, like the thin and missing bones on the left side (which will grow back eventually) that don't allow the sound to resonate properly in her head.
Good news: She may regain some hearing. We are changing her chemo plan a little to use a less ototoxic medicine (which may also be easier on her nausea - yea!). However, from the current test results, she will likely still need the hearing aids. This doesn't really bother me too much, though I can't imagine how you convince a toddler to keep hearings aids on! We will have another hearing test in a few weeks to confirm and remeasure, since the infection and antibiotics will be clear by then. Hearing aids will be fitted and in place by the end of June, we hear.
The best news for little miss: we are beginning cereal! I am not sure why this is so exciting for new moms - it's messy and takes time to organize, but it is so rewarding to see her eat! She's not a big fan yet......but she's tolerating the cereal and my goofy encouragements. Her occupational therapist felt she was ready and wanted to see if she could handle it, and I think she has done great. They are encouraging us to keep it simple and fun, not to expect too much too soon - they are calling it "recreational purees". It's great to see her doing well with something that other 6 month olds are doing!