end of another week

Finishing up week 4 of radiation. Today was treatment 18 of 31, more than halfway through. Sophie has also been tracking how much longer she has to go to "proton center," with her sticker chart, and she is seeing light at the end of the tunnel. At Procure, when folks finish up their treatment, there is a short ceremony in the waiting room with loved ones that come, or others they have met while being treated. Usually the patient brings in some extra goodies for everyone, and it's a nice milestone to celebrate. Soph saw one for an older child, and asked if she could have a party too. So when Feb 13 rolls around, we're going to have some sort of a small party for her. Maybe a local indoor gym/playplace, we'll see. Maybe we'll finally take her to Chuckie Cheese. (She always notices them on the road, and points them out. I always wonder how she even knows about it, b/c we've never been nor have we mentioned it)

Otherwise, we taking each day as it comes. Last weekend was not fun, both from hair falling out to Soph not eating much at all, but this week has been better. She has lots most of her hair, but still has some left, and it still seems attached to her head. She's also had a better appetite, in general, thank you for all of your prayers. I think they are working. But we will also get an appetite stimulant tomorrow, as she continues to lose weight each week. This week was not as much (0.5 lbs), but the continued downward trend is concerning. Hopefully with the stimulant, it will plateau or start to go up.

It's funny b/c with every meal, if Sophie is not eating, we will offer her every alternative we can think of, most of which she declines. But Selah will hear all of the options, and immediately jumps in with, "I want that!" I've mentioned this before, but little sister has no issues eating. She will try most anything, and has no internal switch to stop, unless we cut her off.

The moms switch this weekend. Jeannie's mom, who has been with us for 2 weeks, will go back to work/life, while my mother will come take over watching Selah, taking care of the house etc, for another 2 weeks.

I keep mentioning this, but it's just all still unreal to us. I can't believe I'm part of a facebook group called Parents of kids with medulloblastoma. I read everyone's stories there, many of which are eerily similar to ours, and just can't believe this is our life. Sometimes reading that is not good either, b/c there are some folks who are farther along than us, and life gets worse before it gets better, if it gets better at all. Ignorance is bliss in those times, and I just hope that Soph's side effects and/or reactions to the different chemo drugs later on will be different than others.

For those of you who are curious, or fluent in medical terminology, here's a link to ACNS0331, which is Sophie's treatment plan. Radiation for 6 weeks, 4 week break, then various chemo drugs for a year on a monthly or weekly basis. It will be a long year.