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neuroblastoma February 6, 2017

Filed under: Uncategorized — springtwist @ 9:04 pm

its quiet up here, and a bit lonely. our room is teeny.

luckily we have a window that looks outside this time. theres some giant light thing running up and down the side of one skyscraper, pink. doesn’t seem to have a purpose, but its fun to watch zip up and down.

theres stickers in this room – put here by other kids who have lived up here in the past. its really sweet actually. like little tokens left behind. from kid to kid, a sort of cheerful message. we were here before you. like a guestbook maybe.

i do not like this room. theres no bathroom. in our old room we had a litle mini fridge in the room with us, which was a great blessing. when i am the only one here with her and i cant go down the hallway to find lunch, having a fridge in the room was so good. obviously we can manage fine without the fridge but the bathroom is more annoying. every time i need to pee i need to call a nurse to come sit with thalia. i can manage that too of course. but still – annoying.

everything is frazzled. i feel like i should have my own bravery beads as well. i am being brave too.

my mom was here all day and yes she was helpful for a lot of it, but in the evening she just started going on and on in a one-sided heart-to-heart conversation. “i just know she will be fine. and im not being silly. i just look at her, and i know that she will be fine. i feel it” erm, yes that is actually quite silly. whatever. i guess it depends on what your definition of what’fine’ is. here is a small collection of the side effects we can pray we don’t get in the future: infertility, hearing loss, heart problems, higher chance of getting cancer as an adult, early onset menopause (early being like age 14 if we don’t do anything about it.) this girl will be on hormone treatments just to get through puberty. she will never have a period. she will never conceive naturally. she might come out of this being hard of hearing and needing hearing aids and speech therapy. the cancer might decide to spread to her spine.

jims dad just invited himself over tomorrow. just have the grace to ASK first. we are going through chemo, i have work to do at the same time, i can play hostess all the time. i tried to gently tell him that we already have my aunt and cousins and another friend coming, and he said “great. I’ll be there in the afternoon.” dunce.