We actually have quite an update today. Bri woke up with a rash on her wrist. I took some photos of it and sent it over to her Oncology nurse. It reached the PA and Dr a lot quicker than I anticipated. The PA called and said it COULD be an LCH rash and they want to biopsy it ASAP. So… I circled the rash with a sharpie and they set her up with an appointment Thursday morning. If we get a diagnosis of LCH from the rash then she wouldn’t have to go through brain surgery. HOWEVER this would mean she has something called multi-system LCH. Not many other details yet…other than it will be a punch biopsy and require a stitch or 2. Piece of cake.
Bri had a bout of mood swings today that was short lived but tested my patience. We had a talk about her anger the other night and she told me that she wanted to be happy but she couldn’t stop being mad… also mentioned that it was like she had someone else’s brain. I know it’s related to the tumor … specifically the location of the tumor.
I’m finding it incredibly difficult to concentrate at work now. I’m also still in a weird funk - not wanting to talk, insomnia, napping too much during the day. I take meds and they do work, but every new day brings more unease. I’m at that point now where it’s, please let’s figure out what the hell this is so we can get to the next step of this process… even though the next step sucks. Treatment for LCH is a year of low dose chemo. Treatment for germinoma is radiation and stronger chemo. So there’s that.
Bri understands more of what’s going on than we all realize. I haven’t gone into detail about treatment and how that will impact her. I figure - one bridge at a time and we’ll cross that one once we get there. I’m just honestly trying to keep as normal as possible now, until it’s not.
I started this blog because I haven’t really wanted to talk… but writing does help.
I also wanted to toss out a blurb that I appreciate everyone who has reached out ❤️ It makes my heart happy.
Much love -Christi
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