Jane had a birthday the last day of 2017 and we loved spending it with family! The emoji cake made by Carrie's Cakes through the Icing Smiles foundation was ahhhhsome. All Jane wanted for her birthday was my old digital camera, which I did give her, and is already having issues. Hoping its just the battery because I want to see more of the videos she takes of herself. Priceless.
We had a ski day with my mom and siblings/kids while Jenn was in town. Loved being up there together. I always had a season pass from the time I was in Jr High through the first few years of marriage. I went, a lot. But now its just as satisfying to get up for a run or two and see the girls have fun and be together. I haven't been able to spend much 1 on 1 time with Ruby on the rope tows, but when we were there with cousins I stayed with her and made her do the work. A few tears, but she's perfected the pizza and by time we left she said skiing is her favorite sport :)
We've been going weekly to the hospital. She takes the med orally daily, but we go weekly for checks as part of the trial. We even had a bonus visit late last Sunday night. She had a fever and anything over 101 you need to go to the ER if you have a port. So off we went. Left about 11pm and were home by 1:30am, which I thought was nice and short! It was hard for her though. The nurse missed her port the first time and had to quickly take the needle out and get it in the right spot. Then they put a gigantor swab up her nose which has likely scarred her emotionally for life. She did get a red slushie and a giant box of tic tacs out of the whole ordeal so she'd probably say it was worth it.
Yesterday was the first day of cycle 2 of Entrectinib (each cycle is 28 days). So we were there from about 8:30am-5:30pm. Blood draws, eye exam, ecg, urine sample, more blood draws, physical check up. One of her aunts came to visit, ipad time, we watched Moana, had lunch over at the University of Utah hospital (spaghetti and meatballs and fries per her request) then walked the long way outside to go back. We had to go back today for a 24 hour blood draw and she kept her port accessed. She has another rash, but seems more viral than a side effect. Between finishing later at the hospital, the rash, and having her port accessed, she missed her cousin Sam's birthday party. She was crushed. Devastated. The sorrow made me recognize the joy she's had in being pretty normal through all this cancer jazz. Its been almost 2 years. So when we got home I gave into her request to watch Beauty and the Beast and sisters brought her home pizza and a goodie bag from the party (thanks Liz!).
I thought the next scan would be in March, but the trial has you do one after cycle 2, 4 and 7 I believe. So she has one scheduled for early February.
Thank you Liz for being with Annie, neighbors for dinner, the doctors and other moms that I get to chat with and learn from while we're there.
Fever at the ER
indoor soccer is starting!
She had a high fever last week.
So sad, but she's feeling better.
