Phoebe made the move out of ICU and back down to the oncology floor today. She’s back to telling the nurses that the beeping machines are annoying, so I know she must be feeling better! It appears that her “blip” was indeed a reaction to the platelets although the she didn’t really present in the typical way that people do when they have a reaction. First she got very lethargic, then she turned white and her lips were as pale as her face so they took her for an emergency CT scan to check and see of there was tumor growth in an area that might cause obstruction. The CT was clear but while she was in the CT her eyes and lips started swelling up. She had some red splotches but no hives which is usually the first indicator that an allergic reaction is taking place. The Epinephrine was administered alongside a stress dose of steroids and immediately the puffiness receeded and she returned to normal.
A stress dose of steroids means an all night party since she can’t sleep, and Phoebe had lots of fans visiting her room during the wee smalls last night. Her favorite ICU nurses stopped in to play and others who know and love her came by. When I got there this morning there were still streamers hanging from the ceiling!
Deacon came with me today and spent all day with his sister. He was in hog heaven. I love seeing them together. He climbed right up in her bed, took his shoes off and they colored, put stickers on each other, played with play-doh, sang songs and talked. It warmed my heart to watch them banter back and forth like little people do. She was so content with him and I’m sure it was nice for her to have someone her size in bed with her. He never got bored, never complained, just enjoyed his sister and being there with me. It was a good day.
Tomorrow we are going to “Gilda’s Club” for the first time. Gilda’s Club is a program that Gilda Radner started to connect families afected by cancer. We will go to an informational meeting while the boys go to a Magic Show they’re having for the kids. We are looking forward to meeting other families walking through cancer with their children and will hopefully become more familiar with the resources available to us during this time. They have get togethers, zoo days, parents night out, family picnics etc. We have been blown away by the incredible people here in our neighborhood, and I expect that God has more wonderful friendships awaiting us as we connect with other cancer families.
Thank you all for standing watch with us these past 24 hours. It was a sudden and scary shift, and we are grateful to be on the other side of it. Phoebe is already on day ten of her chemo cycle, on day 14 her immune system will start revving up again! FOUR more days until we can take a big, deep breath and say “whew!”.