Over the last few days, I’ve noticed several comments that were concerning to me. I want it to be clear that Kai is stable, she just has a lot going on right now. She is stable enough to not be in the PICU, but she needs a nurse one to one right now as we work out her oxygen needs. I know all of the machines are intimidating to see. It’s very difficult for me that I can’t even pick her up because it makes it harder for her to breathe. I hate seeing her stuck in her crib. I know that it is scary that Kai was sleeping for days. You would sleep too if you hadn’t in months. You would sleep if you were hooked up to machines that alarm and beep all day & night, if you were poked at every hour of the night, & had dozens of medical personnel in your room at every hour talking about your care. You would sleep as much as you could after a year of harsh treatment that consisted of the most toxic chemotherapy drugs, immunotherapy, proton radiation, brain surgeries, numerous other surgeries, transplants, several blood & platelet transfusions a week, & so on. You would sleep if you have fought your entire life for your life. You would sleep after beating stage 4 brain cancer. You would sleep & dream up grand adventures of the day that you won’t be confined in a hospital room. Kai slept for a few days, but she has been much more active & responsive the last few days. She smiles & giggles when she hears my voice. She has wanted to listen to music, be read to, & to hang out with Ritz. Kai has defied the odds time and time again. Even golden warriors need rest & time to heal, too.
#kaicanmovemountains #throwback (at Building Hope- Seattle Children’s New Building)