It is our fourth weekend spent in the hospital. We finally got moved upstairs to the surgical recovery floor. We waited through three days of being told there was not a room available for her, then suddenly, at 1:00 am, Chris got the signal to move. Time, let alone sleep, means nothing in this hospital. When they say go, we go.
Now, Scarlett is resting comfortably in her regular crib (she had been in a heated bassinet in PICU). She is surrounded by a menagerie of stuffed animals that her daddy decided she needed to keep her company. She has also started eating like a contestant in an eating competition - 4 ounces ever few hours, and finally gaining some weight (about 9lbs 11oz now).
We haven't heard about the liver ultrasound yet. As soon as I see a doctor this morning, I will press for answers. Changing floors means changing primary doctors (the surgeons are in charge of her care, but they see her once a day) and that means I have to make sure they are tracking all the issues we were watching in PICU. the rash has gotten better with some medicated lotion. Several doctors have looked at this rash, and they have all agreed it is nothing serious. I have very sensitive skin, so it is likely that she does too and is reacting to something around us.
Yesterday, we met with our awesome oncology team at Stanford. They laid out the options for continuing treatment. We are still making some decisions, but it looks like Scarlett will begin chemotherapy very soon. It will likely entail cycles of a few days in-patient, a few weeks out for the next year. We are looking at enrolling her in a research study that is done locally in conjunction with St. Jude's Children's Research Hospital. The study is good because it is showing some good results with other kids, and it has been continuously running for a few years now. We are also determined to have Scarlett's experience help other kids in the future, so including her in the study contributes to the greater knowledge about these tumors. However, the study protocol might not be quite right for Scarlett over time, and the doctors have assured us that if she needs something else, they will drop the study and give her whatever she needs.
I'll write more about the process of chemo later; it's overwhelming to think about sometimes, especially the side effects. However, we remain optimistic that Scarlett will continue to be strong and come through this.