First Chemo Outpatient Treatment

"Get in my belly!"

This week at home has been fun so far. We are still figuring out how to make our adorable "Chubby Hulk" aka 'Chulk' baby happy when it comes to food. Her routine is totally out the window when it comes to her meal times and sleep schedule because she wants to eat about every 2-3 hours. The tricky part about it is that she is really inconsistent with what she wants and likes. One day she wants grapes, and the next day she hates them. For two days all she wanted to eat was slices of bread, but now wants nothing to do with it. We are not sleeping well either and have gone back to trading nights of who gets up to feed Chulk, which was our newborn schedule for the girls when they were babies.  Picture getting up in the middle of the night, trying to get her not to scream because she is starved and then walking her around the entire kitchen letting her point and nod to what she wants. One of the funniest parts about this is when we debrief in the morning about how the night went and talk about the crazy menu we prepared for her. For example we could say, "At 2:00 am I fed her a slice of wheat bread, a slice of american cheese, 3 saltines, 10 gold fish, pulled pork, a slice of orange, two strawberries, a cranberry muffin, Cherrios, half a gallon of milk and a gerber cereal bar. Its like the World's Fair buffet! 

Today Sinatra had her first outpatient chemo treatment at the Infusion Center at CHOC. During the last three weeks of this round of treatment we will be at CHOC for appointments or procedures at least once a week. We had an opportunity to play a bit before hand, talk to the doctor, and had a nurse make sure that we had properly applied Sinatra's numbing cream prior to her procedure to ensure that she felt no pain while receiving the chemo. They took great care of her and us during our first visit.

We were not completely surprised to see that Sinatra had gained significant weight based on her new crazy eating habits but we were shocked to find out that she had gained nearly 5 lbs in less than 3 weeks! For a 20 lb little person that is a ton of weight! We were slightly concerned about progress in this area but our doctor assured us that at the end of January when she starts her next phase of chemo she will most likely loose this weight plus some. Sinatra's blood counts were overall acceptable but based on the way she is trending we are guessing she might need blood at our next appointment this week. One of the more concerning results was that her ANC was a 287 which is the lowest point we have seen since she was diagnosed. This means that we will definitely be keeping her away from people and germs until we see it come back up.