Up and Down & All Around

Our appointment with the doctor was fine on Monday. He thought Brooklyn was looking good and is still reacting to everything just as she should be. We got the schedule for the next month however and there is a lot more treatment coming up, so we think it is probably not the best time to switch her Broviak to a port. We just don't want to cause her any more pain when she is going to have so much medication that could make her feel bad anyway. We also found out that she has to go back on steroids. It won't be 28 straight days like last time, but it is 7 days on, 7 days off, then 7 days on again. Hopefully, it won't be as bad as last time, the crazy hunger and the 'roid rages, the midnight snacks... they said that just when she'll be ramping up to be that way, we stop them, so hopefully they are right. It may be a little different though because the dosage is higher, so I suppose the side effects could come on sooner than last time. They also said that this next round will probably wipe out the rest of her hair. When we left the appointment, I cried a little. I think it was hard because we had just come back from such a fun weekend with friends and everyone feeling so well and enjoying time together, that to have such a stark dose of reality really sucked. She is right on track with everything and so I know this is just part of the process, but it is difficult because she is looking and feeling so good right now, that to make her take the awful steroids again, and possibly put on weight and be uncomfortable and have new kinds of chemo that could make her feel sick, and to have her hair fall out - is all a lot to take in. I told her last week that some of her medicine might make her hair go away but that she would always be beautiful and she said, "But me a girl, not a boy." I told her she would still be pretty and still be a girl and that we have lots of pretty hats she can wear. Ugh. It is crazy because she already has some new little hairs growing back in from when she lost so much the first time she was on steroids. Seeing a bald kid makes you know they're sick. Right now, you can't even tell anything is wrong with her. I know that she is sick, but I also like to see her feeling so good - just like any normal, healthy kid. Mike reminded me that this is the last big push before we go on maintenance - which means much less chemo and fewer visits to the doctor. It is a good thing because we are moving along at the pace she is supposed to, it just makes me sad to know we are going to make her feel bad again. I made the kids pancakes this morning and I was having flashbacks to when I was making them so often in the beginning. She probably doesn't even remember that - which is a good thing. We have this week off, with no chemo or surgery, so we are enjoying it! We've been playing outside a lot and we went to the park today. It is so much fun to just get out and play with the kids and enjoy their laughter and silly-ness. They had a blast playing on the tire swing this afternoon. This whole experience is kind of like a ride on the tire swing - it not only goes up, down, but side to side and around in circles. It's crazy and you don't know what to expect, but we can always find a way to have fun. I think our appointment reminded me to take the time to enjoy these days with the kids, and not worry about the cleaning and housework as often as I normally would. It will all still be there to do tomorrow. :)