Things have been a little off balance since we got home from the hospital. First off, there is a whole lot of no sleep happening. We have been so busy trying to get things together for her next stage and researching all her options, as well as working on fundraising and the house. Needless to say, when the baby is sleeping or napping, we are working until we crash. The baby has done ok the past couple of days with sleep, but the first few nights were rough (that's what happens after hospitals stays though, so we knew it was coming).
We have also been working on balancing her new maintenance medicines. The doses they started her on were a bit high, and it made her nuts for the first two days. She threw a couple of fits on Saturday, so we called the doctor on call, and had them check her dosages and see if they could change anything. We lowered the dose of her salt medicine the first day, which helped right away, and then the next day we dropped her overnight dose of hydrocortisone which helped with the mood, and also made it so we didn't have to wake her overnight for medicine. Changing that made a huge difference, and we were able to have our happy baby back, and weren't being attacked at dinner time.
Monday we went into Jimmy fund to have a meeting with the doctors and to schedule her re-staging tests. We spoke to the doctors about her response so far, and talked to them about possible other options for the next step of treatment, expressing our concerns about the heavy dose of chemo now that she has lost her adrenal glands. They are so great - they are glad that we are looking into our options, and will help us however they can. Of course they think that, because of how she has been doing, she will do well with the stem cell transplant, but we just want to be sure that we have done our research and have chosen the best option for her. We have about three weeks to make a final decision. I'm feeling the pressure, but it's important for us to look into everything we can. We owe it to her to look into all of the options available, and to choose the one that will balance destroying the cancer, and having a great quality of life after her treatment is finished.
Today was an ok day. We know that she is showing signs of mucositis, so we are keeping her full of pain medicine to try and help ease the pain and stave of a fever. We started the day with a little play date, which Saoirse wasn't totally into the whole time, but Ginger had great fun pulling the toys off the new shelves. They did do some "sharing" and chased each other looking for trouble, but Saoirse really was feeling off. She did eat, but she definitely isn't feeling like herself. I'm pretty sure we will be at the hospital in the next couple days, as her temperature has been creeping up, but hopefully her counts will be starting to rebound on Thursday, and we will be able to avoid a long hospital stay. We will be working on lots of tests anyway, so I guess if she has to go in, at least we will have something to do while we are there. I just hope she feels a bit better tomorrow.