Decadron (or Dexamethasone) is the steroid that Elizabeth has to take as part of her treatment. Decadron is great that it may kill some cancer cells, and increases the effectiveness of other chemotherapy drugs as well as help raise the immune system. I am grateful for all that it does in treating Elizabeth's leukemia, but there are side effects that are hard.
Of all the drugs Elizabeth takes she has the most side effects from Decadron. The side effects that Elizabeth is experiencing include an increase in appetite, difficulty sleeping, red cheeks, headache, red hands, weight gain, puffy cheeks, muscle weakness, less able to deal with stress, irritability, personality changes, mood swings, fatigue, and it may be causing the bone pain. Some of these are not very bad, but some of these side effects are a real struggle to deal with. Because of all the side effects Decadron is my least favorite of all the drugs Elizabeth has to take, and it's not even chemo.
Dealing with Elizabeth's emotions while she is on Decadron is the hardest part. She becomes very emotional about lots of things, quickly getting angry and sad. She wants me to be the one to do everything for her (get her food, change her diaper, tuck her in, carry her, etc.), not even letting Brian do things for her a lot of the time. She gets very upset at others, yelling, hitting, saying she doesn't like them, etc. She wants things done her way and really does not like being told no. When she gets upset it can be hours of working to calm her down.
As I have described some of this to other people, they have casually stated something like, "Sounds like a normal three year old." Honestly, that is hard to hear. It is not normal. If you have experienced it with your own child being on Decadron for more than a week, then we can discuss whether or not it is normal. Dr. Gera has seen Elizabeth on and off the Decadron, and she knows this isn't normal Elizabeth. It was so nice to have her turn to me, the other day while we were in the hospital, and ask if I was going to be able to be relieved for a time. She understood how much of a burden it is taking care of Elizabeth with her Decadron emotions. It's not that I don't love Elizabeth, because I do love her very much that I want to be able to have the strength to care for her. It's so draining, and sometimes I need to replenish myself to be able to continue to care for her, but doing that is hard at times. This last week there have been nights that I have been up with Elizabeth and just broke down crying. I look forward to having the side effects of the Decadron fade away.
