monday 11/23

I know it is Thanksgiving week and I truely do have alot to be thankful for, but I am attempting to be so very honest through this Leukemia journey. And it stinks. It is so very hard. So much harder than you should ever have to imagine or go through. Piper is now 4 months old and is beginning to have such a personality...good and bad. She has many times of fighting sleep. She wants to be held so much. She doesnt smile or laugh much anymore. I am having such a hard time knowing the differance between her genuinely not feeling good and just being a moody/fussy baby. I want to console her when she is in pain...I want her to develop and grow as normal as possible. And its just not going to happen. I want to begin her on solids but because of her mouth sores, I dont feel like it is wise. I was told she could have food aversion issues because she will correlate "food" and "pain", not good. I often feel like I am re-doing those first few weeks at home...cry...catnap...eat small bottles...hold...repeat. She is such a sweet baby but I am struggling with feeling like I am missing out on so much. I know in the big scheme of things it will not matter. That I have bigger issues to deal with than whether she eats solids or a 3 oz bottle...I am daily fighting with her for her life. I just, selfishly, wish for her to be a typical 4 month old baby girl.
And after all of that I have to say she is doing pretty well. We were able to go home last Thursday until the 30th of this month. As of Thanksgiving day we will be done with 2 of the 4 phases that make up the most intensive time of her chemotherapy and treatment, both medically and also with us physically being at the hospital so much. To say that Piper has blown through it would be correct. Not without side effects but with minimal side efffects, especially compared to what other patients go through from the beginning. I feel very held by God...thats the only way I can explain it. If only I could control my human jealousy of others, and focus on what I do have.