Only three more days until this round of chemo is completed. Once Wednesday passes and Pipers counts begin to improve, we will be hitting the ground running.out.of.here.
I found out today that St. Jude is pretty packed. There is the hope to be in there the end of November but this is only further proof that we really have no idea what the next step will be. We know what we want to happen...but no movement yet. I have no idea what plan B is. Please pray for the doors to be opened and that Piper will find her place in their studies
Piper is doing well. She continues to have fevers at night but all of her cultures are still clear and good. She has a rash that moves about her body, sometimes coming and sometimes going...its so very odd. Hopefully it is only the sorafenib but it will probably be biopsied when her counts recover to rule out something bacterial if it is still present. No mouth sores or diaper rashes apparent, thankfully.
She still has an ANC of less than 10 but she had some pretty achy legs this morning and they are thinking it could be her counts coming back up. When that happens its not uncommon for kids joints to ache and be sore. Lortab this morning got her back in shape and running the halls. Still nibbling a bit but no real appetite to speak of.
Piper has officially lost her hair. Within the week that she had the last of her hair shaved off, we are beginning to see a little bit of regrowth. Its so soft and downy. I remember well how victorious I felt when Piper had her head of blond hair and no leukemia showing in her blood work. I ache to see her the way she was before she relapsed. While I know well that this is only hair, in our situation it is a big milestone and one that I pray we can quickly achieve again and permanently.
We are all growing tired of fighting this, of being apart from each other, from planning for days not weeks, of pull out couches and cafeteria food, of wondering what will happen to this family that we have worked so very hard to put together.
Its not uncommon in this lifestyle to be told "God wont give you more than you can handle"...I think this is ridiculous. Of course He will. And has. Otherwise I would not need Him and these days I need Him more than I ever have, although I cannot help but wish I were able to softly lean on Him not find myself clutching at Him and sobbing.