Sam and Bran and Ella and Anna

Oh My Word.

Today has been good but it is so hard. So hard. We got home about 5:30 pm and Anna went straight to her room. She has been watching tv in her room since then, I set up the laptop with Despicable Me, she watches it on repeat. We brought her out to give her a quick bath - she is required to have a full bath at least daily now - and then popped her right back into bed.

The site where her cath sits - it is so red and swollen - and looks so miserable. I literally cannot look at it, it is so wrong, a giant lump is NOT to be visible *under* your child's chest. She keeps calling it her, "my surgery" or "my surgery on my privates." I was totally confused by the privates until she pointed at her chest. :)

Being home is great but it totally sucks! How contradictory, maybe I'm on the steroids for treatment. I'm totally freaked out, I'm going to do something wrong, she's going to get sick, we're going to bump her port, I'm going to give her the wrong med, feed her the wrong food, mis-dose her med, mix up something, she'll spike a fever - there is SO much to worry about.

I feel horrible and scared and out of my ever-loving mind. It is supposed to be healthier for Anna to be in our home germs than at the hospital. I probably spent half an hour tonight checking and rechecking and rechecking her meds and dosages again. I am utterly overwhelmed with the magnitude of this responsibility. Sam says it is a lot like bringing home a newborn.

This is worse - I was never this scared bringing either girl home. I felt reasonably confident that nothing I did was going to cause them serious harm or illness - I don't have that same confidence any more. I'm afraid to touch her or hug her because I don't want to give any bad germs to her. Or hurt her in any way. Did I cook her food properly, wash my hands enough, make Ella wash her hands enough... Horrific. Almost paralyzing. At the exact same time I just want to wrap myself around her tiny body and cocoon her and just hold her close to me and never let go - Anna, not being the cuddly type, this would never fly. "Momma, please quit hugging me." I try and avoid bothering her these days.

Tomorrow we go into clinic for our first outpatient visit. They'll do labs and probably give her at least more platelets, if not both blood and platelets. Her numbers were quite low today, again, totally expected but still unsettling. She got both blood and platelets early this morning with the expectation of going home today. So, for several hours on Tuesday and pretty much all day Thursday we are at Children's.

Thursday is Day8 - big day in ALL-land. Well, every Thursday is big dose chemo day but this Thursday is the treatment directly into her spine as well as the bone marrow biopsy. This Thursday determines the next course of her treatment based on the biopsy results.

OH - to add to all this - evidently for the first three days post chemo treatments she is kind of dangerous. Her fluids and body excrete chemo - now, I am HOPING that none of her therapies I have to mix up myself (sometimes families do have to mix the chemo themselves!) - I will probably have a nervous breakdown. I am also hoping that in the three day windows Ella doesn't get exposed to Anna's poisoned bodily fluids. So, if at any time we have to take Anna to the ER, we need to make certain they know she's chemo-positive or some other term. The normal gowns they wear while she was in ISO - nothing at all like the chemo gowns. They are longer, heavier, thicker, plasticky-er - and put into a special receptacle, to be incinerated. Excellent.