Sunday, April 27, 2008

Day 4

Audrey, Nathan, and Grandma Donna were here this weekend and it was lovely to be together. The logistics of lots of people feeling good in a little room and Marian feeling good about Mama leaving are a bit tricky to manage, but worth it. We need each other.

Yeah, so still no photos. New computer, new camera, new software=very slow editing while I keep forgetting the right tabs and prompts. Plus, dumb new Windows Vista (I don't know if the clever Mac commercials are right about the problems, but I don't like it because I'm just more familiar with good ol' W98).

Marian is getting sicker. Expected, but still sad. Today when I got back after having a sleepover with Audrey & my mom at the Ronald McDonald house ("the house that love built"--seriously. I am so moved my each of my stays there), she had dark circles under her eyes. Nausea started a couple of days ago, but she had her first vomiting today. The liquid bowels continue, but, intestinal drama being "our thing," we are not easily impressed (okay, I still am). Marian is, of course, a tough little chica, and we had giggling and cheerful chatter now and then, but her stamina is slowly decreasing. More napping, less sitting up in bed, and shorter fun periods. She did a bit in a Bible activity book with Grandma while the rest of us slipped out to attend church together, but that was it for her activities today besides Webkinz with her sister. She was delighted to play Webkinz remotely when Audrey got home (each on their own computer & talking on the phone), but 15 minutes was plenty.

As Marian's cell counts drop, her body is less able to do its repair and energy work, while the effects of the chemotherapy continue. I understand that the worst time is when her new cells start to grow & wholeheartedly dive into the work that had been neglected by her mini-to-gone-immune system in the past few weeks. All sorts of inflammatory work going on. Planned pain, I suppose, but the most difficult part. We hope, now, besides for the new cells to grow & thrive, to avoid (1) introduced infection and (2) graft vs. host disease--GVHD--, the battle between sisters' systems. Our risk of that is minimal with a sibling donor, but some skin problems at least are likely. Sigh.

I love being with her here, though (stressed when I'm gone, though I do treasure the time with Audrey while Nathan sleeps over), and am glad for our friendship. Plus, we're well into Little House in the Big Woods and I missed those books :).

1 comment:

Miss to Mrs said...

I got my t-shirts over the weekend and am wearing mine today in support of her. I'll deliver the others to my friends this week so they can support her also. I continue to think of your family everyday and pray for you. You and your family are an inspiration.