Everyone has a story.

One of the lessons I've learned recently is that everyone has a story to tell.  I think I always knew this, but after our recent experiences, I realize it even more.

When Matt, Kate, Ethan, and I went out to lunch the weekend that Anna was on the ventilator, a manager of the restaurant came around just to check on us and see how things were going.  He said something like "Do you guys have any plans for your weekend?"  Matt and I simply looked at each other and responded with something vague about how we were just going to hang out at home.

Whenever we are doing the kinds of things normal people do under normal circumstances (grocery shopping, filling up the car with gas, driving to and from the hospital, etc.), we are more acutely aware that we have no clue what the people next to us are dealing with at any given time.  Just looking at us when we do these things, no one would necessarily know our story, so how can we have any idea of what someone else's story might be at that point in time?

At the hospital we have met some amazing people.  Not just because they are really good at their jobs (and they are!), but because they are genuinely good people.  Given other circumstances, I would love to be able to sit down over lunch, or a cup of coffee, or a beer (assuming I'm not too tired), and hear their stories.  Where do they come from?  What is their life like outside of the hospital?  What are their days like at the hospital when they are not in our room?  Do they have any kids?  What are their kids like?  What made them decide to become a nurse, or a doctor, or a therapist, or a cashier or housekeeper at a children's hospital?

How do you live at a hospital for weeks on end, go through the kinds of experiences we've gone through, and be expected to not build relationships or even friendships?  (Especially if you're someone like me who likes to make new friends.)  And yet we're daily trusting these people with our daughter's life.  Still another part of life for which we were unprepared.  At least I'm starting to be known by my first name here and not just "mom" :)

Enough of that.  We made it through our "second Wednesday" without anything too major.  Anna had to be retested for c.diff again today (that nasty intestinal bug she had at the beginning of the hospital stay which required us to be on isolation); the results came back positive.  So we're back to wearing yellow gowns.  Oh, well.  At least we know how to deal with it this time.  Our 24 hours without the gowns was nice.

Unfortunately, when a kid is positive for c.diff, they aren't allowed to take anit-diarhea medicines because the goal is to get the bad bugs out of the system, not keep them in.  However, one of the side effects of Anna's radiation is loose stools, so her poor body is having a hard time keeping any nutrition in her system.  We switched her today to an easier-to-digest formula; hopefully that helps her a bit.

Anna's day involved her XRT, speech, and OT/PT therapies, in addition to many visits from doctors and nurses.  She also had a visit from some of her church friends (which included their moms, who are my church friends).  Anna really likes seeing her friends, but it can be hard on them to see their friend who doesn't exactly act like the same Anna they remember.  Still, Anna likes to see other kids.  She's been cooped up with lots of grown-ups for a long time and just misses seeing other people her age.

Tomorrow we have a scheduled care conference to discuss Anna's progress and think about when and how she may be able to visit home.  A day pass this Saturday is a possibility, but I'm not sure that Anna is quite ready.  I told her that going home for a day would require sitting in a carseat twice and sitting in her wheelchair at home.  When I asked her how that made her feel, she said it sounded tiring :(  If it doesn't happen this weekend, maybe she'll be strong enough for a visit next weekend, assuming that she continues to improve.

I also talked to Anna this week about how she will lose her hair; in fact, it's already started slowly coming out.  I told her that she doesn't have any control over whether or not it falls out, but that she has control over how it comes out and what to do once it's out (hats, a wig, or nothing).  At this point she could have a fun haircut and style now, get it cut really short now, or just wait for it to fall out.  She chose to have it cut short; we'll see if she sticks with that choice tomorrow.  If she does, she may have a new do by the end of the day.

Time for prayers

Thanksgiving
Please give thanks that Anna is continuing to tolerate her treatments well and that her side effects haven't been too serious yet.
Please thank God that my mom has been having the wisdom and strength to make it through this week; she's "on duty" at the hospital tomorrow from about lunchtime through Friday morning.
Please give thanks for all of the little supports that we have been receiving from friends and family.
Please thank God for the strength and encouragement that Matt and I have been feeling lately.
Please continue to give thanks for the wonderful care Anna is receiving; it's truly second to none.

Requests
Please pray that Anna's new feeding plan helps her gain weight.
Please pray that Anna's little bottom doesn't become too sore; any kind of diaper rash can be dangerous for a kid on chemo.
Please ask God to be with Matt's grandmother, who is in ill health.  She was transferred from her nursing home to a hospital this week.  Please pray that she and her family feel God's presence during every step of her journey.
Please pray for Matt's family (parents, sisters, and family) as they all plan on travelling here to Madison this coming weekend for a quick hello and visit.
Please ask God to give my mom strength and wisdom as she plans on another long shift here at the hospital.

Thank you, as always, for your prayers and support.