Ups and downs

Boy, if I thought I was having mixed emotions earlier this week, I obviously didn't know what the last two days here were going to bring.

First I'll share some of the good stuff.

1) Anna is down to four more days of radiation.  Woohoo!

2) Anna was, sort of, up to her goal with feeds today and so will not be hooked up to TPN tonight.  Yay!

3) Anna has been excited to participate in her therapies the last two days ... more on that later.

4) Anna's steroids were adjusted to, hopefully, allow her some more restful sleep.

5) Anna has successfully had three radiation treatments sans sedation ... impressive!

6) Anna wanted to have almost a full cup of lemonade this evening; that's more than she has taken orally in almost a week.  She seems to prefer sour/tart flavors right now; her taste buds are also being affected by the radiation.

7) At the care conference this morning it became apparent that almost everything is in place for Anna to be discharged on the final day of her radiation (which is hopefully next Tuesday), assuming there are no unexpected setbacks like fevers, low blood counts, etc.

Now here are some of the "bad" things of the last couple of days, which were sprinkled throughout the days resulting in some pretty extreme emotional moments.

1) Since Anna is at the tail end of the radiation part of her treatment, and since its effects are cumulative, life is pretty uncomfortable for her right now.  Her skin overall is very sensitive; the skin over her spine is sunburn red; and the back of her neck/head is starting to develop blisters :(  She's very tired, and not just because she is not sleeping; the chemo and radiation is physically draining.  Her esophagus, which really hurt last week because it was experiencing something similar to "sunburn", is now starting to "peel".  She's got lots of mucusy coughs.

2) Anna was only "sort of" up to feeds today because she vomited her lunch feeding and part of her dinner feeds.  Her nurse and I think it was partly because of her esophagus/overall digestive system irritation, but we think the earlier episode was also because we tried to increase her feed volume and rate too fast.  Our bad :(

3) Anna's therapies, while going well in terms of her participation, mean that she's getting sore muscles again from using them.

4) Although Anna slept "better" last night, "better" means that she was able to sleep off and on from about 8 until 1:30ish, then dozed (but not really) until 6, before she was up and spent the rest of the early morning hanging out with her night nurse at the nurses' station.

5) Anna needed some extra coaching yesterday morning before radiation; she was upset, crying, and understandably very tired when we got down there.  But we worked through it and had a better plan in place for today.

6) Since the muscles involved in swallowing and the part of the brain responsible for this task are both getting the brunt of the radiation, Anna's swallowing skills have declined.  So, for now, she can't drink via a straw; we have to spoon nectar thick liquids into her mouth.  She didn't seem to mind too much, though, as long as it was lemonade.

7) In addition to planning for next week's discharge, this morning's care conference was also about the next phase of treatment.  In about a month, Anna will have a long MRI to see how things look, in addition to having a g-tube placed.  These procedures will require overnight time at the hospital (on P4 with all of our favorite nurses and nursing assistants, at least).  About a week after that, Anna's next round of chemotherapy will begin.  Before this morning, I was wrong about how each 28 day cycle looks for her, though.  On days 1 and 2, Anna will have a 7-8 hour treatment; she will probably require an overnight stay at the hospital for this, at least until we know how her body tolerates the different chemo drugs.  Then on day 8 she will have an outpatient chemo drug.  Then "nothing" until the next cycle begins.  However, she will be having at least one clinic visit a week here, in addition to transfusions, follow-up scans, and admissions to the hospital for any unexpected events like fevers, sicknesses, etc.

Plus, we started talking about some longer term items like summer, school, recovery, etc.  But this also reminded me of the fact that although the treatments seem to be affecting Anna's disease in the way everyone wants and hopes, she had a lot of disease, and her chances of a full cure are not particularly high because there were a lot of cancer cells in her body.  What if all of this effort on our part, and physical pain for Anna, has simply been to buy her a little more time?

Enough of the sad thoughts.

Yesterday and today were also really fun for Anna and her nurses.  After the whole "Minion" surprise on Saturday evening, Anna and I decided that we should get into the game of playing around with her nurses and therapists, too.  And since yesterday was April 1st, we decided to have some fun.

So, about midday, we got Anna into her wheelchair and hid her in the bathroom here in the room.  Then we tucked the Minion up in her bed and called two of the nurses in.  We got them good :)  Then we played the same trick on Anna's therapists in the afternoon and we got them even better :)

Last night Anna and her night nurse decided to mess with her day nurse by telling her there was a mouse in the room.  So Anna called her nurse in a few times this morning to tell her that she saw the mouse.  Her nurse (a different one from yesterday) got into the game and made a live trap for this mysterious mouse, complete with a piece of cheese from the kitchen downstairs.  But then we got Anna's therapists in on the game and they made a mouse during Anna's therapy today so we could trick her nurse again later in the day :)

I love the fact that Anna wants to have fun again.  I wonder what will happen on Thursday and Friday this week ...

Time for prayers

Thanksgiving
Please give thanks that, in spite of the physical discomforts of treatment, Anna is able to make the most of this last week with her nurses by having some fun.
Please give thanks that Anna's radiation treatments are almost done and that she is able to do them without sedation.
Please thank God that Anna was unhooked from TPN today.
Please praise God for the apparently successful care conference today.
Please give thanks for each and every employee at the hospital with whom we have worked.  Those we see on a daily basis are wonderful, but those working from their offices to make things happen for our family are also doing a great job.
Please thank God that Matt's parents are able to help us out this week.

Requests
Please pray that Anna's skin sensitivity and radiation burns do not bother her too much, or at least that we can help find ways to manage Anna's discomfort.
Please pray that Anna's body can handle her feeds so that she can successfully remain off of TPN.
Please pray for strength and wisdom for Matt and me.
Please pray for strength, rest, and wisdom for Matt's parents.  In addition to helping our family this week, they will need to attend a funeral in Iowa on their way back to South Dakota; one of Mark's uncles passed away.
Please pray for Ethan and Kate this week, specifically, as they are both missing having their momma around and are dealing with it in age appropriate, but still challenging, ways.
Please pray that everything goes smoothly as we transition from help and support at the hospital to help and support at home.
Please continue to pray that Anna's treatments are 100% effective and that she continues to experience minimal side effects.
Please continue to pray for all of Anna's care staff at the hospital; it will be different for everyone when Anna is not living here anymore.

On a side note, Matt received a telemarketing call this evening from a childhood cancer network.  After listening to their spiel, he told them that he would like to support children undergoing cancer treatments, but would prefer to use his money to support his own daughter who was going through cancer treatments right now .  That ended the conversation pretty quickly :)