A whole new week

Anna has not yet had a whole week in the hospital without major surgeries or setbacks.  Maybe this is the week.  We set up a "schedule" for her today that involves radiation treatment, speech therapy, physical therapy, playdates, "field trips", and lots of rests in between.  Today went pretty well with all that.  Hopefully tomorrow goes well, too.  Tuesdays, as of late, aren't really good days for us.  As our nurse today told me, maybe we should just think of tomorrow as the first Wednesday :)

A few relatively exciting things happened in our hospital life today.  First, Anna had a playdate this afternoon with Kate and our neighbor; Anna was looking forward to finally being able to see Carly.  As part of the playdate, we packed Anna up in her wheelchair, and were able to take her OUTSIDE.  Although it was only for about 10-15 minutes, that is more outside time than this girl has had in 5 weeks.  Anna watched Kate and Carly run around in the warm weather and smiled.  These were the first smiles we've seen out of our daughter in weeks; it was good to see.

The other exciting thing was that, as of tomorrow, Anna will be off of her isolation status!  I asked about the continued isolation requirements this morning during rounds and, amazingly, by the end of the day we got the good news.  No more yellow gowns ... hooray!  Plus, this means Anna may have the opportunity to interact with, or at least see, other kids in the hospital, instead of being stuck in her room ALL THE TIME.

Every day Anna seems to be getting a little bit stronger and able to handle more and more.  It will be interesting for all of us to see how well she does with a whole week without any set-backs.

The current plan to go home involves many stages.  First, Anna has to be strong enough to ride in a carseat for 30 minutes, twice, with home activities in between.  Once she passes that test, we may get a day pass to come home on a Saturday.  Matt and I would also need to be able to do all of Anna's care, including medications, feeding, bathing and toileting needs, and transferring her from place to place.  We're doing more and more each day at the hospital so I think we'll be ready when Anna is.  If all goes well with a day pass, then the next weekend we may be allowed to have an overnight pass, from Saturday to Sunday.  We haven't thought much farther than that and we don't exactly expect that Anna will be ready by this weekend yet.

The radiation and chemo seem to be working so far, it will just be a matter of if they get every last cancer cell in Anna's little body.  Then, it's also a matter of helping her rehabilitate after a long month with many struggles and set-backs.

Besides spending time with Anna, we enjoyed seeing many people at the benefit yesterday who we haven't seen in weeks, months, or even years.  It was uplifting to be the recipients of such care and concern.  All of our interactions with people were very positive and encouraging.  However, one of my most memorable conversations happened with a little girl about Anna's age.

I was helping Kate make a bead necklace at the craft table when a young girl (whose face I recognized, but whose name I don't know) asked me for help tying the yarn for her necklace.

While I was helping her, she asked me, "Do you know the girl in the hospital?"

My response was "Yes, I do.  Actually, I'm her mom."

The girl put her hand on my arm and said, "This must be hard for you."

I don't remember what, if anything, I said back to her at that point; I think I was stunned.

Then she said, "When my sister was born, my mom was in the hospital and she almost died.  This must be hard for you."

After I tied her necklace, she wanted to put it around my neck, but it didn't fit over my head, so I told her I'd take it with me to the hospital.

The honesty and simplicity of that interaction was beautiful.  As much as we, as adults, want to do something to help someone who is in physical or emotional pain, maybe sometimes it's just best to acknowledge their struggle and then move on.

Don't get me wrong, we appreciate whole-heartedly all of the help that we've been getting.  And there will certainly be more opportunities to help our family in the weeks and months to come.  But I could tell that this little girl felt my sadness and, in doing so, seemed to take some of the burden off of my shoulders.

But then we moved on and kept making necklaces.  As my wise mother has told me, emotions are like waves.  No one is going to be sad forever.

Time for prayers

Thanksgiving
Please thank God that Anna had a "playdate" this afternoon and was able to get some fresh air for a little while.
Please give thanks that Anna's isolation status will be lifted tomorrow!
Please give thanks for the consistency of nurses and nursing assistants we've had since our return to the hematology/oncology side of the 4th floor (also known simply as P4); they are very talented and have already done a wonderful job anticipating our family's needs.
Please thank God that the radiation and chemotherapy are killing the cancer cells.
Please give thanks that Anna is tolerating the gradual decreases of her sedation meds and steroids well.
Please thank God for the strength and energy Matt and I had to get through our long day yesterday.
Please give thanks for the mommy-Kate dinner date that we had in the hospital cafeteria this evening; we both needed this time together.

Requests
Please pray for strength and wisdom for my mom as she has her first overnight and all day shift with Anna tonight and tomorrow.
Please ask God to bless my day tomorrow with Kate and Ethan; we'll be visiting Anna at the hospital in the afternoon, but I'm looking forward to spending some "normal" time with them tomorrow morning.
Please continue to pray that Anna's treatments are completely effective in destroying all of the cancer cells.
Please pray that Anna experiences few (or no) side effects from the treatments.
Please pray for Matt and I as we prepare to have Anna home for hours, and days, at a time.  She won't be quite the same Anna that we had before.
Please continue to pray for Anna's care givers at the hospital.

Today's Lutheran Hour Ministries devotion contained a good message for me to hear.  The last paragraph was as follows:

"So, as God's witnesses, we continue to share the Gospel with those God places on our daily path.  At the same time we remember it is the Spirit who works faith in the hearts of the people, not us.  We are simply blessed to be God's instruments."

Please pray for any who have read this blog and heard our witness.  Pray that God's Spirit works faith in their hearts.