A (hopefully) quiet day

Weekends at the hospital are much quieter and calmer than weekdays.  Not only will Anna have a two day break from her radiation and chemo treatments, but she'll only have one therapy session during the next two days.  Previously, we were a bit frustrated by the "weekend break", but today I'm looking forward to it.  I hope to get Anna up in her wheelchair a few times and maybe even take a bit of a field trip with her out of her room.  We'll see.

Yesterday was a pretty good day for Miss Anna.  She "tolerated" her radiation and chemotherapy well.  I now realize that some people's bodies do not tolerate these treatments well at all, so it's a blessing that Anna's doing okay with them so far.

Matt spent the day with Anna and we think he'll continue to do that on Fridays, so that he also has the opportunity to interact with Anna's primary care givers.

I went home by 7 yesterday morning and spent the day with Kate and Ethan (and my mom until around noon).  Ethan is such a riot right now; I miss being able to spend time with him.  Kate is struggling in her own way, especially with Matt and me doing the back and forth hospital routine again.  We hope that her "in the moment" personality keeps making life enjoyable for her.

I brought Kate and Ethan to visit with Anna yesterday afternoon/evening.  Anna had just finished having a bath, complete with hair washing.  Her nurse yesterday worked for more than a half hour trying to get out all of the tangles of the last 5 weeks.  I think this was the first time Anna's hair had been thoroughly brushed through since we've been here.

We took the kids (minus resting Anna) to the floor kitchen last night for a family dinner.  I think this was the first time the four of us had dinner together since Monday night.  Some day we'll be able to all be home and eat together as a whole family again.

Anna's blood pressures have been all over the board again in the last 24 hours.  This could be a result of many things (changing ICPs, side effects of medication, etc.), but we're hoping it's nothing serious.

Last night Anna called out at one point and said "The tube in my nose came out."  Hmm ... somehow her ng tube was completely out.  I asked her if she vomited; she said no.  I asked her if she was picking at it; she said no.  These things don't just fall out.  Anna's night nurse took it as a good sign that Anna was irritated with it enough to (most likely) pick at it until it came out.  But it means that today she needs to have it replaced.

Tomorrow is "Songs for Anna".  Matt and I have been struggling with how to feel about it all.  So far in this journey we have been allowed to stay in our "family bubble" and haven't had too much interaction with the world outside of our immediate needs.  To be honest, we are incredibly grateful for the opportunity to do this our own way.  We are still amazed at how people are willing to drop everything and help us at a moment's notice.  But the benefit is different.  Many, many people (some of whom we have never met) are putting in a lot of time and energy to make this happen and it feels a little intimidating.  We're not the kind of people that like being in the spotlight.

Last week I got in touch with my cousin, who unfortunately was the recipient of a similar kind of benefit a few years back.  He had some wise words and perspectives to share with us.  Due in part to his advice, Matt, Kate, Ethan, and I plan on attending the benefit together while someone from church stays with Anna.  Matt and I, however, would like to be the "flies on the wall" instead of the center of attention, and just be allowed to be witnesses of the amazing support network we never knew we had.

Time for prayers

Thanksgiving
Please thank God that Thursday's false alarm was truly a false alarm.
Please thank God for the relative rest of a weekend at the hospital for Anna.
Please continue to give thanks for the wonderful care Anna is receiving here.
Please give thanks that Anna seems to be improving more each day.
Please thank God for all of the people who care for our family and who are willing to go to great lengths to help us.

Requests
Please ask God to grant Anna rest and healing this weekend.
Please pray that the changing blood pressures are nothing serious.
Please ask God to quickly and easily sort out Anna's ng tube business.
Please pray that Anna experiences few side effects to all of the drugs she is taking right now.
Please continue to pray for those involved in tomorrow's benefit; for strength, energy, and peace as the details fall into place.
Please continue to pray for Anna's caregivers here at the hospital.
Please continue to pray for strength and wisdom for Matt and me.

Before all of this happened, we had a routine of doing family devotions in the morning after breakfast and before school and work started. We would pray with and for the kids about the coming day. One prayer we often had was for God to watch over their minds, bodies, and souls throughout the day and to have his Light shine through them so others could see His love. We still have that prayer for our kids, but I wish it wouldn't be under these circumstances. Wasn't there an easier way for God to shine his Light?  Why did it all have to happen to Anna?


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