Friday, April 22, 2016

Friday's Update...from the Front Lines, day +9

Hi all.  This is Tiffany.  I am sitting with Abby at the hospital right now and for the first time since radiation started, I feel like there is a little breathing room in this whole experience.  I think we all feel it, although we are all very, very tired.  It feels like there is some time to process all that has gone on from radiation to now.  It feels like there is room to go get a cup of coffee from the kitchen and stand at the window and drink it and look at the view from the 7th floor here at Children's.  Abby is doing better.  She is still hooked up to lots of things, pain pump included.  However, she isn't needing all 3 anti-nausea medicines round the clock.  She hasn't needed her pain meds to be dosed-up which is good.  She is talking more, engaging more with those around her.  Her mouth sores are not getting any worse, neither are her GI sores we believe.  Today, for the first time, we saw  some monocytes in her blood!  Huge deal.  That means Anna's stem cells have found their home and are beginning to produce some baby-blood cells (monocytes).  We will wait through the weekend to see if it's really beginning.  It's day +9.  The BMT manual (yes, they gave us a manual) says engraftment can start as early as 7 days.  It's still a slow climb out of no immunity but we are starting up the other side and that is wonderful!  Anna was starting to worry that her cells weren't going to get to work, or that they would cause more problems.  I can't wait for Mark to tell her the news!

We also have an apartment down here now.  Another huge deal to celebrate!  Brent's Place is managing 4 new apartments that the hospital rented.  Since Brent's Place is full full full we get to stay in one of the new apartments but still use all of Brent's Place resources.  So... we get to have meals brought to us Monday, Wednesday and Friday at the hospital if we want.  We get to go on outings with Anna and Lily once a month in Denver.  A music therapist comes on Thursdays to Brent's Place and can do lessons on the piano or guitar for the girls, Abby too when she is out of the hospital.  The apartment has a swimming pool!  Abby won't be able to use it but Anna and Lily will.  We are going to try to play that down and so are Anna and Lily because we all know how much Abby loves the water!  At least our place doesn't overlook the pool.  So, we will have a place to crash down here for now if needed and when Abby gets out we will have a home away from home that puts us right next to the hospital for all those appointments until day +100 and keeps us close in case something urgent comes up.

Prayers needed for Abby to start eating a bit more so that she won't need the feeding tube.  Also, continue to pray that the monocytes are being made and the whole blood factory is up and running soon!  No infections-so far so good.

We appreciate all your care of us!

6 comments:

Anonymous said...

Praising the Lord for the more positive report and the fact that you can sip coffee and breathe! Continuing to pray for your precious family. Blessings!

H. West said...
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H. West said...

Thanks so much for sharing the good news-- continued prayers for healing and growth. My classroom window faces Brent's Place, so you can give me a wave when you are there and I'll be thinking of you when I look out. Please let me know if there is anything I can do while you are down there!

H. West said...

Thanks so much for sharing the good news-- continued prayers for healing and growth. My classroom window faces Brent's Place, so you can give me a wave when you are there and I'll be thinking of you when I look out. Please let me know if there is anything I can do while you are down there!

Joan said...

so glad that things are looking good- there are many people who know you and even more who don't who are praying for healing.

Unknown said...

Wahoo hallelujah!! Praise the Lord! Thank you Jesus for the continued multiplication of HEALTHY monocytes!!