Thursday, January 29, 2015

Day 69: Quiet for Now

There haven't been a lot of updates to share lately (in a good way). The relative quiet of the recent times is a welcome thing. Ava had a lumbar puncture done yesterday along with chemo as scheduled. This is to ensure no cancer in her CNS system. Today, Ava will have a relatively long day in clinic to get drug levels drawn at periodic times. She's at the clinic as I type, and is getting levels drawn every hour. She has 4 more to go!

Some more things we thank God for:
  • Ava continues on her steroid taper, and appears to be tolerating it well. She's down to less than 1/3 of her original starting dose from numerous weeks ago, so we're getting there!
  • Ava's CMV levels (the virus) unexpectedly went down on its own. The doctors are very pleased about this, as their main concern with her elevated CMV levels is the possibility for CMV pneumonia, which would be very difficult to treat/keep under control.
  • One of the anti-rejection meds Ava is on is cyclosporine, which needs to be within a therapeutic window, meaning the levels need to be high enough to be effective, but not too high to cause toxicity or unfavorable effects. As a result, this drug needs to have levels drawn periodically and doses adjusted accordingly. They seemed to have found a good dose at which Ava's levels remain within the therapeutic window without much adjustment.
  • Despite Ava's GVHD and occasional elevated viral levels (e.g. CMV or rhinovirus), it looks like she is on track to be discharged home to Chicago at pretty close to the day 100 mark, which would be the earliest she could go home. They've even begun some of the discharge procedures/documentation/training, etc. Woot!
The unseasonally warm weather in Seattle continues to be a blessing. Esther has been having more frequent, strong contractions, so this may be the writing on the wall that the baby might come soon (due date is tomorrow).

Ava continues to be hungry throughout much of the day due to the steroids, and if you have any experience dealing with hungry children, you can understand how this can color much of the day. But it's not as easy as just feeding her more, or giving her smaller, more frequent meals. Eating too much can cause her intense GI pain, so it's a balance. Please pray for patience and grace in dealing with the hunger/steroids/GI issues. Thank you!

After today, Ava isn't scheduled for another clinic visit until next week. We trust in God's timing for baby's arrival and are thankful for Mike's mom who will help watch Ava and Gwen when the baby comes. Thanks for praying for mom and baby's health and safe delivery!

1 comment:

Anonymous said...

Things are falling into place for the Lee Family . . . . Yeah! Can't wait to see the new baby boy.
God is good!