Wednesday, April 21st
Avery has continued to feel ok the past couple of days. She has had no new issues or worsening issues appear. Her numbers looked better at clinic this morning and are trending in the right direction. Her platelets were 80(up from 60 last week), and her ANC was 4400(up from 450 last week thanks to the Neupogen). It is possible that her platelets could hit 100 next week as needed for the trial, but those are the slowest to recover for Avery so we may have to consider adding in a medicine that helps boost their production. They ran a lymphocyte panel as well, but it will take a couple of days to come back.
Despite the improved labs, it was a rough day for Avery at clinic. She did great getting accessed and her labs drawn, but things started going in the wrong direction quickly. She had to receive her monthly Pentamadine to protect from pneumonia. As soon as they tried to hook her line up, her fight instinct went into full effect. She fought herself to sleep and slept until it was almost time to go home.
We return to clinic to a week to recheck labs. They are also checking if she can get her CSF Flow Study performed at Children's/UAB to save us an unnecessary trip to Gainesville.
Please continue to pray for:
- Improved platelet count
- No new or worsening side effects
- Avery's anxiety
- Complete healing
I am sending love and prayers for all that you asked for, and for Avery to feel better every day! I can't imagine how hard it is to see her go through all of these treatments, meds, and of course, she gets scared, angry, and in the "fight or flight" mode. I would probably break and run for it---- and I know for a little girl ----as brave as she is, she is tired of the needles, prodding, and tests. I admire you, Lori Beth, and Shon for being so supportive, loving, and never wavering in your faith and love for your family. For those of us on the "outside," it is always another day of prayers for her hea…
Love you Avery! I would not be happy with all that stuff they have to do to you either! Hang in there!
Lord I pray you will touch this family and give Avery the strength to keep fighting and complete healing. Lord I ask you to help this family and give them the strength to carry on. Lord I ask this in your sweet name
Praying!
Prayers for all.