The plan was for Ava to Erwinia on Mon/Wed/Fri for two weeks, starting this week. She went in today to get her second dose. In general, administration of this drug is pretty traumatic, fraught with tears, screaming, pain... just a lot to endure. She also received vincristine (another chemo agent) and got another spinal tap while still conscious, which was also rather traumatic as they didn't get it on the first try.
Ava's platelets were down to 9 today, so she needed a platelet transfusion. She was asleep during at the time, but in the middle of the transfusion, she bolted awake with itching, scratching, stomach ache, tears and real misery! So she got the Epi-pen and albuterol, and will now spend the night to be observed.
Her reaction may have been to the platelet infusion (as has been her pattern) or to the Erwinia; the docs don't want to take a chance with Erwinia as subsequent reactions may become worse/more severe. They will discontinue the Erwinia treatment, and Ava will return to getting other chemotherapy every Tuesday. On one hand, this is a disappointment as she wouldn't be getting the full, recommended treatment regimen. The plus side is that Ava doesn't have to endure these administrations 3 times a week for two weeks. They will still do a bone marrow biopsy in a couple of weeks to see how she is responding and where we are at. Please pray for Ava to be MRD negative by that time.
I'm not sure if there is more to share right now (our conversation was cut short), but certainly BMT is on the horizon. Please know that all of your faithful prayers and persistent support is a true lifeline even if Esther and Mike aren't quite up to updating on a more timely basis. They feel incredibly blessed to have such an amazing support network.
Please pray for Gwen as well. She is not expecting her parents & Ava to spend the night at the hospital, though we are grateful for Esther's parents who have been loving the girls and able to care for them through all of this.
It certainly seems like a marathon - yet how do you exactly "pace yourself" through leukemia? There are times of intense sprinting, and other times of rest. It isn't quite like the typical marathon training one would imagine (or engage in, if you are a marathon runner). But with leukemia, you don't know when the end is in sight, how long you will have to run, or what kind of finish line you will cross. Please pray for physical, mental and emotional stamina, God's power in their spirits, His recognizable grace at every turn, and His miraculous blessing in the midst of trial. May He be glorified.
3 comments:
Will be praying.
Appreciate this update. We need one another and to kee trusting in His character.Praying with you.
Praying with you and for you!!!!
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