Wednesday, May 28, 2014

Chemo Tuesday

Sorry it's been so long since the last post. We'll try to be better about keeping you abreast of things.

I spoke to Esther relatively briefly today. Mike took Ava to get her chemo. Port access for chemo was a bit difficult for Ava. If you recall, she had a port placed in her chest a couple weeks ago. This eliminated the need for IV lines in her arm and gives her much more mobility (for example, she can go swimming and bathe without concern). This is because the port is surgically placed beneath her skin and is completely covered, unlike the lines in her arm. When chemo is to be administered, they insert a needle into her skin to access the port beneath. They used some numbing medication today to alleviate any discomfort from the needle, but whether it was fear or the anticipation of pain and/or discomfort itself, it was hard for Ava to endure without crying. (Imagine someone needing to stick a needle in your upper chest!)

Ava also had another LP today (lumbar puncture), but I think today was the first time she was awake for it, unlike the other times when she was under anesthesia. Thankfully, it didn't require multiple sticks, but it wasn't the easiest experience, either...

Due to low RBCs (I'm pretty sure it was RBCs; definitely not platelets), Ava needed a blood transfusion today. Unfortunately, that meant it was 4 hours for the infusion, which didn't start until mid-late afternoon. So, another long and tiring day at the hospital, and yet they are so grateful to be doing this on an outpatient basis.

Something to keep in prayer: remember the one drug on this ALL treatment that gives virtually causes everyone to have a reaction? They decided a while back that they wouldn't give it to Ava. The thought was that maybe she could continue treatment without this drug. However, they decided that instead of this drug, they will give her an alternative agent to that drug. (I think we mentioned this before). So they won't give the actual drug that notoriously causes reactions, but a different, similar one. The catch? It requires Ava to go to Lurie's 3x/week, and it would be an injection in her thigh with a large bore needle. ("Large bore"  means that the diameter of the needle is fairly large, which means more pain... unlike insulin needles which are thin/small in diameter and not so painful. Sorry if this is redundant info shared previously; I don't know what people know/remember).

This drug is supposed to start next week. I believe Esther will be the one taking Ava to her appointments on Monday, Wednesday and Friday. Pray for grace and stamina in traveling to/from the hospital multiple times that week, and for God's "peace that transcends all understanding" for Ava (and parents, especially Esther). May God's peace drive out and replace any and all fear! Please pray for smooth administration and absence of pain, and/or courage in the midst of it.

They plan to do another bone marrow biopsy mid-June to see if the treatment is working. (And likely reassess timeline of BMT). Of course, we continue to pray for full healing and restoration.

Thank you again for your faithful friendship and partnership!

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