Wednesday, September 30, 2015


James 4:13-15  Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

Once again, my ability to be flexible, or my ability to not be so caught up in my plans/schedule, is what God is working on. How soon we forget the lessons we were just taught!

This morning we brought Ruby into the clinic for a bone marrow biopsy (piece of bone) and aspirate (sample of bone marrow) (both of those are done to test for percent of leukemia cells) and a lumbar puncture (to test for leukemia cells and to administer chemo in her spinal cord/brain). Upon arrival, we were told she would just be having the aspirate; just before the next round of chemo she will have the lumbar puncture. We were also informed that her platelets and hemoglobin were at good levels and her ANC was over 2000 (that's like as high as someone without leukemia might be!!).
The procedure was a quick one, and before we knew it we had Ruby back with us. The post-op nurse informed us that we would start the chemo at 3PM, so we had the rest of the morning/afternoon to just hang out until we were given a room on the AFLAC unit. Before we had a chance to leave the room to grab some food (Ruby hadn't eaten all morning), one of her doctors came in to check in with us. I can't remember how it came up, but we ended up discussing the specific protocol for this round of chemo, and it became apparent that the plan that Lehr and I understood to be scheduled was not at all what the team had on their agenda.

Ruby's chemo this time is more intense. That's basically the only common characteristic between our plans. As it turns out, Ruby will have four doses of chemo on a 3-hour drip every 12 hours. With the first one starting at 5PM tonight, that puts her last one on Friday morning. I can't remember the exact hour, but at a specific hour towards the end, she receives a shot of chemo to finish it off. At that point (Friday), Ruby will go home until she repeats this same protocol (still in Round 2 overall) on Wednesday. That time in between these treatments will bring her numbers low, which makes the second part of this round more intense as it hits her when her counts are low.

And now the plan differs slightly depending on which doctor you talk to. She could go home earlier than 21 days from next Wednesday or she could be here longer than expected...28-35 days.

This does not help this control-freak mama. Plus we got tickets for both grandmas to come and help with the older kids on different weeks to maximize coverage at the house so that Eli and Maddux are less disrupted. Those tickets cover about half of Ruby's stay now instead of all but three days.

I know this journey is one that will have changes and bumps in the road due to Ruby's tolerance to the treatment(s) and sudden illnesses and infections. But regarding the expectations for Round 2, both Lehr and I (plus a friend who was here during rounds to hear the plan) received the schedule at least three different times and it was explained to us that it would follow the same '96-hour drip of chemo and 21 days of stay' flow as last time. This newly changed schedule seems to have no cause.
So here Ruby and I sit in the hospital, our car packed to the gills with toys and clothes and food for three weeks when we are only going to be here for two nights. Nothing to do but shake my head and laugh at my grand plans to be so prepared.

While I plan to ask for answers during rounds tomorrow to hopefully understand the situation better, I know the doctors are doing what they think is best for Ruby, and it's likely a big misunderstanding. I also know that it will play out to Ruby's benefit to have the schedule change, because that's usually how God works. Finally, I know that this whole process is a big ole reminder for me to let go of my need to feel in control and to let God work through me.

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