Discharged-July 12
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Saturday July, 12
We’re home!!
We were officially discharged this morning—and it still feels a bit surreal. I can’t believe we’re already home, but I’m certainly not complaining! We’ll be back and forth to the clinic quite a bit though… we have about a weeks’ worth of appointments packed into the next three weeks.
Avry had such a good night again last night. Honestly, it’s a little baffling in the best way—not having any of the usual chemo side effects this round. We’re incredibly grateful.
This morning came with a couple big things to do first:
• First, they removed her Foley catheter. As we prepare for transplant, one of the most important things to monitor closely is organ function—especially with the increased risk of organ failure. So we are watching things carefully.
• Second, she started her next round of shots. This is a full week of injections, and this morning’s dose was especially tough. She had a male nurse and it took four nurses to help—but she was SO brave. Jake and I have both noticed she handles it best when it’s just the two of us doing them. She’s truly such a little warrior.
Right now, she’s sleepy and weak but doing remarkably well all things considered. It’s amazing to see.
Her white blood cell counts will begin dropping quickly and hit zero any day now. Today is day six of this round. They’ll begin recovering around day sixteen, so for now, we’re in full protective mode to keep her as safe as possible. We’ve never been home before when her counts were this low, so it brings a new layer of caution and care. Thankfully, we’ll be at clinic twice next week—I imagine she’ll need blood products, and that gives me some peace of mind.
We’ve been able to attend church the past couple of weeks, and tomorrow I would love to go and just be surrounded by the people. If we do go, we’ll probably just pop in for Sunday school, and I would keep Avry in the nursery with me—separate and isolated. We’ll see how she feels in the morning. She did vomit on the way home from the hospital, and while that could be a delayed reaction from the chemo (which isn’t uncommon), it could also be from the medication she was given right before we left. So we’ll just take it moment by moment.
Linford and Anna are here with us through Tuesday, and we’re so thankful for their presence. Avry doesn’t have much energy to be up and about, but it sure is fun to see a table full of little people!
Yesterday, when Dr. Cohn asked me how our two weeks at home went, I told her she might not want to let us stay home that long again… we might not come back! 😉
Tonight I enjoyed grilling chicken and cooking rice and fixing a veggie tray. We can’t get done eating fresh watermelon. This may sound so simple in trivial-but it’s exactly what my heart longs for! It feels so good to be in the kitchen. I hope to grill to the cows come home During The Weeks We are home!
This morning I finally had a moment to read through your messages from yesterday’s update—and I just want to say, thank you. So many of you have the gift of words with comfort and encouragement. We feel your love. I wish I had better words to express how much your care means to us right now.
With a full heart,
—Rose
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Alicia Harris
Jewel Nolt