Levi made it home after our unexpected “bonus” stay, and his counts were good enough to start the next stage on time! Yay for powering through. We administered his IV antibiotics at home so I learned some new things, and we got a little more comfortable with him being accessed at home (a needle stuck in his port and tubes attached to him for easy med administration). We had to remind the older kids a few times about not playing too wild with him, he couldn’t have a bath while he was accessed, etc. Beyond that, life was pretty normal for him at home.
It’s been a roller coaster 2.5 weeks for this stage so far. He started the first week with steroids daily for a week, and some IV chemotherapy. He gets the IV chemotherapy weekly the first 3 weeks. The steroids were on a week, off a week, on a week.
Steroid weeks we’ve learned are the tough ones for him. He spends most of the week moaning, nauseous, and not feeling well. Lots of mom snuggles/nursing happen this week. Frequent night wake ups, and towards the end of the week, a better appetite (Mac and cheese first thing in the morning has been a favorite 😂) They noted a lower heart rate in him at one appt, and said they believe he’s sensitive to the steroids. Unfortunately this won’t be the end of steroids for him, as he’ll have shorter rounds of them in maintenance, but not terribly often.
We expect he may need transfusions in the next week or so, as it’s quite common. Luckily we’ve been able to schedule most appointments for when the older kids are at school, so they aren’t seeing much disruption from these appointments at all.
His counts will also fall. The next 6 weeks he’ll be on a pretty strict lockdown due to a very low immune system.
We appreciate all the thoughts for Levi and everyone pulling for him! While it’s a tough stage, it’s his last one before maintenance, when life starts to resemble more normalcy with fewer appointments ❤️
