On Wednesday, Caroline woke up out of her sleep crying in pain - the worst pain we’ve seen her in since she was admitted to the ICU in 2018. Nerve pain is an unfortunate (but expected) side effect of the antibody therapy that can come and go at any point. She’s always experienced nerve pain during each cycle, but it's been manageable with her continuous Dilaudid infusion. However, this "extra" nerve pain was extreme and came out of nowhere…literally waking her up in the middle of the night. Her team worked quickly and diligently to get the pain under control, but it took a while to get her comfortable. It was beyond excruciating to witness her agony without being able to do anything, and we can only imagine the pain she felt.
Besides the physical pain, Caroline was in true emotional pain this week. This cycle came on the heels of her two additional inpatient stays for Sapovirus and RSV. She didn’t really get a chance to recharge and do “normal” things in between the two cycles, which really took a toll on her mental health. One major difference between Caroline going through treatment this time around vs. the first time, is her awareness of what she's "missing out on" socially. This is such a fun time of year for kids, and missing so many Christmas parties and events had her crying A LOT. Knowing her friends were having fun at school while she was at the hospital laying in pain had her asking some un-answerable questions: “why is this happening again?;” “why isn’t life fair?.” Her spirit was broken this cycle, and we’re praying she gets some solace in the days ahead, even though we can’t go back in time to let her experience all the missed Christmas fun things, or answer her hard questions. This is one cycle we will all be processing long after.
Caroline's next cycle is scheduled for 1/3/22, so barring anything happening in between, we’re hoping to be able to spend the next 2 weeks at home creating some Christmas magic for our family.
Thank you to everyone who sent us UberEats gift cards…they are a huge help because Caroline won’t eat any of the hospital food, and we still aren't allowed visitors.