Unscheduled Visit
If you ever thought things were dull in between blog posts, let me assure you that cancer has lots of ways of surprising us. After we were discharged from our last round of chemotherapy, things had been going remarkably smooth at home. We had a good plan in place with our team in terms of medication schedule and a new formula that seemed to be easier on Charlotte's stomach. We were keeping nausea at bay, and seeing good energy from Charlotte. It seemed like it was our best recovery period yet, and we were feeling like the adjustments we had been making were having a real impact.
Then, out of nowhere on Wednesday night, Charlotte got sick and the NG tube came out. She hadn't been feeling any nausea for days, but it had been biding it's time and surprised us all. Days of good feelings were largely erased, as we worried that we had done something wrong. The silver lining was that we already had appointments scheduled for the next day for lab work and nutrition discussion, so we knew we could get another tube placed. We think we're comfortably into double-digits now for number of NG tubes she's had, but it's getting tough to keep track. She's much better about tolerating the process now, but it's still so hard to put her through it, especially when it seems like it's just a matter of time until it comes out again.
The appointments on Thursday largely went fine, and we left with a slightly adjusted nutrition plan, a new tube, and lab results that showed that Charlotte had low counts for white blood cells and platelets, which is exactly what was expected at this point after cisplatin and doxorubicin. Once we got home, we resolved to take it easy and get our rest.
As we were putting Charlotte to bed, we had our first scare with a potential fever post-chemo. She was just over 100.5 Fahrenheit, which meant we needed to monitor her regularly to see if her temperature got any higher. With low white cell counts, we have to be extra cautious about possible infections. Fortunately, her temp dropped back to normal within 40 minutes or so, and we checked a few more times overnight, all which came back around 98 - 99 degrees. Phew!
As it turns out, we were far from out of the woods. Around 5 am, Charlotte got a bloody nose in her sleep, and called to us for help. With her low platelet count, we could not get the nosebleed to clot. We thought we had it stopped a few times, but it kept restarting within a minute or two, and after a while, it was clearly becoming worse.
We called the on-call nurse hotline for guidance, but ultimately we already knew that we would need to bring Charlotte to the ER. While we waited for the nurse to call us back, we got ourselves ready to drive in, and were already mostly prepared by the time the nurse called us back to confirm (I want to stress, this was only a few minutes of time, the nurse at Children's did not keep us waiting long at all). We finished getting ready, and got on the road to SCH in the early hours of the morning. Lauren dropped Charlotte and I off at the door while she went to park, and the ER quickly got us in to a room. Because we had called ahead, they already had Charlotte's info pulled up, and had started working on getting a platelet transfusion ready for her.
The platelet transfusion was pretty easy, and Charlotte remarked how it made her feel noticeably better. We were hoping that was a sign that our trip to the ER would be a short one, but then the doctor told us that due to the fever from the night before, they wanted to do some additional bloodwork to check for infections and start Charlotte on some antibiotics just to be on the safe side. With her weakened immune system, they didn't want to take any chances. So I went home to quickly pack us all some overnight supplies, while Lauren and Charlotte got relocated. Our trip to the ER has us staying the night in familiar territory in the cancer unit.
We're all tired, but right now the plan is that we get to go home tomorrow. Certainly not what we had in mind for the start of our weekend, but hopefully it's a short stay and no further surprises. We're very grateful that the team here isn't taking any chances with our girl's health, even if it means some unplanned time here.