We have trust issues. We don’t trust Aspen’s cancer, not a bit. Any time Aspen spikes a fever, we get to relive the trauma of when she was first diagnosed. Leading up to diagnosis, Aspen had a fever for 10-days, which continued for another 20-days while in the hospital for her first round of chemo. Now when she spikes a fever the first thought is infection, particularly with her central line. There is also the fear that the cancer has spread into her blood stream, spreading rapidly and causing a fever. There is also the more likely option that she just has a stomach bug, and when you’re neutropenic the smallest viral fight triggers a fever.
This past week Aspen spiked a fever of around 100 at home, which means we immediately call the clinic (if it’s open) to tell them we’re on our way. As soon as Aspen got through the door she puked and had a fever of 102. Given that she’s neutropenic, a fever is an automatic 48-hour admission to Hotel Hasbro [Children’s Hospital]. Turns out Aspen had Rhinovirus (common cold) and Norovirus (Stomach Bug), which lead to her being quite sick and dehydrated. Unlike your average person who can handle these viruses, Aspen’s cells are dealing with being hit by chemo while trying to fight off viruses. Fortunately, the rest of the house is relatively healthy and dodged the wrath of the various viruses.
Frankly, being in the hospital sucks. And when your kid is neutropenic, they can’t leave their room, nor can you, because they’re more prone to picking up a virus. Somehow we didn’t skip a beat. We took turns staying overnight with Aspen while Troy continued working from home during the day. Elliott still made it to hockey and school on-time. Hospital life has become normalized for us, working it into our life, much like a normal family meets together at the end of the day for dinner, and puts both their kids to bed. On hospital days, we FaceTime through the day and hope for an expeditious release. The thing is, none of this is normal. Children shouldn’t be fighting for their life everyday to the point where one child remembers an amazing sunset from the roof of the hospital parking garage. Full disclosure, it was a truly stunning sunset.
Hospital stays conjure anger, frustration, sadness, anxiety, and trauma. Unfortunately, more hospital stays are nearly certain for Aspen, and us. Aspen is looking at potential second transplant, which, given the aggressiveness of her disease, is something she’d be “lucky” to make it to. Lucky if she survives long enough, her disease goes into remission, and is accepted for another transplant. We wish everyone saw Pediatric Cancer as the crisis that it is and needs cures in less time than we can afford. How can we reach more people so they will donate to research to cure this deadly disease? How can we save our child? These are the thoughts that go through our head, when we lay them on our hospital pillow at night. We need to do more, we are tired and angry, we need help. We need to fight, and we need you all right there with us. We cannot fight alone.