I try to stay positive on here because we truly are so blessed and fortunate that Rosie’s diagnosis and prognosis is so much better than so many others. She is stronger than I ever knew was possible, and I am so incredibly proud of her. However, the reality of this is that it is hard. Even on the best days, this is hard. Between constant medication, regular medical appointments, and difficult side effects; we struggle. I wouldn’t wish this on my worst enemy. 

Steroids are currently our largest battle. Rosie seems to be particularly susceptible to the side effects of steroids; including roid rage, extreme hunger (and wild food cravings), inability to manage emotions, and generally not feeling great. In addition, the job Chris was working on wrapped up and he was laid off. The positive is that he gets to spend more time with the kids and be at every appointment, but the added stress is frustrating. We are so fortunate that he is in a union, so Rosie’s healthcare is uninterrupted and a new job will come soon. We will continue to find the good in everything we face and be extremely grateful for everything that is going so well for us.